bedwellfamilyoffive

2011-05-01T05:11:00.001-07:00

http://www.carepages.com/carepages/EllieJoSchmidt

http://www.carepages.com/carepages/oliviakathrynfaye

The links above will take you to two carepages of beautiful
little girls. Both have had the Fontan(heart surgery). This is the
surgery Mackynlee will have next year. Please lift these girls and
their families in your prayers. It is very difficult for me to read
these updates. I am not ready to give Mackynlee back to the hands
of the surgeons.

2011-03-05T06:03:00.000-08:00

Barney Bday

Today is a very special day! We are celebrating Mackynlee's 2nd bday. We are so thankful God has given her to us! She has turned into a sassy two year old. She thinks everything is hers including me. She does not want me to be Shelby and Connor's mom, too. LOL

This is also a very sad day here in our community. Mr./Coach Ray Haney passed away yesterday. He had been hospitalized since the beginning of December. Please lift this family in your prayers as they are all exhausted and now in mourning.

Coach Haney was a highly thought of man. He taught/coached at the high school I went to and I now teach there. He wasn't a lazy teacher. You knew more everytime after coming out of his class than you did before entering.

I have many memories of him away from the school, also. Kathryn and Susan have always been very good friends of mine. Coach Haney took us to horse shows, ballgames, worked us if we were hanging out and he needed help, etc.

"Don't let your hearts be troubled. Trust in God, and trust also in me. There is more than enough room in my Father's home. If this were not so, would I have told you that I am going to prepare a place for you? When everything is ready, I will come and get you, so that you will always be with me where I am. And you know the way to where I am going."
John 14:1 - 4

2011-02-25T03:27:00.000-08:00

She's Two!!

Posted a few seconds ago
For this child I prayed; and the LORD hath given me my petition which I asked of him. 1 Samuel 1:27

I should have changed the word I to we in the above bible verse. I want to thank each and everyone of you for your prayers for more than 2 years for our special girl. Many of you prayed with us for her before she was born.

Mackynlee has been saying, "I two!" for months, she officially turned two yesterday. I cannot help but to think back to this day two years ago(heart moms, will I always do this on her bday). All I wanted to do was get the the NICU. Mark and I got to go for a very few minutes and see her. The rest of the day was spent trying to get insurance stuff done, medicines filled, and a time to depart MS. She and I got on a tiny jet around 10 or 11ish. We got to PA in the middle of the night. I caught a few hours sleep in a tiny sleep room at the hospital. When I awoke, doctors swarmed me with questions all day. Genentists believed something was wrong with her other than her heart. I was told her nipples were too far apart, ears too low, etc..... WHAT A DAY!!!

Mark got to PA late that evening. He and I met at Ronald McDonald house, quickly put our things away, and off to CHOP to see Mackynlee. The next morning was surgery with many difficult days to follow. Thank God above, He saw us through. Now our life is pretty normal. Each day is a blessing.

Proverbs 3:5-6
“Trust in the LORD with all your heart
and lean not on your own understanding;

In all your ways acknowledge him,
and he will make your paths straight. ”

________________________________________________________________________

My heart was saddened this morning as I checked my email. I learned that a beautiful newborn girl heart baby passed away. I had been keeping up with this family through another family who I met in PA. This baby was the family's 4th child. Please pray for them.

2010-12-26T23:17:00.000-08:00

I have been so thankful this holiday season for Mackynlee. This is a video from her first year of life. It is kind of lengthy. The first four minutes were shown in church the first time we took her. After that is just a family video of her first year.

This little girl has blessed our lives in so many ways!!

2010-12-11T08:13:00.000-08:00

No news is good news!! Since my last post, all has been going great(other than normal stuff: stomach virus and ear infections). Mackynlee eats fine with no teeth. The neurologist released her! Yes, you read that correctly. One less doc on our list!! Yesterday she went to the heart doc. She was very pleased with everything. She has gained weight. Doc increased the amount of her meds due to increased weight.

Reflecting on last Christmas makes me cringe and makes me thankful. Last year Mackynlee had the feeding tube during this time. We were so stressed about feedings, time in between feedings, throwing up after feedings, etc. We are so blessed that our miracle is doing so good!! Last night I took the children to see some Christmas lights. I could barely keep Mackynlee in the car. She jabbered about the lights. She wanted to get closer to them.

Prayer Requests:
Pray Mackynlee's ear infections stop and we do not have to go to an ENT.

Coach Ray Haney is being moved to long term acute care. He is still on the vent. The long term acute care help people get off vents. Pray for his body to strengthen. Pray for God to give him comfort. Pray for strength for his family.

Pray for my grandmother. She is at home, but not doing well. Please pray for her caregivers as well.

Yesterday, the First United Methodist Church in Columbia had there 2nd annual CHILDREN's DAY OF PRAYER. Two of the prayer boards were pictures of children that have passed away in the last year. The prayer requests on the boards were for their families during this special, but difficult time of year. The song below will touch your heart. We all have our daily struggles(my third grader is not doing well in school, my husband is gone to work when I'd prefer him to be home to see the children sing in church, go get our Christmas tree,etc) but if we really compare our struggles to the ones who have lost children, ours does not seem so bad.

These are One Last Christmas Lyrics by Matthew West

It’s the news that no one hopes for,
Every parent’s greatest fear
Finding out the child you love so much
Might not make it through the year
Now the thought of spending Christmas
Without him just feels wrong
They’ve been praying for a miracle,
Now they’re praying he can just hold on

[Chorus]
For one last Christmas, one last time,
One last season when the world is right,
One more telling of the story,
One more verse of Silent Night,
They’d give anything so he could have
One last Christmas.
courtesy of OriginaLyric.Info
Middle of September
Still seventy degrees
Daddy climbs up in the attic
Brings down candles
Hangs the lights on all the trees,
Then the neighbors started asking
And pretty soon word got around
First it was the neighborhood,
Before too long they lit up that whole town.

[Chorus]
For one last Christmas, one last time,
One last season when the world is right,
One more telling of the story,
One more verse of Silent Night,
They’d give anything so he could have
One last Christmas.

Twenty-seventh of October,
His time was wearing thin
Friends and family, even strangers
That they didn’t know brought presents in
He was weak but he was smiling
Like there was nothing even wrong
They said he wouldn’t make it,
Looks like he got to see it after all

[Chorus]
For one last Christmas, one last time,
One last season when the world is right,
One more telling of the story,
One more verse of Silent Night,
They’d give anything so he could have
One last Christmas.

Original Lyrics Matthew West – One Last Christmas

October

2010-10-29T04:17:00.000-07:00

This has been a hard month, as it has been for the past three years: October '08 we found out Mackynlee's diagnosis; October '09 we had her 2nd heart surgery, followed by seizures, a couple of MRI's, almost lost her, and after a long hospital stay coming home on a feeding tube for 6 months; Oct '10 she had her oral surgery(6 teeth removed and several capped) and now ear infections(that started while we were out of town) in both ears, a rash from the meds, a steroid shot, etc. wooooo!! Just exhausting!! I am so glad November is almost here. I am praying November will be better for our baby girl and us too. For some reason October is just not a good month for the Bedwells.

I have been feeling very overwhelmed lately. Mark is out of town(but will be home tonight for a few days.) Keeping up with Shelby's studying, the baby being sick, I've not even unpacked from our get-a-way last weekend, etc. All of you know how life can be sometimes!!! My devotion this morning was on "Perfect Peace". I just wanted to share!

Matthew 19:26
But Jesus looked at them and said, “With man this is impossible, but with God all things are possible.”

Perfect Peace

There once was a King who offered a prize to the artist who would paint the best picture of peace. Many artists tried. The King looked at all the pictures, but there were only two he really liked and he had to choose between them.

One picture was of a calm lake. The lake was a perfect mirror for peaceful towering mountains were all around it. Overhead was a blue sky with fluffy white clouds. All who saw this picture thought that it was a perfect picture of peace.

The other picture had mountains too. But these were rugged and bare. Above was an angry sky from which rain fell, in which lightening played. Down the side of the mountain tumbled a foaming waterfall. This did not look peaceful at all.

But when the King looked, he saw behind the waterfall a tiny bush growing in a crack in the rock. In the bush a mother bird had built her nest. There, in the midst of the rush of angry water, sat the mother bird on her nest ... perfect peace.

Which picture do you think won the prize?

The King chose the second picture.

Do you know why?

"Because," explained the King, "peace does not mean to be in a place where there is no noise, trouble, or hard work. Peace means to be in the midst of all those things and still be calm in your heart. That is the real meaning of peace."

Addendum -- John 16:33 (NLT) "I have told you all this so that you may have 'peace' in me. Here on earth you will have many trials and sorrows. But take heart, because I have overcome the world."

EveryHeartHasAStory

2010-08-28T05:27:00.000-07:00

I am participating in a blog event with other heart families. In this blog, I will retell our story from the beginning. I will try not to get to detailed neither too emotional.

July 2008: I go in for my yearly check-up to find out we were expecting our third child. BIG SURPRISE!!! At that time, we had a 6 year old(Shelby Grace) and a 1 and a half year old(Connor Mark) and were very content with the two children. We had picked and joked about having a house full of babies, but in reality, not ready for another baby. Oh well, ready or not, here she comes with many life lessons to teach us, our family, and many, many others.

October 2008: We were disappointed when my husband had to go into work and could not go to the ultrasound appointment to find out if he would get another baby girl or baby boy(that was all we were expecting to find out). So, he would call an hour after my appointment to find out what his special bundle of joy would be. My mom and Shelby(the proud big sis) accompanied me for the ultrasound. The tech went and got the doc during the ultrasound. All the two of them could tell me was they could not find all four chambers of our baby girl's heart. I asked over and over, "What does that mean?" Doctor Pace replied, "Go to Doc Perry(Diagnostic Specialist) in Jackson. You will probably deliver there and be transported out of state for surgery on her heart."

After leaving the office, I was in a daze. Shelby had an appointment across town with her pediatrician to check her back. Her gymanstic's teacher thought she may have scholiosis. While headed there, Mark called. I remember our conversation being very short. I was crying telling him what was going on. I know he felt so helpless not being home. I sat in the parking lot while my mom took Shelby in for her test. I called a friend who works as a postpardum nurse. She said, "I've never taken care of a baby that didn't have all four chambers of his/her heart." I interrupted that as: My baby will die. I called another friend to have her search the internet for info about babies without all four chambers. I then got myself together to join my mom and Shelby inside the doc office to learn that sure enough, Shelby has scholiosis. I remember nothing else from then to my doc appointment with Dr.Perry.

5 days later: Mark and I go to Jackson hoping to find out everything was fine and this was all a mistake. Dr. Perry confirmed what Dr. Pace found. I sat there crying, not understanding why, and shaking. Dr. Perry told our options: #1 abortion #2 nothing(baby would die shortly after birth) #3 have more test and meet with a fetal heart specialist. I cried and cried as Mark answered and I shook my head in agreement. No way would we have an abortion and no way would we do nothing. #3 was the path we would take(no matter what). Dr. Perry performed an amniocentsis right then. It didn't hurt one bit!! I even watched it on the screen. I guess it didn't hurt because I just wanted to know every detail about my baby girl possible.

2 Weeks Later: I remember crying a lot, having a feeling of emptiness inside, staying on the computer to find out as much info as possible(leading me to more unanswered questions), praying nothing else was wrong with her, and not wanting her to die. Finally the call came from the specialist. PRAISE THE LORD, nothing else showed up. We went back to Dr. Perry's office to meet Dr. Shore(the heart doc sent from Heaven to MS). She gave us hope. Our baby had an 85% chance of surviving. We would deliver at UMC then fly to CHOP(Children's Hospital of Philadelphia) for surgery.

December 08 to February 09: I experienced many doctor's appointments(never alone if my husband couldn't go, my friends went with me), lots of emotions, and many kind actions from family and friends as we awaited our baby's arrival. Church was the most difficult place for me to go during these months. Work was a "safe" place, I could escape and avoid people, but not at church. Mark tried to get the word around for no one to ask me anything about the baby. He let people know he would answer any/all questions. All of our church family was so concerned, I would cry if someone just looked at me, patted me on the back, or hugged me. I hated crying in front of my other two children. They did not understand, even though they prayed for their baby sister's heart all of the time. Right before Mackynlee was born, our church had a prayer vigual for us. It meant so much. Around 25 special, Godly, women joined me at the alter for prayer. That relieved so much stress. They will never know how much it meant to me. Words cannot express it. A group of our friend had a get together in our honor the weekend before Mackynlee was born. 200+ friends and family joined together in love and support. It was so touching. Over $10,000 dollars was given to us to help us through this difficult time. We have so many amazing friends!!! We were/are so blessed. I was teaching at two schools, West Marion and East Marion during my pregnancy. Many people from both schools gave us money, gifts, cards, etc. EM gave me a baby shower. It meant so much. I hadn't even known these teachers very long. It would take about 10 pages to list all of the acts of kindness shown to us during the months awaiting our baby girl's arrival. I just want everyone to know once again how much each and every act meant to us.

Monday, February 23: We headed to Jackson for an amniosentisis(that hurt sooooo bad) to see if our baby girl would be born that day(at 37 weeks gestation) or if we would have to wait another week. Many family and friends joined us. I was admitted to the hospital late that afternoon, but no baby. Baby decided to come around 1:30ish Tuesday, February 24th. She cried as soon as she was born. We were in shock. We did not expect that(not really sure what we expected). Just minutes later she was intubated by the team from the NICU. All of our visitors and Shelby got to take a glimpse at her as they pushed her to the NICU. This would be Shelby's only time to see her baby sister until weeks later.

An hour or so after birth, we went to see her in the NICU. Dr. Shores checked her out and let us know we would fly out the next day. She had contacted CHOP. I didn't cry when I left her in the NICU. I was just so thankful to have my baby alive. It was okay that she was in the NICU and not in my arms.

Wednesday/Thursday: The next day, the baby and I flew medical flight to Philadelphia, PA. We got there at 3ish in the morning. I slept til 9ish. When going to her pod that morning, I was bombarded by doctors asking me questions, telling me her ears looked low, her nipples looked too far apart, etc. I so needed Mark with me. I would go to my sleep room and just cry, shake, try to breathe. Mark arrived around 7ish. We met at the PRMH. We got settled in and took a taxi back to the hospital. We spent some time with her and talking with the nurses.

Friday: We got to the hospital early that morning. We were allowed to hold Mackynlee before surgery. Then we had to give her over to the surgeons. Dr. Gaynor met with us in his office before going into the OR. Nurses updated us every little bit. Finally it was over and Dr. Gaynor met with us again with a really good report. Everything seemed to be a success. Thank the Lord.

Friday Night: Mark and I stayed at the hospital in a sleep room. I went to check on baby in the middle of the night to find that she was bleeding badly. Many doctors were around her bedside. Finally the bleeding was under control. We spent the next three weeks in the hospital. She had fought off infections, jondus, and overcome her feeding issues.

The most difficult part for me was being away from my other two children. Our good friend, Keli, flew them to Philly to spend a weekend with us. Shelby got to spend time with her baby sis. They loved the PRMH. We so enjoyed them being with us, but boy was it a tear jerker when it was time to put them in that taxi to head to the airport.

March 23: We brought our baby girl home with no feeding tube. She was on 7 or 8 meds, we had many doc appointments, but other than that we had a "normal" baby. I spent as much time as possible sitting and holding her. I was so thankful for my baby. I stayed home for the remainder of the school year. We were unsure of our plans for the next school year, but God knew all along what would happen.

July 2009: The most amazing lady came into our lives. She was an answer to prayers and sent by God. Her name is Ms. Sharon Porter. She is a retired RN. She stays with our children while we are at work. She loves them and they love her. She is a part of our family now. She stayed right by our side during the complications after surgery #2. She goes to every doc appointment with us. She is a true blessing to all of us. Our children call her Meemaw.

September: Surgery date #2 was quickly approaching. We went back to CHOP for 3 weeks. This time we faced several complications after the surgery. Mackynlee had seizure activity and a brain bleed. We came home only to be admitted back into the hospital after a few days of enjoying home life again. We ended up in the PICU(a story I'm not going to rehash). We stayed at UMC two weeks and came home with a feeding tube. This was a difficult time for us. Mackynlee had the feeding tube until March. She vomitted a lot. The tube would come out a lot. I cringe at remebering all of the times we had to hold her down and put that down her nose!! Those months were full of stress. It really took a toll on all of us. Mark and I took our stress out on each other many times. I don't think we realized just how stressful it was at the time. Looking back, I don't know how we funtioned. God carried us through and didn't give us time to think about it. I praise His name today!! Everything is pretty "normal" around here these days. We are so blessed to realize how wonderful "normal" is and to enjoy every second we are given here on earth. Macynlee's third surgery will more than likely be in 2012. We plan to go back to Dr. Gaynor at CHOP. We have already turned this over to God. We will not waste a day worrying about what will happen.

February 2010: Mackynlee's First Celebration of Life takes place!!! Our friends Shayne and Kathryn Lowery invite many guests to their home to help us celebrate. $1,000 dollars was donted to C.H.I.N. in Mackynlee's honor. You can see pics of this celebration on my carepage. I'll try to update the blog with pics soon. Everyone wore red!! It was awsome.

UPDATE ON MACKYNLEE: She is walking everywhere. She thinks she is as big as her sister and brother. She says one and two words at a time. She loves brushing her teeth. She takes her meds each morning and evening like a champ!! She is the most loving baby in the world. She'll hug us and pat us on the back as she is hugging. She as the best sugar in the whole world. She sleeps in the bed with us and I wouldn't have it any other way. We don't have to go the brain doc or heart doc as often as we once did. Now our appointments are every three months. She still does not eat as well as she needs to, but we see improvement from day to day. Thank God for pediasure!!!!

Thank you God for giving us this blessing. Through her, You have opened our eyes to all of our blessings and made us aware of the many struggles people face every day. Thank You for all of the people we have met along this journey. Thank you for strengthening our marriage through this. Many marriages are torn apart when faced with medical challenges of children. Thank you for blinding us during our storms to help us make it through. We give you the praise, honor, and glory for Mackynlee.

अनोठेर गुड रिपोर्ट

2010-07-09T06:30:00.000-07:00

On Wednesday, we went to a pediatric neurologist. This was the first time I met him, but he remembered us well from our stay at UMC in October. He had also read up on all Mackynlee's history and was very interested in anything I had to say. He was amazed at how well Mackynlee is developmentally, etc. We are taking her off of her seizure medication. Please pray this goes well. I so want her off of it, but it makes me a tiny bit nervous at the same time. He feels that her tongue problem will slowly continue to get better. We will just keep poking food at her. She will have a ct scan done July 22nd. She will not be put to sleep for this(the doc remembered and what he did not remember, I told him, how we came close to losing her after her last MRI when she was put to sleep). So he is 100% against putting her to sleep for any testing at this time. The ct scan is going to show if the bleed on her brain has completely gone away. This is so we can start her back on her aspirin. Her heart needs this med, but if she has bleeding still, her brain does not need it. I know all you heart moms and anyone else that has experienced medical things with loved ones know how this situation can be.

I know we have all read this poem many times, but it continues to come to my mind when I think of Ms. Peggy Stringer and I just wanted to share it. Please continue lifting her and her family up in prayer. Continue praying for Doug Turnage, Rhonda Pittman, Addyson Fulbright, Bo Garner, Keli Williams and her new baby Griffin.

Our Church Mission Trip next week
Our schools
Our churches: pastors, ministers of music, ministers of youth, other staff, members of all ages

Footprints in the Sand

One night I had a dream --
I dreamed I was walking along the beach with the Lord, and
Across the sky flashed scenes from my life.
For each scene I noticed two sets of footprints in the sand;
One belonged to me, and the other to the Lord.
When the last scene of my life flashed before us,
I looked back at the footprints in the sand.
I noticed that many times along the path of my life,
There was only one set of footprints.
I also noticed that it happened at the very lowest and saddest times in my life
This really bothered me, and I questioned the Lord about it.
"Lord, you said that once I decided to follow you,
You would walk with me all the way;
But I have noticed that during the most troublesome times in my life,
There is only one set of footprints.
I don't understand why in times when I
needed you the most, you should leave me.
The Lord replied, "My precious, precious
child. I love you, and I would never,
never leave you during your times of
trial and suffering.
When you saw only one set of footprints,
It was then that I carried you."
by Mary Stevenson

Upcomingappointments

2010-06-15T03:01:00.000-07:00

Miss Mackynlee is doing great! She is such a momma's baby and I am loving it. She loves both Shelb and Connor, but she and Connor really look out for each other. They are continuously hugging each other. He calls her BooBoo. Yesterday she walked almost all of the way across the living room. Connor was soooo proud of her. I pray when my children grow up they will continue to be close and continue to love each other as they do now.

Next week we will start our visits to Mackynlee's doctors. Please begin praying all news is positive. God is in control. I know His will will be and not mine, but it has been so so awesome not to go to a doctor's appointment for a couple of months. As I was watching Mackynlee sleep and saying some prayers, I thanked God over and over for allowing the last few months to be "normal" around here. She has not vomited since the first week of May. That was so stressful on all of us. Looking back on that time in her life, I do not know how I continued to function. I pray those days are gone for good!!

Prayer Requests:
Mackynlee

Doug Turnage(He had a four wheeler wreck on Memorial Day. There has been many ups and downs. He has had several brain surgeries. Please pray for God to heal him and to be with his family during this difficult time.)

Rhonda Pittman (breast cancer)

Two fiends of mine who I will not name: one is having marriage problems the other is medical concerns.

Father, I pray that You Will help me not to be so self-centered. Fill me with the desire to think of others and to help them however I am able. AMEN

A Point to Ponder... It isn't difficult to make a mountain out of a molehill-just add a little dirt.

THANK YOU LORD FOR

Thank you for this sink of dirty dishes;
we have plenty of food to eat.

Thank you for this pile of dirty, stinky laundry;
we have plenty of nice clothes to wear.

And I would like to thank you, Lord,for those unmade beds;
they were so warm and comfortable last night.
I know that many have no bed.

My thanks to you, Lord, for this bathroom complete with all the splattered mess, soggy, complete with all the splattered mess, soggy, grimy towels and the dirty lavatory; they are all so convenient.

Thank you God this finger-smudged refrigerator that needs defrosting so badly; it has served us faithfully for many years. It is full of cold drinks and enough leftovers for two or three meals.

Thank you, Lord, for this oven that absolutely must be cleaned today; it has baked so many things over the years.

The whole family is grateful for that tall grass that needs mowing and lawn that needs raking; we all enjoy the yard.

Thank you, Lord, even for that squeaking door.
My kids are healthy and able to run and play. Many children cannot.

Lord, the presence of all these chores awaiting me says You have richly blessed my family. I shall do them cheerfully and I shall do them gratefully.

Even though I clutch my blanket and growl when the alarm rings...
Thank you, Lord, that I can hear.
There are many who are deaf.

Even though I keep my eyes closed against the morning light
as long as possible...Thank you, Lord, that I can see. Many are blind.

Even though I huddle in my bed and put off rising...
Thank you, Lord, that have the strength to rise.

There are many who are bedridden.

Even tough the first hour of my day is hectic
with socks that are lost, toast that is burned,
tempers that are short, and my children that are so loud...
Thank you, Lord, for my family.
There are so many who are lonely.

Even though our breakfast table never looks like the pictures
in magazines and the menu is at times not balanced...
Thank you, Lord, for the food we have.
There are many who are hungry.

Even though the routine of my job is often monotonous...
Thank you, Lord, for the opportunity to work.
There are many who are jobless.

Even though I grumble and bemoan my fate from day to day
and wish my circumstances were not so modest...
Thank you, Lord, for life.

Colossians 3:17 And whatever you do, whether in word or deed,
do it all in the name of the Lord Jesus, giving thanks to God
and the Father through Him.

Psalms 100:4 Enter His gates with thanksgiving and His courts
with praise; give thanks to Him and praise His name.

Summertime

2010-05-29T03:51:00.000-07:00

We are finally out of school!! YAY!!!

Mackynlee has not been to a doctor in two months (believe that or not). We will go to the pediatrician and the heart doc during the month of June. I'm not sure when we will go back to the neurologist. We do not have a scheduled appointment. I guess I will call sometimes in the next couple of weeks to see if we need to meet with her. I would love to touch base with everyone this summer, and not have any appointments during the beginning months of school. We will see if this goes as I would like it to.

Mackynlee's weight is 20lbs!! FINALLY!! Her eating is still not "normal", but we are definitely seeing progress. She has around 40 ounces of pediasure a day and has not thrown up in almost a month. Pray this continues!!! It is stressful around here when she goes through a throwing up spell.

This morning, my children and I are going to join others from our church to go out into our county to invite children to VBS. I wanted to share the following prayer with you. I know many of you will participate in VBS this summer. It is so easy to get frustrated with it, but we need to lean on GOD and pray for a positive attitude. (I'm speaking to myself!)

Vacation Bible School Prayer

1. Lord, help us to dedicate our hearts to a time of personal relationship with you, and to hear what you desire of us as we prepare for VBS.

2. Lord, Thank You for this day and for the gifts you have given to us and called us to use for Your Glory through VBS Ministry this summer.

3. Lord Jesus, we pray that Your Holy Spirit will lead us and guide us through this day and the days to come as we prepare for VBS

4. Lord, Thank You for sending Your Holy Spirit to be our Helper and Best Friend.

5. Today we pray for our fellow servants, as they spend time in personal conversation with You, Lord. Give them Your plan for VBS and Your words for the Children.

6. We love You, Lord, and we lift our love to You. Thank You for first loving us. We pray that You will help us as we show that love to Your children during VBS

Believe In God!

7. Today, Lord, we totally rely on You to lead us. Just as our bodies crave oxygen, our hearts yearn for You to lead us in this exciting Ministry.

8. Lord, today as we think of all the plans and details swimming around in our heads, may we remember that You are the God of All Things Impossible. Give us the strength as we trust You with the details.

9. Lord, today as we think of how we were chosen for this Ministry, please be with all the others You have called to do each and every position of our VBS Ministry. No matter what the position, all are equally important and could not function without the others. Lead them to us, to give of themselves for Your Glory this summer.

10. Lord, so many times as we look at all we have to accomplish, and we are so overwhelmed. Remind us to hold unto Your hand and to let You walk beside us as we continue preparing to touch the hearts of the children with Your love this summer.

11. Remind us, Lord, today, to trust You with all our hearts, with all our minds, and with all our strength and to learn not to lean on our own understanding. We can do all things through You, Lord, who strengthens us.

Obey God!!

12. Today, Lord, we obey Your call to go out into the world and share the Good News of Your Gospel by sharing Your live with children, this summer at the VBS.

13. Lord, help us as a Church and as individuals to stand against temptations, against skeptics, and against doubt, and to continue to bring the VBS to children and families this summer. Protect us from the world and help us to keep our eyes and hearts focused on You.

14. Lord, help us to continue to give VBS to the children Your Way, not necessarily our way.

15. Lord, help us to seek Your vision and Your plans for our VBS this summer.

Trust God!

16. Lord, thank you for wrapping Your loving, protective arms around us, always.

17. Lord, we pray today for all the Station Leaders, Crew Leaders, Kitchen Staff, Scenery Designers, Publicity Coordinator and Crew and all the VBS staff, that WILL serve You this summer at VBS. Thank You for them.

18. Lord, today we thank You for ALL the financial and prayerful support You have given and that You will continue to give to our VBS this summer.

19. Lord, thank You for the Parents who trust us with their children this summer. Please help them to feel the touch of your love through our VBS and our Church this summer.

20. Lord, thank You for ALL those You have sent and will continue to send to support us in remembering and accomplishing all the details for bringing the VBS to ALL the children and families that will attend this summer.

Love God!

21. Lord, we may look ordinary, but we carry a Priceless Treasure within our innermost being, the presence of Your Spirit. Give us the courage to share this priceless gift everywhere we go.

22. Thank You, Lord Jesus, for giving Your Life for us! Thank You for dying to save us. We truly are more special than we could ever imagine, because of what you did for us.

23. Thank You, Lord, for giving us the unique opportunity of sharing our ALL with You, the King of the Universe. Oh, how we love You!

24. Thank You, Lord, for making us Your Children. Our wonderful Father, You are always there when the rest of the world seems to turn away from us.

25. Lord, we love You with all that we are. Help us to show You and everyone around us, this very fact, in everything we say and do; in every way we live our lives.

Share God's Love!!

26. Lord, help us to share Your Love even if it stretches us way out of our Comfort Zone!

27. Lord, help us to reach out and touch the hearts and souls of our fellow VBS workers and staff, with comfort, support, and prayer.

28. Lord, remind us to give hugs of Christian love to those around us; through our actions and at times literally with our arms. Let us be Your arms.

29. Lord, help us to be Your hands today, as we spread Your Love to everyone within two feet of us, in every direction.

30. Lord, continue to be with us as VBS quickly approaches. Prepare our hearts and minds, and the hearts and minds of those we touch through VBS this summer.
In Jesus Name we pray, Amen!!

Remember what we can do...
If we have the Lord with us!
Matthew 17:20

HAPPYAGAIN

2010-04-23T07:28:00.000-07:00

I wanted everyone to know that things are looking up for Mackynlee. She has increased her intake drastically over the past two days. Yesterday she exceeded the amount that the doctors have set for her minimum. She has gained back some of the weight that she had lost. Keep sending up prayers that we will not have to divert back to the feeding tube.

Mark and I are getting a night away tonight. It is the first time he and I have been alone overnight(with the exception of when Mackynlee was in the CICU and we were at the PRHM, I don't count those nights), since March '08. Thanks sooooooo much Meemaw(Ms. Sharon Porter) for camping out with the three musketeers while we are away. You are the best!! I would be in a mental institution without you. That is not a joke either.

I wanted to share the lyrics of this Christian song titled: God Will See You Through

Since I saw you last I've had some ups, some downs, some hurts, some pain- I won't lie, I needed God to come revive my soul again- But it never got so bad that I gave in- in my weakest hour the Lord- He stepped right in-
So my testimony is God will see you through
So my testimony is God will see you through

It's not easy when you try each day to smile and hide your pain
and the devil does his best to magnify your every fear, then you try your best to stand but still you fall, but I thank God that grace and mercy heard my call-
So my testimony is God will see you through
So my testimony is God will see you through

Bridge:
Don't stop prayin' - you can make it - don't stop believin' -
you will receive it

Lead:
I've been through the fire- I've been through the flood- but He promised never to leave me- oh never alone
So my testimony is God will see you through
So my testimony is God will see you through

Vamp:
He'll see you through
He'll see you through

AnotherRollerCoasterRIde

2010-04-20T12:48:00.000-07:00

We are still around, just cannot seem to find the time to post lately. The last week has been pretty difficult. Mackynlee has lost a pound. We may be facing the "feeding tube" again. I cannot express to you what the thought of that does to me. She has also had some major throwing up issues. The weight loss was before the throwing up set in. We are not certain if she had a virus or what was going on. Thank God she has finally able to take her pediasure again and is keeping it down. We will know more about the feeding tube by her weight at the beginning of next week. I know God does not put any more on you than you can handle, but lately I am so not sure how much more I can handle. If we have to do the feeding tube again, I will need more prayer than ever before.

Life is challenging. Life with a sick child is overwhelmingly challenging at times. (Not even sure overwhelmingly is a word.) It is always "what if this?" "what if that?" "should I go home from work?" "should we wait it out?" "should we call the doctor?" "should we make that dreaded 2 hour drive to Jackson?" etc?????????

Say some prayers for our Olivia Torian. She is having a feeding tube put in surgically next month. Tara: Take notes, we may be right there behind yall.

Ten Days Without the Tube

2010-03-17T06:48:00.001-07:00

Thanks Debbie and Kathleen for the info. I will start adding coffee creamer today!! I go to the heart doc next week. I will ask about the duocal. I have been told about the duocal, but last time I mentioned it to my heart doc, she frowned about it. I think it had to do with her intake of liquids. She has to have so many ounces of fluid per day for her shunt to work correctly. She is taking enough fluids now. Last time we took the feeding tube out she averaged 18 to 20 ounces a day. This time she is averaging 23-26 ounces a day.

How much coffee creamer Debbie? As much as she will tolerate? Or is there a formula?

We give all of the praise and glory for this answer to prayers to God our Father! We pray that He will continue to allow Mackynlee to increase her feedings and gain weight without the support of a feeding tube.

Ms. Peggy has been moved to a room and her feeding tube has been removed!! Praise God!!

Continue praying for Rhonda Pittman(breast cancer), Micah Goar(she will be having a baby tomorrow), Tammy McNabb(she will be having a baby before this month is over), Joy Stringer and new baby boy, Bill Morris(in FGH), Ms. Earlene Mitchel(in hospital), and all others that are in need that I am not aware of. God knows.

Last night at our BYW meeting, we focused on praying for the schools. Please lift up our local schools this week. Columbia Public Schools, East Marion, West Marion, and Columbia Academy. Pray for our administraters, our teachers, our janitors, our bus drivers, our cafeteria workers, our parents and students.

"Make a joyful noise unto the LORD, all ye lands. Serve the LORD with gladness: come before his presence with singing. Know ye that the LORD he is God: it is he that hath made us, and not we ourselves; we are his people, and the sheep of his pasture. Enter into his gates with thanksgiving, and into his courts with praise: be thankful unto him, and bless his name. For the LORD is good; his mercy is everlasting; and his truth endureth to all generations. "
Psalm 100:1-5

What does God want from us? According to this scripture He wants us to be joyful, recognize Him as our Creator, be thankful, serve Him, and praise Him. He wants our joy to be full. He wants us to be happy.

It tells us to keep our hearts and minds on Him. Throughout the day we can praise Him and thank Him with words and song. He is deserving of our praises. He loves us more than we can comprehend. He is waiting patiently for us to acknowledge Him. He is waiting patiently to pick us up when, through our own efforts, we fall flat on our faces.

Have you ever broken open a piggy bank expecting to find more money than what you had put in it? Of course not! God has given you life and His love. Now he is waiting for you to put in your share. Then, once you begin giving back to God He will pour out the blessings on you. Luke 6:38 tells us, "Give, and it shall be given unto you; good measure, pressed down, and shaken together, and running over, shall men give into your bosom. For with the same measure that ye mete withal it shall be measured to you again." In other words, you will receive more than you give. Your piggy bank will have more in it than what you put there!

God has wonderful things for us. He is holding out His hand. It is up to us to take it.

2010-03-15T12:30:00.000-07:00

Sorry I have not been faithful in keeping up to date on Ms. Peggy's condition. As of yesterday, she had been taken off of the vent and was talking a little. Family is hoping she will be moved out of the ICU by tomorrow. This is all info from Sunday. I have not heard an update from today. I pray all is still going well. This is definitely a miracle from God.

Report on Mackynlee:

Last Sunday, 8 days ago, Mackynlee pulled out her feeding tube. We have not put it back in yet. (Do not report this to any of her doctors!! LOL) She weighed 17lbs and 12 ounces before the tube came out. Her weight has fluctuated up and down this week. She weighed 17lbs and 11ounces yesterday. She is not gaining as quickly as she would if we were tube feeding her, but she is holding her own. That is a major improvement from the last time we took out her tube. The last time, she lost weight quickly and was very fussy. She is still acting like her normal self. I feel as if she is getting satisfied, but still not taking in enough on her own to gain weight. Heart mom that have gone through this::: Any tricks to try to get her to gain weight? I am changing her slowly from 27 cal formula to pediasure. The pediasure has 30 cals per serving. That could help just bit with her weight gain.

Everyone is invited to our house Saturday March 20th. From 3 til 5 we are going to eat and socialize. This special time is to support Rhonda Pittman in love and friendship as she goes through a difficult time in her life battling breast cancer. Hope everyone can attend

Monday...................

2010-03-01T06:34:00.000-08:00

Hello everyone. The party was excellent. We raised a thousand dollars for CHD research. Loved everyone wearing red.(I put a pic on my carepage. www.carepage.com/babybedwell. I will try to download pics to my blog later. I have not done this before.) I have so many people to thank for helping make this celebration such a success.

Kathryn and Shayne Lowery
Stacy and Susan Reagan
Shelly Anthony
Cindy Stogner
Jennifer Lowery
Trevor and Krystal Graves
Ms. Diane Bedwell
Ms. Diane Gibson
Ms. Faye Hicks
Susan Johnson
Ms. Susan Slocum
Sarah Blakeney
Julie Howdeshell
Ryan Stringer
Dillon Reid
Marie Haney
Kylan Reid
Jay Reagan
Bro. Tim Parker
Tammy McNabb
Wendy Hammond
Donna Ratliff
Keli Ellzey
Foxworth First Baptist Church
(Hope I did not leave any one out. If I did, don't tell me. But, please forgive me. LOL)

We are so blessed to have so much support from our friends, family, and community. We love all of you.

Please rememeber Barry and Joy Stringer in your prayers this week. Also remember Tate and Lauren Robertson in your prayers. Both families are expecting a new baby on Wednesday. This poem is dedicated to them.

Little baby on the way,
Getting bigger every day,
Kicking mommy here and there,
God please listen to our prayer.

Keep our baby safe and strong,
Let his time with us be long,
Help us teach him right form wrong,
And we shall praise thee all day long.

This little one, though not yet here,
Is loved so much, has grown quite dear.
Delivery time is growing near,
That's why we pray our plea you'll hear.

Please help up Lord, we pray to Thee
With thankful heart, on bended knee,
To raise this child that he might be,
A happy child because of me.

Please remember a friend of a friend, Billy Morris. He is in ICU at Forrest General Hospital. Mark's cousin, Carolee Smith is in the CICU at Forrest General. She suffered a massive heart attack last week. She is scheduled to have surgery Friday. My Uncle LeRoy Patterson is in the hospital in Jackson. He has blood clots in his legs and in his lungs. Pray for the Harper family, Angela Harper's father passed away. Keep all of these in your prayers.

Continue to remember our friend Rhonda Pittman who has breast cancer. We are planning a party for her at our house on March 20. Mark your calendars. I will let you know more info about this soon.

As I was looking for a bible verse, story, etc. to end with, a friend of mine text me the following verse. I will now share it with you.

I CAME SO THEY CAN HAVE REAL AND ETERNAL LIFE MORE AND BETTER LIFE THAN THEY EVER DREAMED OF. John 10:10

Happy Birthday

2010-02-24T07:08:00.000-08:00

The following comment from Teri says it best!!!

by Teri Hendrickson
I can't believe it's been a whole year already...and only one year?! Funny how fast and slow 365 days can go. Happy Birthday little Miss Mackynlee!

Our Precious Daughter

we celebrate your birthday, as you turn one today,
but we have got the gift, just the perfect gift,
that on this very special day, God gave away,
a gift of love from up above, so unique and so rare.

God has specially made you to the very tip of your nose,
as precious as a flower, as tender as a rose.
fulfilled and blessed our lives we have and all because of you,
as sweet as honey, so innocent and pure.

we watch and pray as you grow,
in love and in faith, in beauty and in grace,
you bring us joy and pure delight,
just to gaze upon your lovely face.

our hearts you keep warm and are with you wherever you may go,
and as you go on life's journey, only happiness may you find,
you are the joyful moments through our sorrow,
you are our hope and promise of our tomorrow.

'cause you are our pride, our unconditional love we pledge,
'cause you are our joy, our undivided bond we cherish,
'cause you are our sunshine, our embrace is your shield through the rain,
'cause you are our little girl, our hugs and kisses will take away your pain.

we asked God for a flower and He gave us a bouquet
we asked God for a minute and He gave us a day
we prayed to God for true love and He gave us that too
we prayed to God for an angel and He gave us you.

May God bless you dear angel
especially on this day
that marks your birth,
for all the special ways you bring
a bit of heaven into our world.

may God bless you, Today, Tomorrow and Always
in Peace in Health in Happiness and in Love.

with love
Mom and Dad

I have been working on a slideshow of this past year. My favorite section of the video is about friendship. We appreciate all of our precious friends (new and old) for supporting us this past year. Mark and I are so blessed to have so many true friends. We live in a wonderful community. We love all of you. Words cannot express it enough. The following song is on the slideshow. This is dedicated to everyone that has helped make this past year a little less stressful for us.

Find Out Who Your Friends Are

Run your car off the side of the road
Get stuck in a ditch way out in the middle of nowhere
Or get yourself in a bind lose the shirt off your back
Need a floor, need a couch, need a bus fare

This is where the rubber meets the road
This is where the cream is gonna rise
This is what you really didn't know
This is where the truth don't lie

{Chorus}
You find out who your friends are
Somebody's gonna drop everything
Run out and crank up their car
Hit the gas, get there fast
Never stop to think 'what's in it for me?' or 'it's way too far'
They just show on up with their big old heart
You find out who your friends are

Everybody wants to slap your back
wants to shake your hand
when you're up on top of that mountain
But let one of those rocks give way then you slide back down look up
and see who's around then

This ain't where the road comes to an end
This ain't where the bandwagon stops
This is just one of those times when
A lot of folks jump off

{Chorus}

When the water's high
When the weather's not so fair
When the well runs dry
Who's gonna be there?

{Chorus}

You find out who your friends are
(yeah, yeah)
You find out who your friends are

Run your car off the side of the road
Get stuck in a ditch way out in the middle of nowhere
(Well man, I've been there)
Or get yourself in a bind lose the shirt off your back
Need a floor, need a couch, need a bus fare
(Man, I've been there)

Man, I've been there
Oooh yeah.

REMINDER: Mark your calendars for 3-5 Saturday. It is going to be a great celebration. A special thank you to Kathryn and Shayne. They have both been working so hard on getting everything ready. They are the best!! We love yall!!

1st celebration of life/CHD Awareness

2010-02-23T06:47:00.000-08:00

Mackynlee's 1st bday is tomorrow. Her celebration is Saturday from 3 to 5 at Shayne and Kathryn Lowery's. Everyone is invited to attend. No gifts please. There will be a basket for donations if anyone would like to donate money that will go toward CHD research. Everyone is asked to wear red to this party.

I am working on a video of Mackynlee's first year of life. I have posted messages to several of you heart mom's on fb about this. I want pics of children that we have met through blogspots along this journey. I am making a special section in the slideshow that is in honor and memory of special children and their families that have fought a medical battle along side of us this past year(does not have to be just heart problems). Your support means so much to us. I would love for you to send a pic of the child and a family pic. Please include his/her diagnosis and any other info about child. Also, I need the jpeg if possible. I need this asap since the party is Saturday. If you send me a pic to use, I will mail you a copy of the slideshow. My email is markbedwell@bellsouth.net.

New Hope

2010-02-03T06:57:00.000-08:00

As all of you know, this is Mackynlee's birthday month. I have been thinking so much about this time last year, her birth, and the two surgeries she went through. She is a true miracle from the Heavens above.

We are planning her birthday party for the last Saturday of this month. Everyone is invited to join us for this celebration. I will be giving more details on this event soon.

"Mary set out in haste to a town of Judah, where she entered the house of Zechariah and greeted Elizabeth. When Elizabeth heard Mary's greeting, the infant leaped in her womb, and Elizabeth, filled with the Holy Spirit, cried out in a loud voice, 'Most blessed are you among women, and blessed is the fruit of your womb. And blessed are you who believed that what was spoken to you by the Lord would be fulfilled.'

And Mary said, 'My soul proclaims the greatness of the Lord; my spirit rejoices in God my Savior. For he has looked upon his handmaid's lowliness; behold, from now on all ages will call me blessed. The Mighty One has done great things for me, and holy is his name.'"
Luke 1: 39-49
God's greatest gift to a man and woman is the gift of a child. A mother is touched by the love of God in a unique way when a child comes to life within her. When her child stirs in the first movements of new life, she becomes part of God's greatest miracle. Her child is completely new, yet so close to her that she can hardly distinguish her child from herself. This child makes her life a circle of love. It is a circle made complete by God, and as long as God is present, this circle of love will be unbroken.

--------------------------------------------------------------------------------

"God our Father, you bestow your greatest blessing on us when you call upon us to take part in the miracle of bringing new life into the world. You fill us with wonder as we watch this life grow from its very beginning. And you teach us to love as we love this child whom you entrust to our care. We give you thanks for this gift of life, and as we cherish this gift we ask you to encircle us always with your fatherly love."

Wanted to touch base with everyone. Our miracle Mackynlee now weighs 17 lbs!!!!!!!!! Way to go!!!!!!!!! Yesterday we had an appointment with her neurologist. She gave us lots of new hope. She believes that Mackynlee's feeding issues do relate to her seizure activity. We are going to be changing seizure medications. This is going to take 40 days. It is a slow process. Doc believes within a couple to three months our baby will be eating with out a feeding tube!! Keep the prayers going up. This would definitely be an answer to our prayers. Yesterday's appointment was a confirmation from God that we did the right thing by not preceeding with the peg tube surgery. I know many heart babies have difficulties eating, and I can accept that her eating problems are heart related. It is just that her tongue does this weird thing. It has been doing weird things since before we left CHOP. Yesterday was the first time that I felt any doc was truely listening to me describing her strange tongue movements. In the past, I feel everyone has just written this feeding issue off to her heart defect. Which that still may be the case, but if changing her meds may get her eating on her own, hey that's easy enough to give it a try.

Physically, Mackynlee is crawling. Well, she crawls with one leg and walks with the other. It is too precious. She is babbling a lot. Last night Mark was picking on me and I said to Mackynlee to say "dada hush." She said "DAAA" quite loudly. She is just such a joy to us. She thinks she is just as big as Shelby and Connor. She likes to play chase, hide n seek, and the list goes on and on.

Prayer List:

My friend Rhonda Pittman had surgery yesterday. Keep her and her family in your prayers.

Our Uncle Charles is still in the hospital. He is still on a vent. He is not doing well at all. Lift him and his family up in your prayers continuously!!

I am sure there is many more, but I have to get to my sweet fifth graders. Break time is over for me.

Keeping NG Tube for now!!

2010-01-12T06:49:00.000-08:00

The GI's docs nurse called this morning and left a message. Mackynlee does have a significant amount of reflux going on. This means she needs the more complicated surgical procedure where they take part of her intestines and wrap them around her esophagus. This is what I copied about this procedure.

Also referred to as the 'wrap' or 'fundo', a surgery called the nissen fundoplication is the final option for controlling very severe GERD. Because of the possible complications that can accompany this surgery, it is typically done as a last resort. It is by no means a cure for GERD and is only performed when severe symptoms and complications persist. It involves wrapping the upper portion of the stomach (fundus) around the lower portion of the esophagus.

There are different types of fundos performed: the Nissen fundoplication refers to wrapping the fundus all the way (360°) around the esophagus. As well, partial wraps can be performed. A 180° wrap is known as a Thal or Toupet fundo and a 90° wrap is known as an anterior partial wrap.
Fundoplication surgery can be performed as an open procedure or a laparoscopic procedure. The operation is basically the same but the way the surgeon gets to the stomach and esophagus is different. A laparoscopic fundoplication means that the surgeon will use several small incisions, and special instruments, with the aid of a videoscope and TV monitors to perform the fundoplication. The recovery time from a laparoscopic fundoplication is shorter than the open procedure. There is also less post-operative pain and a less visible scar. Not all fundoplications can be done laparoscopically because of adhesions from previous operations, excessive bleeding obscuring vision, too much fatty tissue or other problems, in this case, the standard method called an open fundo would be required. Great care should be taken in finding a surgeon capable of doing the laparoscopic method.

The patient is put under general anesthesia. In the laparoscopic method five tiny incisions are made in the abdomen if the method being used is open, one much larger incision is made. With the laparoscopic method, one incision is used for the laparoscope and the other four are used to insert special devices with which to perform the surgery. Many surgeons will perform a gastronomy at the time of the fundo to place a g-tube. The decision to place the g-tube is made based on the surgeon's preferences, medical condition, the child's age and eating habits prior to surgery. Some surgeons insist on placing a g-tube when doing a fundoplication while others don't routinely place a g-tube. This will likely be in place for a few months to insist with feeding and gas bloat problems. Some children may require the g-tube be in place longer than that.

When the fundo is completed successfully it works by keeping the lower esophageal sphincter closed enough to prevent reflux while still allowing food to pass through the esophagus and into the stomach.

Children with motility disorders don't do as well after a fundoplication as children with normal gastric motility and are at greater risk of complications. Children with delayed gastric emptying will sometimes have a pyloroplasty (or pylormyotomy) done when the fundoplication is done. The pyloroplasty involves cutting the pyloric muscle (the muscle at the bottom of the stomach). This allows the food to move out of the stomach faster. The pyloroplasty comes with the risk of dumping syndrome (the stomach empties too quickly) so it isn't routinely done for every child having a fundoplication.

Indications For Reflux Surgery

Esophageal stricture
Barrett’s esophagus (an absolute indication as this may end up in cancer )
Life-threatening apnea (cessation of breathing) and recurrent aspiration pneumonia
Large hiatal hernia
Failure of maximal medical therapy to reduce severe symptoms
Severe esophagitis (esophageal inflammation)
Recurrent pneumonia, chronic lung disease, bronchospasm
Failure to gain weight

Possible Complications Of The Fundoplication
Every surgery comes with risks from the anesthetic, infection and bleeding. The fundoplication surgery can have other complications as listed below.

Inability to burp or vomit, gas bloat syndrome (gas has to pass through the gastrointestinal tract causing gas pain and bloating....this can be severe for some children)
Retching (dry heaves)
Difficulty eating after surgery because of swelling at the fundo site or food aversion (may require tube feeds until the swelling decreases)
Dumping Syndrome (the stomach empties too quickly causing nausea, abdominal cramping, retching, pale skin, hypoglycemia, and sweating. Diet changes or the use of uncooked cornstarch may help alleviate the symptoms)
Small bowel obstruction (scar tissue adhesions form in the abdominal cavity causing parts of the small bowel to stick together)
Disruption of the wrap (stitches come undone and the stomach returns to 'normal' position causing the return of original problems)
Post-op dysphasia (swallowing problems including food getting stuck at the wrap site)
Hiatus hernia (the esophagus and the stomach slide up above the diaphragm and into the chest cavity)

Not all children who have a fundoplication will have these complications but many children have at least one of them. In most cases they will improve with time. If your child is facing a fundoplication read about what you can expect before and after surgery.

New research indicates that most children will still experience reflux symptoms or require medical treatment after having a fundo. According to a report in the November 2004 issue of Clinical Gastroenterology and Hepatology about two thirds of the patients in the study were seen within two months after their surgery with symptoms of reflux or received treatment for reflux.

HEART MOMS: What do you suggest for me to do now. My heart doc says to wait a few months. That is our plan for now, but in a few months if we still need a feeding tube, what do you advise us to do? Have any of your babies had this along with the PEG tube?

HEART MOMS: One more question for my heart mom friends, I have watched many of your cool videos. I know how to make a video on movie maker. How do I put that on my cp or blog? Or, what other way could I make a video to post? Remember I am not a computer whiz. You may have to walk me through step by step. Poor Ani Karg gets too many of my questions. By the way Ani, please make my blog three columns. I want to put other people's buttons on my page.

GOD IS IN CONTROL:
When we worship the Lord, let’s remember that He is in control. Nothing alarms Him, or takes Him by surprise. Nothing is too big for Him to handle, or so small it escapes His attention. When the winds of my world begin to blow, He remains seated. When raging waves surround me, He governs their temper…I need not be moved … Because the Lord is seated and sovereign…He alone is sovereign.

- Ronald James

Many times, we feel like we are in control, but God reminds us that He is in charge.

In the Old Testament book of Job, Chapter 38, God answers Job in short, to the point sentences. I particularly like verse 4 "Where wast thou when I laid the foundations of the earth? declare, if thou hast understanding."

I believe in this Chapter, God reminds Job (and us), that though we don't understand sometimes, we can trust the One who made everything.

I need to reread this once in awhile.

CELEBRATION OF MACKYNLEE'S FIRST YEAR OF LIFE:
We are steadly working on plans to celebrate our miracle's first year. The date is still tentative. I will let everyone know the details as they come together. We are very excited about this. Thanks so much to my friends Kathryn Lowery and Susan Reagan. They are both so on the ball about this event. We are asking that everyone wear red to promote CHD awareness. How cool is that? That is Kathryn's brain working overtime!!! I love my party planner friends.

ANY OTHER IDEAS FOR THIS CELELBRATION WILL BE APPRECIATED!!!

Birthday Party Ideas?

2010-01-11T06:58:00.001-08:00

Mackynlee is doing great. I still have not heard from the doctors concerning the peg tube. We have increased Mackynlee's formula intake from 4 ounces every 3 hours to 6 ounces every 3 hours. She is not throwing up and seems to be much more satisfied. We were having to hold her all of the time. Talk about wear you out!!

Mark's Uncle Charles is still in the hospital. Doctors will be running test today to figure out what exactly is going on with him.

Okay, the real reason for this post: HEART MOMS I need ideas. We are cosidering having Mackynlee a first birthday party on Valentine's weekend. I am planning to do a heart theme of coarse. I would like to somehow pull in chd awareness. Any ideas? The only thing that is coming to my mind is having children bring riding toys and having signs already made with defect facts to hang on their riding toys. Maybe a parade to promote awareness?

Lots of Prayer Requests

2010-01-09T12:11:00.000-08:00

Mackynlee's appointment Wednesday with heart doc went great. Her heart is doing fine. She got taken off of one of her meds!! YAY Still not sure about peg tube surgery. Heart doc and GI doc are deciding for us. We should hear something soon.

Seems like everytime I get a phone call, check face book, or get a text, it is bad news. Please pray for the following who is in need.

Our Uncle Charles Montgomery was flown from Wesley Medical Center to Tulane yesterday. His liver is not functioning properly. There is concern about his kidneys shutting down. This is Mark's mother's sister's husband. He lives in Sumrall. His amonia level has gone from 300+ to now around 50. This is a good thing. His son told me this was a good level for him. Doctors are running test to find out more info. Uncle Charles has a shunt in his brain from previous surgeries.

Misty McNabb's neice(less than 2 years old) is in Tulane. I copied the following from Misty's fb page:

Our sweet Avery has been diagnosed with A.L.L. T-Cell Leukiemia. We are heartbroken. The docs are very positive and say 85 to 90 percent Avery can be cured! The 1st month is the hardest for Avery - she began last night with her "induction chemotherapy". Please pray for Avery each and everyday and also strength for Ashl...ey and Aj to get through each day as they learn how to take care of her.

This family has been through so much already with the "sick children" world. Misty's son Myles has been sick since he was born and has had surgeries himself.

Mary Nell Livingston's brother Forrest Danton had a brain anurism. He is in critical condition. Pray for him and this family. Mary Nell is a teacher at WMP. I have just recieved an email stating that he has passed. Please pray for this family.

Wishing Angel Ethin a Happy 1st Birthday. He was born January 9, 2009. He met Jesus on June 27, 2009. His life was cut short due to congenitial heart disease. Please lift his family up in your prayers today.

I am asking all of you to go to the following website: http://www.ipetitions.com/petition/chdfight/. Please sign this petition. It is "Fight For Newborns Who Can't Speak For Themselves". This is free. You do not have to donate. After clicking Sign, you do not have to do anything else. Your signiture is ...valuable and makes a real difference. Think about my Mackynlee. The doctor's first option for us was to abort.

One of my high school teachers sent me the following email this morning. I wanted to share it with all of you.

BURNED BISCUITS

When I was a kid, my mom liked to make breakfast food for dinner every now and then.

I remember one night in particular when she had made breakfast after a long, hard day at work.

On that evening so long ago, my mom placed a plate of eggs, sausage, and extremely burned biscuits in front of my dad.

I remember waiting to see if anyone noticed, yet all my dad did was reach for his biscuit, smile at my mom and ask me how my day was at school.

I don't remember what I told him that night, but I do remember watching him smear butter and jelly on that biscuit and eat every bite.

When I got up from the table that evening, I remember hearing my mom apologize to my dad for burning the biscuits, and I'll never forget what he said.

He smiled at her and said, "Honey, I love burned biscuits."

Later that night, I went to kiss my dad good night and I asked him if he really liked his biscuits burned.

He wrapped me in his arms and said, "Your mom put in a hard day at work today and she's real tired. And besides, a little burnt biscuit never hurt anyone."

Life is full of imperfect things and imperfect people. I'm not the best at hardly anything, and I forget birthdays and anniversaries just like everyone else, but what I've learned over the years is that learning to accept each others faults, and choosing to celebrate each others differences, is one of the most important keys to creating a healthy, growing, and lasting relationship.

And that's my prayer for you today. That you will learn to take the good, the bad, and the ugly parts of your life and lay them at the feet of God, because in the end, He's the only one who will be able to give you a relationship where a burnt biscuit isn't a deal-breaker.

We could extend this to any relationship. In fact, understanding is the base of any relationship, be it a husband-wife or parent-child or friendship.

Don't put the key to your happiness in someone else's pocket, keep it in your own.

God bless you today and always.

So, pass me a biscuit, and yes, the burnt one will do just fine.

And pass this along to someone who has enriched your life . . . I just did.

Tube is Back in!!! YUCK

2009-12-30T08:35:00.000-08:00

Okay, I have not wanted to post this, but here goes. Mackynlee lost 6 ounces with her tube taken out in a week. This is way too much for her to lose. Actually, any ounce is too much for her to lose. She needs to gain weight!! At least we know from giving her a break from the tube that she is not going to eat enough without it. We were just wanting to give it a try. For our peace of mind, we know she still has to have the tube. She needs to eat about 27 ounces a day. She was eating around 20 ounces a day on her on without the tube. Getting these 20 ounces down her each day was a struggle. We were nonstop feeding her. She was also very restless because she was never getting full. She snacked continuously.

We put the feeding tube back in yesterday. She is gagging and throwing up again. It is pure torture for all of us. It is so hard seeing your baby do this after every feeding!!! We may go ahead with the surgery to get the peg tube, or we may wait a while. There are many reasons to go ahead and get the tube, but I also have lots of hesitations about getting peg tube.

Reasons to get it:
She does not do well with the feeding tube in her throat.

Reasons not to go ahead with it:
I do not want her exposed to sickness in the hospital.
I do not want her to have any setbacks from having another surgery or just by being in the hospital.
I still have hopes that in a month or so her eating will pick up again.

I know there are many more reasons, but my brain is not working this morning. Pray I deal with this better. I know things could be a lot worse for us, but this is draining me. I am so tired of people offering suggestions of what I should do to get her to eat. We do not know why she is not eating. It has nothing to do with the taste of food or any other common reasons normal babies do not eat. People do not understand you cannot compare a heart baby in any way to a normal baby!!! Sorry for being so negative, I am just going through one of my feel sorry for myself and my baby days. I actually dodged people yesterday in Walmart because I did not want to be questioned or hear any suggestions!!!!!

I am going to share a post from another heart mom about the feeding tube issues. This is so similar to our feelings!!!

We did a trial for Veiyah's feeding tube to come out. She needs a total of 700 ml's a day for her calorie intake goals to be met. Just to be hydrated she needed at least 500. She got to about 550 a day. She did SO good. At first she went up 1.5 oz. Then 4 days later, she lost 4oz. So they said by the next visit (2 days) she HAD to be up the 4oz in weight gain for the tube to stay out. That visit came and she only gained 1 oz back. It was hard to have to put this tube back in, but I'm remembering how trivial this is compared to not having her with us. It is a pain, I won't lie. She is constantly pulling it out. We keep her arms wrapped, and an 8 month old baby girl shouldn't live like that. ;) So, we are looking at getting Veiyah scheduled to get a G-tube. I've wavered over this decision for months and Jer and I really do feel a peace about it now. Now it's just a waiting game. We wait on GI surgeons to get back with us on when! As for now, our consultation is this Friday. She also has her neurology appointment Friday as well. Please pray for both appts to go well.

It was SO much fun having that tube out of V's nose for a week and a half! She was a different baby!! She held her head up SO much better, no wobbling. She laughed more, smiled more, and we could hear her real voice rather than a muffled one from a tube swelling her throat. Wow, that girl has a voice! :)

Merry Christmas

2009-12-24T09:27:00.000-08:00

Mackynlee did great the first 24 hours having her tube out. She ate 21 ounces of formula, a half jar of baby food, two teaspoons of dumplin juice, peanut butter fudge, and 5 or 6 french fries. Today she is not eating so well. She is very fussy and very hungry, but just will not take much. Keep praying. I am not giving up just yet. She has only take about 10 ounces since 9 p.m. She has not wanted to eat any food this morning. She just holds it in her hand and throws it down. She is holding her own bottle!! Seems like she eats better when I let her hold it.

My friend Kolbi and baby Kade are home. His ultrasound was fine. Doctors want to do a follow up ultrasound in two months just to make sure all is okay. Thanks for special prayers for this family.

Hammer and Tonya: Thanks so much for the package of goodies. When I opened the box, I knew who it was from before opening the card. That is so sweet of yall. We will save the crab boil for when yall come for another visit. I hope it will be soon. The banana nut bread and peanut butter fudge is fine. Mackynlee loves the fudge!!! Merry Christmas.

I want to wish a very good friend of mine (my boss) Sherrie Williams a happy birthday. The holidays are not always a wonderful time of year for everyone. She lost her son in 2003 on Christmas Eve which is also her birthday. Two years later her husband passed away during the holidays. This is a difficult time of year for her. She has also lost several more family members in the past few years. I love you and wish I could make everything better. This poem is for you.

MAY YOU HAVE PEACE

I cannot say that I know, just how you feel
For your hurt is so great, and will take God's touch to heal

Yet is it possible for such a wound, to completely ever mend
When you've lost your mate, parent, child or good friend

Please know that I pray for you, each and every day
And feel God's Holy Spirit, in small and simple ways

And then I am reminded, of such a simple phrase
With all the strength that's in you, please walk by faith

So come to me and talk about, anything you feel
For I'll be here in body, but Christ will soon reveal

That while it is impossible, for a friend to end your pain
HE will bring about a peace, and in your hurt sustain

----------------------------------------

When all five of us were eating breakfast this morning, my thoughts were with everyone that is in the hospital during this time of year. The hospital is a difficult place to be. I cannot imagine being there during the holidays. When I checked my messages this morning, a friend of ours, Kristen Colman had left a message that she was praying for us. Thank you Kristen for your prayers for us. Tell Breanna that Shelby says Merry Christmas and she wants to go back the the PRMH to play with her again. Her angel (Angelina) is still in the hospital. Their caring bridge is AngelinaColman. I encourage you to read their amazing story. They are still in the hospital. Kristen, both girls are just a beautiful as ever!!! Our thoughts and prayers are with your family. You are so strong. I do not know how you keep such a smile on your face. I ask that all of my readers pray specifically for the children and their caregivers that are in the hospital during the holidays and thank God as you are praying for the things in life you take for granted. Healthy children, homeade candy, walking to your kitchen for a cup of coffee, etc.

-------------------------------------------------------------------------

Christmas Eve: I hope all of you get a visit from Santa tonight!!

It was Christmas Eve and the frost fairies were busy getting ready for Christmas Day. First of all they spread the loveliest white snow carpet over the rough, bare ground; then they hung the bushes and trees with icicles that flashed like diamonds in the moonlight. Later on, they planned to draw beautiful frost pictures on the window panes, to surprise the little children in the morning.

The stars shone brightly and the moon sent floods of light in every nook and corner. How could any one think of sleeping when there was such a glory outside!

Jessie and Fred had gone to bed very early so they might be the first to shout "Merry Christmas!" but their eyes would not stay shut.

"Oh dear! It must be 'most morning," said Fred; "let us creep softly down stairs and maybe we'll catch Santa Claus before he rides off."

Hand in hand they tiptoed to the dining-room and peeped out the big window - surely, surely, that was something climbing up the roof of cousin Nellie's house; it must be old Santa. Fred gave a chuckle of delight; to be sure the reindeer were very queer looking objects, and the sleigh such a funny shape, but the children were satisfied.

The old fir tree, whose high branches almost touched the roof, knew all about those shadows, but it was so old no one could ever understand a word of the many tales it told.

"There's something scratching on the door," whispered Jessie; but it was only a mouse, who had sniffed the delightful odors of the Christmas goodies and was trying his best to find a way into the pantry and test them with his sharp teeth.

"Come," said Jessie, "we'll turn to icicles if we stay here much, longer"; so up-stairs they quickly scampered.

Papa had been to town on an errand, so it was quite late when he came home. As he was hunting in his pockets for his key, he heard a pitiful cry, and looking down he saw a big, white cat carrying a tiny kitten in her mouth.

"Poor thing," said papa, "you shall come inside till morning."

Santa Claus had been there with the nicest wagon for Fred and a warm, seal-skin cap that lay right in the middle of it. When papa left the room, puss and her kitty were curled up comfortably on the rug singing their sleepy song.

The sun was shining brightly in the dining-room window when Jessie and Fred made their appearance; then Fred just laughed with delight, for right in the crown of his new cap lay the cutest white kitten, with big, blue eyes and wee pink nose, while standing close by as if to guard her darling from danger, was good old mother puss.

"I never had a live Christmas present before," said Fred, "now I know Santa Claus read the letter I threw up the chimney because I told him to bring me a kitten and here it is."

Papa smiled and looked at mamma, and then everybody said "Merry Christmas" at once.

Waiting on G-Tube Appointmnet

2009-12-07T06:34:00.000-08:00

I do not have any medical updates, but I just wanted to know all is going fine. I will update when we know a date for the G-Tube placement. Please pray that Mackynlee will miraculously begin eating 27+ ounces through her bottle each day. Yesterday she ate 8 ounces by mouth. I know 19 ounces more is a long way to go, but through prayer all things are possible.

I had a great birthday. Thanks to Tracy for buying me a planter that says "It is not waiting for the storm to pass. It is learning how to dance in the rain." I needed reminding of that saying. Shelby had me a surprise bday party right after school. It was the five of us, Meemaw, Granny, and Nina. It was the best bday I have had in a long time. I think it was the seeing the excitement in Shelby and Connor's eyes. I know I am truely loved.

I also posted a few pictures from Connor's bday party in the gallory. I think there's also a deer hunting picture.

It snowed here this past weekend. I added some pictures of Mackynlee in a Christmas dress that was Shelby's. She loved the snow.

We have gotten Mackynlee out of the house quite a few times lately. I hope we are not getting too brave, but I just wanted her to be apart of getting our Christmas tree, my birthday dinner, and I took her to two birthday parties. Oh, yeah, we took her to church too.

The first birthday party was for Olivia Torian. She was born two years ago with trisomy ?13?. It is a trisomy that is incompatible with life. She is a local miracle as she has proved medical theory wrong. Her mother and I have been friends since grade school. It was so sweet having two local miracles together.

The second bday party was for Connor's girlfriend haha. Our families are all close. Tracy and I are friends. Chad and Mark are friends. Our big girls are friends, and Madelyn and Connor are friends. I just did not want to leave Mackynlee out.

I enjoyed so much taking her to church. No one touched her and the people that came by to look were very respectful. It felt so good having her in the same place with so many of the people that prays for her daily.

I am going to leave you with a story. I encourage all to read it. This was inspired by Shelby. Last night after church, her teacher had taught her the colors of Christmas. Thank you Tammy Herrington for taking the time to teach my baby about Jesus.

Teach the children...
Late one Christmas Eve, I sank back, tired but content, into my easy chair. The kids were in bed, the gifts were wrapped, the milk and cookies waited by the fireplace for Santa. As I sat back admiring the tree with its decorations, I couldn't help feeling that something important was missing. It wasn't long before the tiny twinkling tree lights lulled me to sleep.

I don't know how long I slept, but all of a sudden I knew that I wasn't alone. I opened my eyes, and you can imagine my surprise when I saw Santa Claus himself standing next to my Christmas tree. He was dressed all in fur from his head to his foot just as the poem described him, but he was not the "jolly old elf" of Christmas legend. The man who stood before me looked sad and disappointed, and there were tears in his eyes.

"Santa, what's wrong?" I asked, "Why are you crying?"

"It's the children," Santa replied sadly.

"But Santa, the children love you," I said.

"Oh, I know they love me, and they love the gifts I bring them," Santa said, "but the children of today seem to have somehow missed out on the true spirit of Christmas. It's not their fault. It's just that the adults, many of them not having been taught themselves, have forgotten to teach the children."

"Teach them what?" I asked.

Santa's kind old face became soft, more gentle. His eyes began to shine with something more than tears. He spoke softly. "Teach the children the true meaning of Christmas. Teach them that the part of Christmas we can see, hear, and touch is much more than meets the eye. Teach them the symbolism behind the customs and traditions of Christmas which we now observe. Teach them what it is they truly represent."

Santa reached into his bag and pulled out a tiny Christmas tree and set it on my mantle. "Teach them about the Christmas tree. Green is the second color of Christmas. The stately evergreen, with its unchanging color, represents the hope of eternal life in Jesus. Its needles point heavenward as a reminder that mankind's thoughts should turn heavenward as well."

Santa reached into his bag again and pulled out a shiny star and placed it at the top of the small tree. "The star was the heavenly sign of promise. God promised a Savior for the world and the star was the sign of the fulfillment of that promise on the night that Jesus Christ was born. Teach the children that God always fulfills His promises, and that wise men still seek Him."

"Red," said Santa, "is the first color of Christmas." "He pulled forth a red ornament for the tiny tree. Red is deep, intense, vivid. It is the color of the life-giving blood that flows through our veins. It is the symbol of God's greatest gift. Teach the children that Christ gave his life and shed his blood for them that they might have eternal life. When they see the color red, it should remind them of that most wonderful gift."

Santa found a silver bell in his pack and placed it on the tree. "Just as lost sheep are guided to safety by the sound of the bell, it continues to ring today for all to be guided to the fold. Teach the children to follow the true Shepherd, who gave His life for the sheep."

Santa placed a candle on the mantle and lit it. The soft glow from its one tiny flame brightened the room. "The glow of the candle represents how people can show their thanks for the gift of God's son that Christmas Eve long ago. Teach the children to follow in Christ's foot steps...to go about doing good. Teach them to let their light so shine before people that all may see it and glorify God. This is what is symbolized when the twinkle lights shine on the tree like hundreds of bright, shining candles, each of them representing one of God's precious children, their light shining for all to see."

Again Santa reached into his bag and this time he brought forth a tiny red and white striped cane. As he hung it on the tree he spoke softly. "The candy cane is a stick of hard white candy. White to symbolize the virgin birth and sinless nature of Jesus, and hard to symbolize the Solid Rock the foundation of the church, and the firmness of God's promises. The candy cane is in the form of a "J" to represent the precious name of Jesus, who came to earth. It also represents the Good Shepherd's crook, which He uses to reach down into the ditches of the world to lift out the fallen lambs who, like all sheep, have gone astray. The original candy cane had three small red stripes, which are the stripes of the scourging Jesus received by which we are healed, and a large red stripe that represents the shed blood of Jesus, so that we can have the promise of eternal life.

"Teach these things to the children."

Santa brought out a beautiful wreath made of fresh, fragrant greenery tied with a bright red bow. "The bow reminds us of the bond of perfection, which is love. The wreath embodies all the good things about Christmas for those with eyes to see and hearts to understand. It contains the colors of red and green and the heaven-turned needles of the evergreen. The bow tells the story of good will towards all and its color reminds us of Christ's sacrifice. Even its very shape is symbolic, representing eternity and the eternal nature of Christ's love. It is a circle, without beginning and without end. These are the things you must teach the children."

I asked, "But where does that leave you, Santa?"

The tears gone now from his eyes, a smile broke over Santa's face. "Why bless you, my dear," he laughed, "I'm only a symbol myself. I represent the spirit of family fun and the joy of giving and receiving. If the children are taught these other things, there is no danger that I'll ever be forgotten."

"I think I'm beginning to understand."

"That's why I came," said Santa. "You're an adult. If you don't teach the children these things, then who will?"

(Author Unknown)

Doc Appointment Cancelled

2009-12-01T06:15:00.001-08:00

Mackynlee had an appointment today to have a 24 hour PH probe test with the GI specialist. Yesterday evening, the nurse called and has postponed the appointment until further notice. I have mixed feelings about this. In one way I was happy to not have to do this today, in another way I just wanted to get this over with. She will have her feeding tube in one nostril and another tube in her other nostril for 24 hours. I know this is going to be annoying for her. The feeding tube has not been stressful lately. She has been keeping it in, and has been keeping down most of her feedings. She will eat from the bottle an ounce or two at a time. We feed her at least 770ml's a day, so we subtract what she takes by mouth and give her the rest through her tube. The home health nurse did not come yesterday, but we all feel sure she is gaining weight.

She is active as ever!! I think she is going to walk before she crawls. She is moving around everywhere, but it is more rolling than crawling. Her personality is blossoming. The other night I was handing her over to Mark(she usually goes right to him) she grabbed onto me tightly, turned her head away from him, and said,"hhhhmmmmpppph!" Too funny. Needless to say, I did not give her to him.

We had a wonderful Thanksgiving, and Connor's pirate party turned out to be the best party ever. Mark got off of the hook, he did not have to wear the pirate costume, Tany Powell offered to wear it. I will post some pics from the party later today when I get home. The birthday cakes were spectacular. My mother-in-law bakes wedding cakes, birthday cakes, etc. She always does a wonderful job on ours. She made a pirate with a bird on his shoulder and a treasure chest. We enjoyed visiting our friends and watching our children play together.

As we enjoy the holiday season, remember the words of this poem.

The Real Reason

Excitement and joy are filling the air;
The lights add special decor.
We're shopping for Christmas gifts everywhere,
But are gifts what Christmas is for?

The wreaths and the trees and the parties
Aren't what we need to convey;
It's the birth of our Savior, Jesus,
The real reason for this holiday.

By Karl and Joanna Fuchs

I will continue to update all of you on our appointment and let you know when the date is scheduled to get her g-tube

An Update For Hammer

2009-11-21T17:13:00.000-08:00

Hammer, this update is especially for you!!

Hammer(Eric) is a good friend of ours. He works offshore with Mark. They have both been offshore this week. So he knows exactly what is going on here at home. Mark tells him everything. He knows much more than I put on this web page. He knows everything about what is going on with the baby plus when I am in a bad mood, when I chew Mark out, ect. But, he tells Mark to tell me he needs an update. So, here it is.

The baby had an appointment with Dr. Bishop yesterday. We will have an upper barrum swallow Tuesday and another test on Dec 1st. Then the date will be set to put in the g-tube. This will be a 3 to 5 night hospital stay. Finding out that has greatly upset me. We are also changing the way we feed Mackynlee. We will now feed her around the clock every 3 hours. We will increase the amount we give her. This should stretch her tummy. The more it stretches, the more we can feed her and the less times we will have to feed her. (I hope that makes sense.)

As for me, I am exhausted. Everything has caught up with me once again. I hate being on such a tight schedule with the baby. There is always something to do for her. Now feeding her bolus feeds only, the schedule will be tighter and tougher. Life is just very difficult right now. I feel like a prisoner to our house. I come home as quickly as I can after work each evening. If there is anything I need to do, I have to get people to sit with Mackynlee and I am always in such a rush to get back to her before her next feed or meds. I have told Mark when he gets home he is going to be the winner of getting to walk in my shoes for a few days. I have got to be freed from a little stress. I need to sleep late, take a nap, or just whatever I want at the time I want. I know this sounds selfish, but I just need a break from my everyday stressful routine.

Stacy Dixon Creaole, a classmate of ours, lost her father this week. I ask that all keep this family in your prayers.

Father of all mercies and God of consolation, You love us eternally and transform the shadows of death into the dawn of life. Look upon our grief; be our refuge and comfort so that our sadness and sorrow may turn into the light and peace of Your Presence. In dying, Your Son destroyed death; in rising, He restored life. Grant that at the end of our earthly pilgrimage we may be found in His company with our brothers and sisters. There, You shall wipe away every tear. We ask this through Christ our Lord. Amen.

2009-11-07T10:30:00.001-08:00

Well, I know I have not been posting as faithful as I was. Sorry. Ms. Susan Slocum told me this morning how important it was for me to continue letting all know what is going on. I am just very busy, but I am going to set aside time to post at least once or twice a week even if there is no medical news. It is good therapy for me to post and makes me spend more time on devotions, bible reading, and prayer.

Medical Update:
Mackynlee went to the peditrician on Wednesday. He was shocked that she had a feeding tube. She got her 2nd flue shot and rsv shot. We discussed many issues. One thing that he told me is that we were "screwed." Anyone who lives in a rural area that has a child with a complicated medical problem is "screwed." He says due to hospital and ER policy, the local hospitals would not see Mackynlee even for minor issues such as doing an x-ray to make sure her feeding tube is placed correctly. He continued to say this really is a good thing, because if there were other finding to do with her brain or heart, we would be STUCK at a hospital that is incapable of treating such problems. So, if we ever feel she needs to be seen by a doc, he suggests we get in our car and start our 2 hour drive to UMC in Jackson. She is gaining weight now. We have a homehealth nurse that comes and weighs her on Mondays. Last Monday she weighed 13.7!!! The nurse has also ordered a SATS monitor to check Mackynlee's sats on Mondays. She is also checking into getting us PT and OT. Mackynlee is a little behind in her development and our docs want us to get on top of this physical delay. Pray all works out for us to get these services often!!

Shelby is sick with a stomach virus. She has been at my mother-in-laws since Thursday. This is difficult on us. She misses being home and being with us, but we know this is not as difficult as if Mackynlee caught the virus and had to be hospitalized again.

Connor is his silly self!! Mark was just reading a book to him about telling time. He showed Connor how to turn the hands of the clock to 8:30. Connor said, "Daddy, that's not a 30, that's a 6!" He said it in the tone of my daddy does not even know his numbers. HAHA I am planning a pirate birthday party for Connor on November 28th from 1-3. All are invited. If any of you have a cheap idea to make a pirate party cute, let me know. I'm having a treasure hunt, a tattoo table, a pin the flag on the map game, and a pirate dress up and taking each child's pic with a polaroid camera. I'm making picture frames out of construction paper. I am so glad to get excited about this party. For a long time when I thought about his birthday, I would get upset because I did not have the energy or excitement to throw him a party. I want to throw him nice parties because I have always done that for Shelby. I was feeling like I wasn't being a good mom to him, but when Mackynlee started gaining weight, I immediately got the strength and excitement to have him an awsome party!!!

Thanks to Ms. Betty Pittman, my mom, my mother-in-law,and many from our church that provided dinner for us each night this week. I'm not going to name everyone that took part from the young adults from our church because I'm not sure I even know who all sent stuff and help pay for stuff, but I have to mention Ms. Susan Slocum. She made candied apples and a delicious italian cream cheese cake!!! Also, Shelby's GA class from church gave us a bag of fruit. I just peeled an apple for Connor. It was perfect timing and made this first week back at work much more pleasant knowing I did not have to deal with cooking or figuring out dinner plans each night. Special thanks to Tracy and Tanya for giving us a sweet card with money. We are financially okay still, but extended hospital stays can and will put a strain on your finances. Mark and I have always chosen not to use credit cards. If we do not have the money, we do not get what we want. This Christmas will be the same way. Presents are not worth making bills over. We will just down size a bit this year and that is perfectly fine with all of us. Our children do not need anything (along with the majority of children in this day and time). We do not need for anything either. This year during the holidays we will more than ever see the miracles from GOD as our Christmas gifts. "Take time to notice the miracles you are asking for that just might be happening all around you. You might be surprised at what a "miracle" really is! Then remember to give God the glory for it, for it came from no other~ I stole this from another heart mom Ani Karg. Her carepage is thekargfamily. She is an awsome writer and can share her feelings so much more clearly than I. A miracle to me is a normal, tired Monday. Or a Saturday of having to clean the house after a crazy work week. Or trying to get Shelby to learn her spelling words. Life is a miracle. The things we complain about are miracles.

Physically I am feeling great. I have finally caught up on much needed rest that I didn't get when we were in the hospitals. Emotionally I am doing better, but I still have my moments. Thursday when Shelby started getting sick, Mackynlee pulled out her feeding tube, again! I said "God, just speak to me in an audible voice and I will do whatever you are trying to tell me to do. Please stop trying to tell me things through the health and discomfort of my children." But, I soon got over my "feeling sorry for myself and my kids spell." There's just no time for feeling sorry for myself. The most difficult thing for me right now is going places where other moms have their babies that are around Mackynlee's age. I know this is so wrong of me to get upset about this. I know God could have chosen to take my baby. I have to be thankful instead of upset. I also know there are many women out there that cannot have babies and this probably sounds so silly that I would be upset about not carrying Mackynlee out. I have two other kids to do things with, etc. I just want her with us so much, but it is in her best interest for her to stay home. We have decided to keep her home all winter. Sorry in advance for any birthday parties we might miss if we do not have a babysitter for Mackynlee. When Mark is home, we are tag teaming well. Ms. Diane, my mom, and meemaw have all been great at helping out when I need to carry Shelby to gymnastics or she and Connor to church. So many ask what can they do to help. I always say just pray. But, I realized this morning (Mark is leaving for two weeks tomorrow) I could use some help with Mackynlee on Sunday evenings 5:00-6:30 (kids love chior and I love teaching my discipleship training class) on Mondays from 5:30-6:30(Shelby takes gymnastics) and on Wednesdays from 6:30-7:30(kids love going to mission friends and GA's at church). If any of you would like to come hold our miracle during any of these times, please let me know. I will arrange her feeds and meds where all you would have to do is play with her, hold her, and possibly change her diaper. This would be a great help to me emotionally. I do not want Shelby and Connor to have to miss out on the things their are involved in. It will make me feel like I am giving all three of my children everything they need. Once again, our grandma's are helping out wonderfully, but I hate for them to have to miss church all of the time and I do not want to burn them out. I also just thought some of you might want to spend some special time with the miracle all of you have prayed for and conitnue praying for. Food is always welcome here, too. HAHA! Having supper provieded each night this week really spoiled me!!

I also want to thank everyone I work with. So many of my co-workers donated days to me once again. My paycheck has only been docked for $700.00 one time and I have 16 more days to use during this school year when I need to take baby to doc, etc. Several more teachers/friends have told me over and over to let them know if I need more days. This is such peace to know that I have this time to use when needed and my check will not continue to be docked. I worked with wonderful, caring, kind, christian people. Thanks to all of you for supporting me and my family.

Heart Moms: Mackynlee seems to be having a lot of discomfort with gas pains. Do you think it could be any of her meds? What should I do? Call the doc? Malicon drops? It seems to be worse in the wee hours of the morning than any other time of the day.

PLEASE HELP - NEED SOME CARDS! Diana Harrison Biorkman has a 5-yr old son in his last stages of a 2 1/2 year battle with Neuroblastoma cancer. They are celebrating Christmas next weekend and Noah loves Christmas cards. Please take a minute to send a card....PLEASE do it right away!!!!! To : Noah Biorkman, 1141 Fountain View Circle, South Lyon MI 48178. This came from a heart mom's facebook page.

Well, I guess I had more to say than I realized when beginning this post. I hope I haven't bored you. Thanks to all of you for continuing to pray for us. Lift up Meemaw(Ms. Sharon) in your prayers daily. God sent her to us and visa versa. She is such a blessing to our family. Pray for her stregth as she has such a tight schedule to keep Mackynlee on daily while she also sees to the needs of our 3 year old. She is also babysitting Mackynlee tonight so Mark, Connor, and I can go to a young adult party at Tracy and Chad's. She comes every time Mackynlee pulls out her feeding tube and would not have it any other way. We love her so much!! Pray Mackynlee keeps the tube in this time. We have it taped better. We used paper tape instead of that clear stuff!! One last prayer request. I am not giving Mackynlee feeding tube feeds during the day for a few days. This is my decision, not the doctors. Please pray that she will start eating better. I just want her to eat so badly. We except the feeding tube and thank God for it, but we do not want her to stop eating completely. We want her to have the enjoyment of eating (this bothers Meemaw very much).

A Little Girl's Prayer
Author: Helen Roseveare, a doctor missionary from England to Zaire, Africa
Translator: Maria
One night I had worked hard to help a mother in the labor ward; but inspite of all we could do she died leaving us with a tiny premature baby and a crying two-year-old daughter. We would have difficulty keeping the baby alive, as we had no incubator (we had no electricity to run an incubator) and no special feeding facilities.

Although we lived on the equator, nights were often chilly witht reacherous drafts. One student midwife went for the box we had for such babies and the cotton wool the baby would be wrapped in. Another went to stoke up the fire and fill a hot water bottle. She came back shortly in distress to tell me that in filling the bottle, it had burst. Rubber perishes easily in tropical climates.

"And it is our last hot water bottle!" she exclaimed.

As in the West it is no good crying over spilled milk, so in Central Africa it might be considered no good crying over burst water bottles. They do not grow on trees, and there are no drugstores down forest pathways.

"All right," I said, "Put the baby as near the fire as you safely can; sleep between the baby and the door to keep it free from drafts. Your job is to keep the baby warm."

The following noon, as I did most days, I went to have prayers with any of the orphanage children who chose to gather with me. I gave the youngsters various suggestions of things to pray about and told them about the tiny baby. I explained our problem about keeping the baby warm enough, mentioning the hot water bottle. The baby could so easily die if it got chills. I also told them of the two-year-old sister, crying because her mother had died.

During the prayer time, one ten-year-old girl, Ruth, prayed with the usual blunt conciseness of our African children. "Please, God," she prayed,"send us a water bottle. It'll be no good tomorrow, God, as the baby'll be dead, so please send it this afternoon." While I gasped inwardly at the audacity of the prayer, she added by way of corollary, "And while You are about it, would You please send a dolly for the little girl so she'll know You really love her?"

As often with children's prayers, I was put on the spot. Could I honestly say, "Amen"? I just did not believe that God could do this. Oh, yes, I know that He can do everything. The Bible says so. But there are limits, aren't there? The only way God could answer this particular prayer would be by sending me a parcel from the homeland. I had been in Africa for almost four years at that time, and I had never, ever received a parcel from home. Anyway, if anyone did send me a parcel, who would put in a hotwater bottle? I lived on the equator!

Halfway through the afternoon, while I was teaching in the nurses' training school, a message was sent that there was a car at my front door. By the time I reached home, the car had gone, but there, on the verandah, was a large twenty-two pound parcel! I felt tears pricking my eyes. I could not open the parcel alone, so I sent for the orphanage children.Together we pulled off the string, carefully undoing each knot. We folded the paper, taking care not to tear it unduly. Excitement was mounting. Some thirty or forty pairs of eyes were focused on the large cardboard box.

From the top, I lifted out brightly colored, knitted jerseys. Eyes sparkled as I gave them out. Then there were the knitted bandages for the leprosy patients, and the children looked a little bored. Then came a box of mixed raisins and sultanas - that would make a nice batch of buns for the weekend. Then, as I put my hand in again, I felt the... could itreally be? I grasped it and pulled it out - yes! A brand-new, rubberhot water bottle! I cried. I had not asked God to send it; I had not truly believed that He could.

Ruth was in the front row of the children. She rushed forward, crying out, "If God has sent the bottle, He must have sent the dolly, too!"

Rummaging down to the bottom of the box, she pulled out the small, beautifully dressed dolly. Her eyes shone! She had never doubted!

Looking up at me, she asked, "Can I go over with you, Mummy, and give this dolly to that little girl, so she'll know that Jesus really loves her?"

That parcel had been on the way for five whole months! Packed up by my former Sunday school class, whose leader had heard and obeyed God's prompting to send a hot water bottle, even to the equator. And one of the girls had put in a dolly for an African child - five months before - in answer to the believing prayer of a ten-year-old to bring it "that afternoon."

"Before they call, I will answer!"
Isaiah 65:24

Doc Appointments Tomorrow

2009-10-27T06:51:00.001-07:00

Just wanted to post a quick update. All is going smoothly with feeding tube and giving her meds through the tube(we love that part of the tube). I have a few concerns. Mackynlee is very restless especially during the night. I feel like this is a side effect of the combo of meds that she is taking. I am also concerned because her eating with the bottle is decreasing instead of increasing. She has been taking in aroung 200mls of formula with her bottle. Yesterday she only took in 130ml's. This really bothers me. Dr. Shores(heart doc) will see if the pleural effusion has gotten any smaller. I pray it is completely gone away and we can begin taking Mackynlee off of some of her meds (she is on four diuretics). Dr. Bruce (neurologist) and I will discuss seizure meds. Mackynlee has only had a very few and very mild seizures since being discharged from the hospital four days ago. I also hope we can reduce some of the seizure meds.

I will post an update on what news we get from the doctors as soon as I can. I am enjoying being home with my family, but it is crazy busy around here!!! This is the first time I have been on my computer since I have been home. There is no time to goof off with three kids needing you!!!

I want to ask all of my readers to pray specifically this week for my friend, Rhonda Pittman. She will begin her fight against breast cancer tomorrow.

Lord, thank you for your loving kindness and tender mercies towards your children. Thank you for being a God who wants His people to be whole. Lord, I ask that you intervene and help Rhonda and her family as they begin the battle against cancer. I am confident that you will deliver her because you not only hear but
answer prayers. Thank you for the answer in Jesus Precious Name. Amen and Amen.

A Curvy Road

2009-10-21T14:53:00.000-07:00

Mackynlee is taking us down a curvy road right now. We do not know how long it will be before she decides to head down a straight road to recovery or how long she will continue to be on the curvy road. Her seizure activity still seems to be under control. The two concerns now are her heart (plueral effusion) and feeding issues. Today she went for an echo. This showed no sign of a pericardial effusion. This is good news, but there is still a small pleural effusion that doctors must watch. If this gets larger, there is a possibility doctors will have to draw some fluid from the effusion and check to see if she has chylothorax. This is issues with her body breaking down fat content. But, there has been another mistake. Yes, you heard me correctly, another mistake!! This time with the way she was being fed through the tube. Last night she was given 77ml's an hour continuously through the ng tube. This shouldn't have happened. She was volmitting by 1:30am due to an overload. This volume added up to being over 2 ounces an hour, over 8 ounces for 4hours. Twice as much as she is suppose to get. She is only suppose to get 40ml's an hour. Did I tell you that I feel like a nurse myself these days? I now know how to calculate the formula as to how much she will get through continouos feeds tonight. So it will be done correctly!! This could be the only problem. I pray that it is. If so the effusion should clear up and if our eating issues subside, we may get to go home soon. My guess is no sooner than Monday, but that is better than what I have had in my mind. I've been thinking it will be weeks before we even could think of going home. Pray that the feedings go well tonight and the effusion is minimized by the xray in the morning.

Okay, now I have to make confessions to my heart mom friends:

Confession#1) I think I have always down played feeding issues. I now know how difficult this situation can be. Even with a feeding tube, there can be problems. Mackynlee can not have too much fluid, but can not go with too little either. There's no exact formula, so for every baby it is different. This is just figured out by trial and error. It is very frustration and can cause many set backs!!

Confession#2) As I have read about different ones of you with heart babies close to a hospital, and as I have met different ones at CHOP with heart babies that didn't leave but a few hours away from the hospital, I always thought you had it a little easier in that aspect as I did not being able to get in my car and drive a couple of hours to get home and be with my other children. Well, I have realized since I am just two hours away from my home that it is not as easy as I thought. I am planning to go home tomorrow, but I am so not at peace about this. Meemaw is going to be with the baby. I know she will take good care of her. I trust her so much and she knows Mackynlee almost as well as me. But there is just so many feelings and thoughts about leaving her here. Like I said, much more difficult than I ever imagined.

Confession#3) This is also about living close to the hospital. My 3 year old got to spend the day and night with me yesterday. This was good, but also tiring. Visiting with your babies in the hospital setting is so not fulfilling, but I guess it is best to get to see them, than being at CHOP where I cannot see them at all.

Many of you have told me that you have no idea how I keep my carepage up so well. It is definitely easier to do so at CHOP than here in MS. I think it is because I had myself on a schedule there. I never had any visitors, so there was plenty of time to journal. Even though I enjoy keeping my carepage up, it is more difficult for me right now. Maybe I am just sick of everything!! Sick of the hospitals, nurses(especially the ones that don't know their head from a whole in the ground), doctors, educated guesses, big words I don't understand, stupid beeping noises, and most of all those ladies that check vitals!! I hate the sound of their squeaky little things they push!! I have had to make them come back later to get vitals because Mackynlee was almost asleep. I ask them to come back when she is sound to sleep. I know they have to do their job, but give us a break. We are on a heart monitor and SATs monitor.

Our thoughts and prayers go out to the family and friends of Mike Thornhill. He passed away yesterday. He is a friend and neighbor of ours that was in a motorcycle accident a few weeks ago.

For the Lord does not abandon anyone forever. Though he brings grief, he also shows compassion according to the greatness of his unfailing love."
Lamentations 3:22-26; 31-32

Dear Lord,
Please help this family in this time of loss and overwhelming grief. We don't understand why life is filled with such pain and heartache. But I pray this family will turn their eyes to You and seek to find the strength to trust in Your faithfulness. I pray they will wait on You and not despair and will quietly wait for Your salvation. Please show this family your compassion, Lord. Help them through the pain. Though we can't see past today, we trust Your great love will never fail us.
Amen

Moved to a Room

2009-10-19T05:44:00.000-07:00

1 Thessalonians 5:18

In every thing give thanks: for this is the will of God in Christ Jesus concerning you.

If we want to know the will of God for our lives here is one clue: Give thanks in all circumstances.

One might say, "How could I give thanks? You don't know my circumstances. I have absolutely no reason to give thanks for what happened to me." But in not giving thanks we relegate ourselves to the tyranny of a broken and fallen world.

The Bible speaks of a fallen creation that needs rescue. Giving thanks reminds us and aligns us with God's rescue plan for our lives.

Yesterday we got a good surprise and a bad surprise. We were able to be released from the PICU and moved back to the floor. Our bad surpise is that we got a feeding tube. I asked all to pray for improved eating, all did and God answered the prayers (just not the way I wanted!!). Oh well, it is not the end of the world. She should only have it for a couple of months. The good thing about the feeding tube is that we can give her meds through it!!! Yay. She hates the tastes of several of her meds, so no more fighting to get them down her for a while. I want to share with you what Meemaw posted to my face book page. She said it best:

Thank you Lord for the feeding tube which will sustain this precious life as she regains her strength and her body heals. Please keep Your hand upon her and limit the days that the tube will need to remain in place. We long for the day when all Mackynlee's problems are resolved and we trust in You to complete her healing in Your perfect timing. May all who play a part in her care be positively effected by this precious child and her family. Help all of us who have had the privilege of being a part of Mackynlee's life learn the lessons she is helping You to teach us.

We are not sure when we will be able to go home. Neurologist says from her standpoint it is fine. Cardiologist says no way just yet. Her heart is still enlarged from the stress of Thursday night. There is fluid still in the chest area, but the pleural efusion has subsided (no drainage tube needed for sure).

Hospital life is really wearing on me. My body is sore! I feel like i have been lifting weights. I guess it is because of my comfy recliner/bed that I have been sharing with Mark. LOL

Today I will talk with a pediatric nutritionist. The nutritionist that I spoke with over the weekend acted as if it were no big deal if she ate or not. Then I found out she was an adult nutritionists, not a pediatric. I hope to get set up with a pediatric nutritionist in Hattiesburg. Does anyone know a good one, or one at all in that area?

BE THANKFUL

Be thankful that you don't already have everything you desire. If you did, what would there be to look forward to?

Be thankful when you don't know something, for it gives you the opportunity to learn.

Be thankful for the difficult times. During those times you grow.

Be thankful for your limitations, because they give you opportunities for improvement.

Be thankful for your mistakes. They will teach you valuable lessons.

Be thankful when you're tired and weary, because it means you've made a difference.

It's easy to be thankful for the good things.

A life of rich fulfillment comes to those who are also thankful for the setbacks.

Find a way to be thankful for your troubles, and they can become your blessings.

SEIZURES

2009-10-17T22:41:00.000-07:00

Just met with a neurologist. (Weird meeting with a doc at this time of night on a Saturday night.) I left the hospital to go to Wal-mart about 10ish and she came by. Mark told her to come back. To my surprise she did. Her name is Dr. Bruce. She is going to be our neurologist after we are discharged for two reasons. She actually came to talk with us, wasn't in a hurry, and has answers for us. She watched a home video that I made of one of Mackynlee's "episodes". Mackynlee has been having seizures. The seizures she is having are called complex-partial seizures. Dr. Bruce has increased her seizure medicine and has given me the peace of mind I have been needing. She has explained everything very well. If I feel uncomfortable after returning home, I may call her or email her at anytime. These seizures should not cause damage to her brain and she should eventually stop having them. The brain bleed is not as bad as it was a week ago, but it is still there.

Mackynlee has had a good day today. We may get to move to a room tomorrow. We really enjoyed all of our visitors today. The day passed so quickly.

Sundays are always the best day! Everyone joins together in prayer. Here's a list.

Specific Prayer Request

Pray for continued overall improvement (fluid goes away, no more seizures, eating improves).

Pray for us to be able to go home soon and feel okay about taking her home.

Pray after we return home all of these issues will be no longer. Pray we have a peace of mind that all will be okay.

Pray for Shelby and Connor during our time away from them once again. Even though they have been for a visit, it is not the same as being at home together as a family. Being at home as a family was only a few days between hospital stays.

Thank you all for your prayers. It is so nice and releaves such stress and tension knowing what a huge group of prayer warriers we have lifting us up each day. Words cannot express our appreciation.

2 Chronicles 7:14-15
If my people, who are called by my name, will humble themselves and pray and seek my face and turn from their wicked ways, then will I hear from heaven and will forgive their sin and will heal their land. Now my eyes will be open and my ears attentive to the prayers offered in this place.

Chest X ray Looking Better

2009-10-17T06:57:00.000-07:00

The Serenity Prayer

God grant me the serenity
to accept the things I cannot change;
courage to change the things I can;
and wisdom to know the difference.

Living one day at a time;
Enjoying one moment at a time;
Accepting hardships as the pathway to peace;
Taking, as He did, this sinful world
as it is, not as I would have it;
Trusting that He will make all things right
if I surrender to His Will;
That I may be reasonably happy in this life
and supremely happy with Him
Forever in the next.
Amen.

--Reinhold Niebuhr

Trust in the LORD with all your heart
and lean not on your own understanding;
in all your ways acknowledge him,
and he will direct your paths.

Proverbs 3, 5-6

Mackynlee had a very good night last night. She is looking much better and acting more and more like herself. The chest xray from yesterday did show a decrease in the fluid. Our heart doc has put her on several IV dieuretics to decrease the fluid. The xray shows from today that the fluid has decreased again!! Heart doc just came by. She feels better about things from a cardiac view.

The MRI shows that the brain bleed is no longer active. There is still blood there. This will take some time to go away. Doctors do think this is what is causing her to have headaches, agitation, and "episodes with her eyes, etc". Neurologist will be coming by today to discuss this in detail.

Mackynlee is not breathing heavy at all anymore. The nurse said her #'s have been stable. She was wondering if we would be moved to a room today. I guess we will find out after doctors make rounds this morning. Either way is fine with me. I do like being here in the PICU. After all we went through on the floor, being here and monitored so closely gives me a piece of mind. If we are moved to the floor, it will be to the heart floor.

Shelby and Connor came to the hospital last night. Shelby got to visit with Mackynlee. I actually left the hospital for the first time. Meemaw and Stephen sat with the baby. Mark and I took Shelby and Connor to Bonsai. This was Connor's first time there. He thought the fire was too cool. I enjoyed taking a little break and being with them. They are still in Jackson today. They spent the night with Meemaw and Stephen. We plan for them to hang out with us at the hospital today, and then head back to Columbia. Not sure how they are going to get there. Meemaw may go home since Mark is here. So, they may ride with her. I don't think our moms are coming back to the hospital today. They were both here yesterday for a while. Perry, my brother, brought Mackynlee a balloon. She has really been watching it this morning.

I was so glad Cindy Stogner came and spent the day with us yesterday. Meemaw got to go rest. She wouldn't leave me by myself. I enjoyed the company. When we got moved to a room in the PICU(we were hanging out in an open area to begin with), I let Cindy watch the baby and I crashed!! She tag teamed with my mom. I don't know how long I slept, but it was very much needed. I also loved the t-shirt you got me Cindy. I am wearing it today. The shirt has a beautiful cross on the back and it says IN HIS HAND IS THE LIFE OF EVERY CREATURE AND THE BREATH OF ALL MANKIND.
JOB 12:10 Thanks Cindy. A new shirt always makes things better!! Enjoying the magazines too!!

Bro. Tim also came by yesterday. He was hopping. I told him I was mad that he came, but he had to come to Jackson for a doc visit anyway. I wasn't quite as mad when he told me that. He had a touching prayer with us. We appreciate him stopping by so much, but we do not want him to become exhausted. He had knee surgery last week.

It is so good to have Mark here. This was part of our wedding vows: I offer you my solemn vow to be your faithful partner in sickness and in health, in good times and in bad, and in joy as well as in sorrow. It really makes a difference to have that support. I am so burdened for these children that are here without parents. A nurse said to me that many belong to single moms that have other children. I just cannot imagine not having someone to lean on. Neither could I imagine leaving my child here. When Mackynlee was in the CICU at CHOP, she had one on one nursing care. We left the hospital to eat, etc. I never felt bad about it, because she was in excellent care, and it was never for a long period of time. These moms have no idea if their child is being taken care of. Most of these do not have one on one care from nurses. It is just hard to see. One child cried for his mom all night. It was such a pitiful cry. I have found out that his mom was with him. He was just in much pain. The difference here from the CICU at CHOP is that there were only heart babies in our unit. Here it is any child that is critical. There are many different reasons and sicknesses mixed together here. (Hope that makes sense.)

Being Monitored More Closely

2009-10-16T08:34:00.000-07:00

Proverbs 3:5
Trust in the LORD with all thine heart; and lean not unto thine own understanding.

Mark 10:27
And Jesus looking upon them saith, With men it is impossible, but not with God: for with God all things are possible.

We have had an eventful night. Rapid Response was called to our room twice. The last time they were called to our room, we were moved to the PICU stepdown. I feel much better being here than I felt about being on the floor. I don't even know how to tell what all has happened. Her meds were not given because she was on ppo. She was given IV fluid for a lengthy period of time without her lasix. Her body could not handle it. She has had sleep apnea episodes, heavy breathing, sats dropping. Now the cardiologist says we have a pleural efusion. This is going to take several days to get better. The plan is to treat her with lots of dieuretics. If this doesn't work, a tube will be placed. I pray hard this is not what happens.

I told heart doc that Mark is screaming, "Go back to CHOP." She assures me if we need to be there she will send us. Right now it would be dangerous for Mackynlee to fly because of the fluid. Dr. Shores says all of these issues can be handled here for now.

We know that there was blood seen on the MRI, but we do not know yet if it worse, the same, or not as bad as when we were at CHOP. Hoping to find out later today. Cardiologist said she has put word in for the neurologist to get by today and discuss all of this with me.

Although this has been a horrible experience here at UMC, there are many good doctors and nurses. I feel now we are on the right track. I have had many apologizing to me. My response is: POOR COMMUNICATION. I have spoken with nurse managers and later today I am speaking to a person that is over the hospital.

I have picked about my improvement plan for UMC from day 1, but now I am serious about it. I am talking and emailing people. There are many changes that can be made here that will not cost this hospital a thing. I am trying to keep my cool, but get my point across!! I have many stories to tell.

Meemaw was up with us all night. She is now sleeping at Stephen's. Cindy Stogner is in the waiting area. No one is allowed back here except for parents until after 12:00. Then one visitor at a time accompanied by a parent. We will remain here in the PICU stepdown for now. If we are moved, we will be moved to the heart floor. The nurses there have more experience with heart patients.

Thanks Jarod Chance for stopping by. It is such a warm feeling to talk to other heart parents. I aslo enjoyed a visit with Sherry Milner and a phone call from Julie Crump. Both moms of special babies!!

Mark is on his way here. He has been offshore. I decided it were best if he were here in case decisions need to be made. Things can get better in 5 minutes or can get worse in 5 minutes or not change in 5 days. This is a roller coaster ride. Anything with these heart babies is serious!!!!

Shelby and Connor are coming with him. Shelby can come in to see Mackynlee for a few minutes. I think this will be good for Shelby and Mackynlee.

Mackynlee just took a two ounce bottle of formula. Nurse says this is a really good sign!!

Meemaw keeps saying God is here. I have read this over and over.

I am God.

Today I will be handling all your problems.
Please remember that I do not need your help.

If the devil happens to deliver a situation to you
that you cannot handle, do not attempt to resolve it.

Kindly put it in the SFJTD (something for Jesus to do) box.
It will be addressed in my time, not yours.

Once the matter is placed into the box, do not hold on
to it or attempt to remove it.

Holding on or removal will delay the resolution of your problem.

If it is a situation that you think you are capable of handling,
please consult me in prayer to be sure that it is the proper resolution.

Because I do not sleep nor do I slumber,
there is no need for you to lose any sleep.

Rest my child.

If you need to contact me, I am only a prayer away.

Finally in MRI

2009-10-15T14:45:00.000-07:00

Mackynlee is in the MRI right now. We are waiting for her to come out. This has been a very aggravating day!! Much needed change here at this hospital. I know we will not know anything until tomorrow. I may update again later, if not, assume all is okay. When we leave here we will go up to recovery.

Trying to be more positive

2009-10-15T06:47:00.000-07:00

“And we know that to them that love God all things work together for good, even to them that are called according to his purpose.”

(Romans 8: 28)

Not a lot to share this morning. We are waiting on the MRI to take place. Our scheduled time was at 8a.m. We have the same, wonderful nurse again today. We also have a student nurse and her "teacher nurse" with her. Sure we will be getting lots of attention. The pediatrician that came by this morning thinks we will have some answers later this afternoon. He feels like the we will know the MRI report today. He also feels like he will be able to tell us if we will go home soon or have to camp out here for a while.

Yesterday I posted some one line christian funnies. The last one said:
LIFE IS NOT ABOUT WAITING FOR THE STORM TO PASS;
IT IS LEARNING HOW TO DANCE IN THE RAIN.
I have come across this saying many, many times. Some days I feel like that is what I do, but right now, I'm choosing to wait for the storm to pass. Meemaw was enjoying getting to know people yesterday. She was telling me all about the children in the rooms beside us. I choose to keep my door closed. I'm just not wanting to hear others stories right now. I feel bad about this, I'm sure it will pass. I am working on a better attitude. Trying not to be so aggravated about the non communication issues here at UMC. Hoping to get Shelby and Connor here in Jackson tomorrow if we find out today we will be camping out here for a while. That will make things better, too. Shelby is pretty upset about this. That upsets me.

I have been reading a lot this morning. Mackynlee is sleeping. I have been trying to get my mind back focusing on positives. I want to share a true story from one of the blogs I follow. Rereading this story reminds me God is in control and He can perform miracles. HE is the Great Physician!! This is a long story, but it is true and awsome.

A Story of Grace
Sandi

My husband and I found out we were expecting our fifth child in early June 2002. My other children are son (1993), son (1995), and twins - daughter and son (1999). We were very excited about the news and everything seemed “normal” as I began the familiar symptoms of nausea, moodiness and fatigue and I silently prayed for an uneventful nine months.

During my 1st doctor’s visit, the need for prenatal testing (Chronic Villa, Amino, triple screen) was brought up by my doctor. I listened politely, but quickly informed him that I was really not interested and that I would be committed to the pregnancy regardless of any anomalies. He went on to explain to me that I do not know what I would do if I had the information and I should get it anyways. Since I continually declined testing, the doctor wanted to make sure that my ultrasound was done right at 18 weeks.

The ultrasound date came quickly (Monday, September 9, 2002) and my husband and I were excited to see our growing baby. The "routine" ultrasound seemed to be moving along o.k., although it took a very long time and the technician seemed to be taking a lot of pictures of my baby’s bones - arms, legs, feet, hands, etc. We thought this was rather odd and joked between ourselves with eye gestures and smiles. After all of the ultrasound pictures were completed, the technician then left for a long time when she returned, she began taking additional measurements of our baby’s kidneys. I immediately started to worry, but was somewhat relieved that we were not immediately referred to the staff doctor. After that, we were free to go home.

I called my doctor that afternoon, and he later called me back and announced that there were some problems with my baby. Over the phone, he told me that my amniotic fluid was very low; my baby’s bones were small; the femur bones were curved; the head was odd shaped, and the kidneys, stomach and bladder were abnormally sized. In addition, the report said that my baby’s left foot was turned - possibly ‘clubbed’. He referred me to a perinatalogist - and added that the report indicated a pregnancy which in his opinion “smelled liked chromosomal problems” especially in light of my advanced maternal age (37) and that I should keep my options open.

My husband and I quickly reacted. We were lucky enough to get an appointment with the Director of Ultrasound who is a Board Certified Perinatalogist at a well regarded research facility in our major city. The hospital and our doctor both have national reputations in handling high risk pregnancies. We were hopeful that the small local hospital that performed the 1st ultrasound was simply wrong and that the specialists here would set the record straight. My ultrasound was scheduled for Thursday am September 12th.

Our world would never be the same after that day. After an hour long ultrasound performed by a highly skilled technician, the nationally regarded perinatalogist personally came in to perform a second ultrasound (done in uncomfortable silence).

We watched in horror at the whispering between the growing team. Finally, the “curved” femurs were pointed out to my husband and I and we were then asked to wait for the doctor in the office down the hall. The doctor herself arrived about 1/2 hour later. The doctor immediately informed us of the devastating diagnosis--a Lethal type of Skeletal Dysplasia. As a result, there was no reason to mince words—“your baby will die.”

Lethal Skeletal Dysplasia, the doctor explained, is a rare form of dwarfism where not only are the child's arms and legs extremely short /malformed, but the chest cavity is very small. In these circumstances, a baby cannot sustain life for more than a few hours because the narrow chest cavity does not allow the lungs to development properly, allowing them little room to expand and provide the proper amount of oxygen necessary to sustain life. So long as the baby is attached to the mother, she will develop and grow. However, the cutting of the chord is itself the severing of the only lifeline to sustaining the child. As a result, the baby dies of respiratory distress. The options: 1) “Interruption “ of the pregnancy, or 2) continue on, with periodic monitoring of the baby’s condition and prepare for a burial shortly after the birth. We left in a pool of tears and shattered dreams.

Over the course of the next few days, my husband and I discussed our limited “options”. We felt convicted in not terminating, although we did not yet quite understand how long we should carry the baby (i.e. whether or not we should deliver early after seven months?). We counseled with friends, family, and priests. We had such a range of advise, however, one thing really hit home with us. My sister-in-law’s priest explained the confusing situation in such clear and beautiful words - “God does not value a life as a number or years (or even days) we’ve spent alive here on earth, all life is equally valuable to God, no matter how short and we can never fully understand the impact of one life on all of humanity”. It became clear to my husband and I that there really was no decision to make - God was ultimately responsible for the birth (and inevitable death) of my precious child, and to his will we commended her life.

We decided to carry our child to term and to love her for the time that she would spend with us - inside of me. As we made this decision, we embraced her sweets kicks each night; we found out the sex of our baby (something we had never done); and named her the name Grace which means an “undeserved gift” from God.

My original OB, upon receiving the ultrasound report and learning of my desires to carry to term, quickly dropped my case. He did not want to handle my prenatal care and even said that 90% of people with my diagnosis would have “made the appointment” by now. I transferred my care to the perinatal facility, who provided an entire team of specialists that would closely follow our case.

Over the next several months, I entered a fetal assessment program and had ultrasounds performed monthly to monitor my baby’s progress. Our meetings were coordinated by the Director of Genetics , who was not sensitive at all to my decision not to terminate. In fact, until 28 weeks had past (and a termination was no longer possible in our state), this topic was the focus of our monthly meetings. My husband and I stayed the course of our decision and avoided the director's attempts to shed doubt and fear. However, I must admit - It was very difficult not to be bothered by his comments and advice.

The diagnosis of our daughter’s condition was validated at each ultrasound: small femur bones (and other long bones); an easily manipulated bone structure; and a very narrow chest cavity. Her feet were always perplexing to the doctors - no one was ever quite sure what was wrong with them and this apparently was all part of the skeletal dysplasia. During one of the assessment appointments, I had a 3 dimensional ultrasound. A beautiful clear image of daughter’s face was given to my husband and I. We kept this image on the refrigerator door and it carried me through the tough times and me believing in this little life inside of me (although the GE commercials back dropped by the song ‘the first time ever I saw your face’ were simply too hard to handle). I longed for the day to hold her - even if her time alive was very short. I longed for her just the same.

The last of my six separate ultrasounds was performed on December 30, 2002. Grace’s measurements were so poor at this time that they stopped the ultrasound after measuring only one side of her body - in the exam room were the Director of Ultrasound, Director of Genetics, two neonatalogist and a technician. They all agreed that the prognosis of Lethal Skeletal Dysplasia was present and would take Grace’s life upon birth. We provided a birth plan, which stated that there would be no ventilation. Our birth plan stated that the baby was to be wrapped in a blanket and given to my husband and me after birth so that we could spend time with her - her predicted life span “4 to 6 hours”. The hospital agreed to let our 4 other children come to see their sibling on her birth day. We talked to our priest who agreed to come to the hospital to baptize the baby when she was born. The only other arrangements we had made were with the cemetery.

On January 8th, 2003, I started to have some slight cramping and other symptoms indicating that I may be going into early labor. My husband had a short trip to Arizona planned and he was leaving on the early flight the next day. I told him about my symptoms and he insisted that I call my doctor. My doctor said to come to the hospital in the morning and he could check me out. Convinced that I may be going into labor, I packed my bags and loaded them in the car. My husband rescheduled his flight to the afternoon.

On the morning of January 9th, I was hooked up to a fetal monitor and checked for dilation/effacement at the hospital. The doctor calmly stated that I had not dilated at all and my cervix didn’t appear shortened. He said that he was confident that I would not deliver until closer to my due date - February 18th. He told my husband to catch the next plane out. Relieved by the news, I drove my husband to the airport on an unusually warm and sunny January day. Feeling better than I had felt in months, I drove home and felt and unusual peace and happiness. Not that my daughter would live - but just that God would give me strength to endure what lied ahead for us. Despite mental lapses caused by such things as date on the milk that wouldn’t expire until after my baby would be born and die, I arrived home with a renewed energy and focus.

At about 2:00 p.m. that day, I received a phone call from my husband. He had boarded his flight and waited about 1 hour on the runway to take off. The fog was so bad in Phoenix, however, that they had to postpone the flight for several hours. The plane literally deboarded the passengers. My husband travels a lot for business and never in his many years of flying has he ever deboarded a plane - and to deboard for FOG in the desert! Things were really strange today. My husband cancelled his trip that day as he would miss the afternoon meeting he had planned to attend. I was so happy to hear he would be home that evening.

Incredibly, at about 11:30 p.m. that same evening, my water suddenly broke (35 1/2 weeks gestation). We called my parents to come stay with the kids and my husband and I left for the hospital. Our adrenaline was high and are emotions ranged from fear, sadness, longing to finally hold our baby, and confusion. We arrived at the hospital about 12:45 a.m., my doctor examined me in triage, checked position of the baby via ultrasound, ordered an epidural for my comfort, and informed the nurse that there was no need for a FETAL MONITOR. The doctors were sure that Grace would not live—the need for monitoring was deemed unnecessary.

I labored throughout the night. In the morning, we called our priest to let him know that Grace was to be born and asked if he could come baptize her. Unfortunately, the weather had changed and our wonderful 75 year old priest was unable to make it downtown. Instead, he said many tearful prayers with us over the phone that morning. He also set-up the in-house Chaplain to baptize Grace.

With the help of pitocin, Grace Marie was born at 11:19 a.m. All eyes were on my daughter as she emerged screaming from the womb - and my first impression - Wow! She doesn’t look that unusual to me. Weighing in at 4lbs. 2 oz. - Grace was indeed a small baby. Doctors and nurses immediately took and began to access her breathing and vitals. At this time there was no less than 8 to 10 medical doctors/nurses in the room assisting. In addition, several other resident doctors and researchers were in the doorway and hallway, hoping to catch a glimpse of the “dysplasia baby”. Our nurse, who by this time had become completely empathetic to our situation, had literally forced unnecessary observers away from our room.

The doctors and nurses were busy, yet no one was saying very much. They gave Grace a little oxygen to “pink her up” and, given the fact that Grace was 5 1/2 weeks early, her respiratory wellness was no less than unbelievable. Graces’ apgars were 8 and 9. They wrapped her in a blanket and handed her to my husband and I. We joyfully embraced Grace and took lots of pictures of her.

Grace was cleaned up and while she was gone my parents and our children arrived to see Grace and to witness her baptism. Soon after, my two sister in laws arrived. The Chaplain quickly arrived and performed the most beautiful baptism of Grace right in our Labor and Delivery room. As she held Grace Marie , she proclaimed boldly that God would make Grace whole and complete as he was the “greatest Doctor of all”. We were all crying and so happy that Grace was alive long enough to be baptized. After the baptism, we took pictures of everyone holding Grace - despite the fact the we were still not expecting much more time with Grace. Everyone was so happy. We were celebrating.

About an hour later, Grace began a form of respiratory distress - "grunting". The neonatal nurse who stayed with us since her birth needed to take Grace to the NICU for evaluation. We all feared that this was the beginning of the end for our beautiful daughter. The jovial mood in our room immediately changed to sadness. Our family left saying tearful goodbyes to Grace and me and my husband headed out to talk to the neonatalogists.

The neonatalogists wanted to do a variety of tests on Grace right away. They informed us that a team of pediatric doctors were already waiting for Grace at Children's Hospital - connected to the delivering hospital by underground tunnel. We agreed to have Grace tested. My husband went with Grace to Children's Hospital. During the tests, Grace screamed so loud my husband couldn’t believe it was our little 4 lb. baby.

When they returned, the doctors took Grace back to Special care and we waited anxiously for the results of Grace’s tests. About two hours later, the head of neonatology personally called us and asked if she could meet with in our room. At about 6:30 p.m. she arrived. She excitedly told us the unbelieveable news - the X-rays indicated that Grace did not have a skeletal dysplasia (lethal or non lethal) and that her bone structure was very proportionate. They felt she was small (especially her femur bones), however they did not feel she was out of normal ranges (10th percentile for height and weight). The doctor announced also that Grace had oxygen saturation of 100% (apparently the respitory Grunting had resolved itself when Grace screamed the mucus out of her lungs during testing), she was nippling bottles well, and holding her own temperature. They had no reason to even keep her in special care and were bringing her down to our room to “room in”!

Needless to say, we were in a complete state of shock, my husband and I just hugged and cried. Family and friends were called and we cried with each one of them. Everyone was stunned by Grace and the end result of my horrible pregnancy. My husband and I spent the next two days in the hospital with Grace - we took turns just holding her, staring at her. We were so filled with happiness and thankfulness. The nurses had a baby shower to celebrate the life of Grace. On Sunday, we were discharged together -Mom and Grace went home on the same day. The memorial service we had planned for Grace was immediately changed to a celebration - A celebration of LIFE!

Grace is now 15 months and is an exuberant bundle of energy. She is walking, talking and doing all things a normal 15 month old would do. She is still a tiny little thing -16.5 lb. at one year (about 5-10%), but it has not stopped Grace one bit. She is a light to our whole family and a constant reminder that you never can lose faith even when all seems hopeless. I shudder to think of my feelings on this day had we listened to the many specialists who felt “interrupting” this pregnancy would be our best option. Would I have ever known the truth about my lovely daughter? Even if the diagnosis had been correct, the hours or even minutes holding the precious gift that God had planted in me would have been easily worth the few months of pain and suffering. Later, many people told us that seeing me carry this baby had affected their lives in ways I would never know. We are forever grateful that we listened to our hearts. Thank you for allowing me to share my story.

2007 Update

Grace Marie is now four years old and continues to be a symbol of hope and faith in our family. After the first year when Grace continuously stayed just “off the chart”, her growth has been normal in the 5-10th percentile. Her enthusiastic pediatritions predict that she will be 5’2” at adult height! Grace is extremely bright performing beyond her age, and plans to one day be a princess ballerina. She takes ballet lessons, goes to preschool, art class and enjoys her brothers/sister immensely. Her imagination keeps us all on our toes! Her story is always on my mind – A day does not go by when I ponder on her horrible diagnosis. My heart aches for the “Grace’s’ that were never brought to their natural term. As we found very little support and hope during my pregnancy, I have made it my personal mission to widely share my story. It has already been included in 2 publications including Defiant Birth that was published and released in 2006. If we can help one other with our story, we feel our goal has been fulfilled. Thank you again for allowing me to share.

MRI Tomorrow

2009-10-14T17:51:00.000-07:00

Mackynlee had an EEG today, but not an MRI. MRI will be in the morning. We really do not know anything more than before being admitted here to UMC. EEG did not show anything. Dr. Shores came by. She is our cardiologist here in Jackson. She feels like whatever is going on is neurological and is an effect of being on the heart/lung bypass machine during surgery. I do not understand because Mackynlee was fine for a period of time after surgery. Doctor says this is very unusual for a baby to act this way after this surgery. Hopefully we will find out more tomorrow.

We had a great supper tonight. Stephen Porter brought us Chili's. He and Meemaw have gone to his house for the night. She will be back in the morning.

We also enjoyed a visit from Sherry Milner today.

Thought I would share some laughs with you.

Christian One-liners

Don't let your worries get the best of you;
Remember, Moses started out as a basket case.

Some people are kind, polite, and sweet-spirited
Until you try to sit in their pews.

Many folks want to serve God,
But only as advisers.

It is easier to preach ten sermons
Than it is to live one.

The good Lord didn't create anything without a purpose,
But mosquitoes come close.

When you get to your wit's end,
You'll find God lives there.

People are funny; they want the front of the bus,
Middle of the road, And back of the church.

Opportunity may knock once,
But temptation bangs on the front door forever.

Quit griping about your church;
If it was perfect, you couldn't belong.

If a church wants a better pastor,
It only needs to pray for the one it has.

We're called to be witnesses,
Not lawyers or Judges.

God Himself doesn't propose to judge a man until he is dead.
So why should you?

Some minds are like concrete --
Thoroughly mixed up and permanently set.

Peace starts with a smile.

I don't know why some people change churches;
What difference does it make which one you stay home from?

A lot of church members singing 'Standing on the Promises'
Are just sitting on the premises.

Be ye fishers of men.
You catch 'em - He'll clean 'em.

Stop, Drop, and Roll won't work in Hell.

Coincidence is when God chooses to remain anonymous.

Don't put a question mark where God put a period.

Don't wait for 6 strong men to take you to church.

Forbidden fruits create many jams.

God doesn't call the qualified,
He qualifies the called.

God grades on the cross, not the curve.

God loves everyone,
But probably prefers 'fruits of the spirit' over 'religious nuts!'

God promises a safe landing, not a calm passage.

He who angers you, controls you!

If God is your Co-pilot, swap seats!

Prayer: Don't give God instructions, just report for duty!

The task ahead of us is never as great as the Power behind us.

The Will of God never takes you to where
the Grace of God will not protect you.

We don't change the message,
The message changes us.

You can tell how big a person is
By what it takes to discourage him.

The best mathematical equation I have ever seen:
1 cross + 3 nails = 4 given.

If this blessed you in a profound way today,
Share it with a few friends to bless them!

I bet someone else will LOVE it too.

There is no greater treasure than a good friend!

Life isn't about waiting for the storm to pass.
It's about learning to dance in the rain.

MRI and EEG

2009-10-14T07:15:00.000-07:00

Mackynlee was admitted to Blair Baston at UMC yesterday. Long story short, I am concerned about her weird episodes of eye movement and body deviating to the right, constant moaning and groaning, and issues with eating. I called to tell Dr. Shores these concerns. She insisted we get in an ambulance to get her. I thought it not necessary, but that is what we did. I enjoyed the ride, so did Mackynlee. She slept the whole way and I visited with Donna, the paramedic on the ambulance. Todd: when you talk to her tell her I enjoyed our visit.

A ct scan was performed yesterday. One doc sees the bleeding on the brain, other doc does not. We will know for sure after MRI today. Doctors here think there could be some seizure activity going on. That is contrary to what docs at CHOP say.

I know she is not her normal self. I believe she is in pain much of the time. Hopefully these docs will find out what is going on and get everything under control. I want her back to "normal."

Doctors seem very concerned. I just don't like the fact that they are nervous because she has a HISTORY of Heart problems. Attending would not okay pain med that another doc ordered because of her history. This would not be an issue with CHOP docs on the cardio floor. Hopefully after Dr. Shores, our cardio doc, visits today she will help guide these docs and help them feel more comfortable with Mackynlee.

I will update when I can and when I find out more info. Tests were scheduled for 8. It is 9:30 and we are still in our room. Who knows when we will go for tests and when we will get results. She is resting peacefully right now. Nurse just came in to say not sure when we will be going for tests. That is no surprise to me.

"And Jesus went about all
Galilee, teaching in their synagogues, and preaching the gospel
of the kingdom, and healing all manner of sickness and all manner of disease among the people."
MATTHEW 4:23

Still it is hard to understand,
Why kids have to deal with sickness;
Nothing is worse when one so young,
Succumbs to an evil illness.

Why a young one should go through pain,
Doesn’t make any sense to me;
Yet they still smile and they play,
Making it plain for all to see.

They know that God is ever present,
They have true faith in the Lord above;
They will deal with their situations,
With help from their Lord’s guidance and love.

There may be a special friend involved,
Maybe a sweet blonde named Ginger;
Who'll pamper and spoil them rotten,
Could be a bright Golden Retriever.

She could act as their arms or their legs,
Could be that she even sees for them;
Wake them up for school in the morning,
And might cater to their every whim.

God does work in mysterious ways,
He gives them His love that's unending;
Must have been God that sent me this message,
So a prayer request for them I am sending.

A request to everyone that I know,
As well as to all who write in the Den;
Let’s all include these kids in our prayers,
And to Gingers who may be Heaven sent.

“Dear Lord, You are so kind and merciful,
We place all our faith and trust up above;
Watch over these children and their close friends,
And grant them a miracle through Your love.

We know that whatever You do,
It will be what is best for them;
You know so much better than we,
And You will make them well in the end.”

Lord, you love our child as You love all children,
Bring healing to Mackynlee who is not well.
Stay by her side and comfort her through this trying time.
Keep us ever mindful of Your loving presence
Bless us with Your powerful healing and comfort us also.
Thank You for hearing our prayer!

CONTINUE PRAYING FOR MIKE THORNHILL. HE IS NOT DOING WELL AT THIS TIME, BUT GOD STILL PERFORMS MIRACLES.

PRAY FOR MY FRIEND RHONDA PITTMAN. SHE HAS BREAST CANCER. SHE WILL BE HAVING SURGERY SOON AND CHEMO. POSSIBLY RADIATION.

Mississippi Bound

2009-10-08T19:28:00.000-07:00

“We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation”
(Romans 5:3-4, NLT).

Difficult times have helped me to understand better than before, how infinitely rich and beautiful life is in every way, and that so many things that one goes worrying about are of no importance whatsoever...-- Isak Dinesen

Mackynlee and I will be headed home on a commercial flight tomorrow. Our angel flight did not work out. Walter, the social worker, stood on his head this evening when we found out the angel flight wasn't working out. (WMP READERS: Walter is a black, male version of Martha Woods. Gotta love him!) He, and the doctors worked quickly to get all of the paperwork ready for the oxygen company and the airline. All is set to go. Just praying our oxygen will arrive here at CHOP in the morning. It is being overnighted to us. Also, pray I can figure out how to use it. If you get no post from me, we are on our way home. If things don't work out, I will relieve my stress through posting an update. CAUTION: It may not be a nice update. I'll try to keep my cool, but three weeks here is long enough for me. I love MS. I want to see Shelby and Connor badly!!

I want to end tonight (sounds like I'm preaching LOL) with this story. I want to dedicate it to my friends that I will be leaving here at CHOP. Coleen, (mom of two month old heart baby), Mike and Nichol (parents of Allie), Diane (mom of Lillian Grace), and a mom we had dinner with tonight at McDonalds. I never got her name, but she and her 4 year old, Cordelia invited Mackynlee and I to sit with them. I did not recognize her, but she recognized me. We met here on the cardiac floor at the beginning of our time here. Her 4 year old has down syndrome. She is recovering from heart surgery. She will be having brain surgery soon. The reason I did have not seen the mom is because she had a heart transplant about a year ago. She has been hospitalized herself during Cordelia's hospital stay, so she has not been able to be here. Her body had gone into rejection. I think God sent them to me to say "Hey life could be worse. It is not so bad after all."

Pray for Coleen. I do not think it is going well for her baby boy. They have been here since he has been born. To make things worse, she is a cardiac nurse herself. So, you can only imagine how hard it would be to actually understand all of the foreign language from the doctors.

Please pray Diane and Lillian will get to go home to Wisconsin soo.

Pray Mike and Nichol will get to take Allie home to be with her twin sister and twin brothers that are two. It is so difficult when a family has to be a part(especially under these not so good circumstances.)

Pray Cordelia will recover and go through her brain surgery like a champ!! She is precious. She loved Mackynlee.

"Lunch With God"
- author unknown -

A little boy wanted to meet God. He knew it was a long trip to where God lived, so he packed his suitcase with Twinkies and a six-pack of Root Beer and he started his journey.

When he had gone about three blocks, he met an elderly man. The man was sitting in the park just feeding some pigeons.

The boy sat down next to him and opened his suitcase. He was about to take a drink from his root beer when he noticed that the man looked hungry, so he offered him a Twinkie.

The man gratefully accepted it and smiled at boy. His smile was so pleasant that the boy wanted to see it again, so he offered him a root beer.

Again, the man smiled at him. The boy was delighted! They sat there all afternoon eating and smiling, but they never said a word.

As it grew dark, the boy realized how tired he was and he got up to leave, but before he had gone more than a few steps, he turned around, ran back to the man, and gave him a hug. The man gave him his biggest smile ever.

When the boy opened the door to his own house a short time later, his mother was surprised by the look of joy on his face. She asked him, "What did you do today that made you so happy?

"He replied, "I had lunch with God." But before his mother could respond, he added, "You know what? God's got the most beautiful smile I've ever seen!"

Meanwhile, the elderly man, also radiant with joy, returned to his home. His son was stunned by the look of peace on his face and he asked," Dad, what did you do today that made you so happy?"

He replied, "I ate Twinkies in the park with God." However, before his son responded, he added," You know, he's much younger than I expected."

Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around. People come into our lives for a reason, a season, or a lifetime. Embrace all equally!

Still Good

2009-10-08T07:38:00.001-07:00

This is what I started typing yesterday, but I never got it posted.

Mackynlee slept so peacefully last night. She has also rested a good bit today. (I have too.) She has become more and more alert. Her eyes are looking more and more normal. Today she would actually look at people when they would enter the room. She has been watching me move around the room. She did not seem to be bothered with the lights in the hallway at all tonight. We sat in the hallway for long periods of time and she would just look around. Her eyes have only looked funny a few times today, and that has been for short periods of time.

Same news today. We both rested very good last night. This morning she has been making the weird movement with her eyes. She also pulls her head back and to the right. Doctors say this will go away. Praying it will.

She has actually been saying Ma quite a bit. NANANANABOOBOO: Dada!! She is also smiling at me. I have seen very few smiles from her since Saturday.

Right now I am waiting patiently on details about when our angel flight will be bringing us to MS.

I have come across this story numerous times. I decided to share it with you. Many have said to me how they hate that I am still here at the hospital, etc. I have shared sorrows and laughter with two other heart moms this week. Although I am so ready to come home, I will miss both of them so much. I would much prefer being home with Shelby and Connor, but I have made the best of my time here. We do have to look for the good in all of life's not so good situations. I have enjoyed every minute of my time with Diane and Nichol. Keep these two ladies, their families, and their babies in your prayers. Here's the story.

A Room With a View

Two men, both seriously ill, occupied the same hospital room. One man was allowed to sit up in his bed for an hour each afternoon to help drain the fluid from his lungs. His bed was next to the room's only window. The other man had to spend all his time flat on his back. The men talked for hours on end. They spoke of their wives and families, their homes, their jobs, their involvement in the military service, where they had been on vacation. And every afternoon when the man in the bed by the window could sit up, he would pass the time by describing to his roommate all the things he could see outside the window. The man in the other bed began to live for those one-hour periods where his world would be broadened and enlivened by all the activity and color of the world outside.

The window overlooked a park with a lovely lake. Ducks and swans played on the water while children sailed their model boats. Young lovers walked arm in arm amidst flowers of every color of the rainbow. Grand old trees graced the landscape, and a fine view of the city skyline could be seen in the distance. As the man by the window described all this in exquisite detail, the man on the other side of the room would close his eyes and imagine the picturesque scene.

One warm afternoon the man by the window described a parade passing by. Although the other man couldn't hear the band - he could see it in his mind's eye as the gentleman by the window portrayed it with descriptive words. Days and weeks passed. One morning, the day nurse arrived to bring water for their baths only to find the lifeless body of the man by the window, who had died peacefully in his sleep. She was saddened and called the hospital attendants to take the body away.

As soon as it seemed appropriate, the other man asked if he could be moved next to the window. The nurse was happy to make the switch, and after making sure he was comfortable, she left him alone. Slowly, painfully, he propped himself up on one elbow to take his first look at the world outside. Finally, he would have the joy of seeing it for himself. He strained to slowly turn to look out the window beside the bed. It faced a blank wall.

The man asked the nurse what could have compelled his deceased roommate who had described such wonderful things outside this window. The nurse responded that the man was blind and could not even see the wall. She said, "Perhaps he just wanted to encourage you."

Epilogue...
There is tremendous happiness in making others happy, despite our own situations. Shared grief is half the sorrow, but happiness when shared, is doubled. If you want to feel rich, just count all of the things you have that money can't buy.

MONEY CANNOT BUY THE RELATIONSHIP I HAVE MADE WITH NICHOL AND DIANE IN THESE PAST FEW WEEKS!! I AM SO BLESSED TO KNOW THEM!

Psalm 121:7-8
The LORD will keep you from all harm— he will watch over your life; the LORD will watch over your coming and going both now and forevermore.

Home Friday?

2009-10-06T13:47:00.001-07:00

This mornings MRI did find a bleed in her head. It is between the skull and her brain; in between the large part of the brain and the small part of the brain. Not sure why this happened, possibly because of pain and tension during and after removal of the drainage tube Saturday. Doctors also feel like this pain and tension may have caused her fever to spike. You know when we are in enough pain, our bodies can do weird things. The doctors here say Mackynlee has taught them something they have never seen before. All are going to remember this in case another baby/child does the same thing. I guess Miss Mackynlee wanted to leave a legacy here at CHOP.

Both the neurology team and the cardiology team are agreeing on discharging us Friday, unless we go backwards. Talking with Walter about the angel flight in a few minutes.

Boy, the neurologists know bigger words than the cardiologists. It is so amazing!!

I forgot to tell everyone that while Mackynlee was in the CICU, she won several awards. 1)Prettiest bed award 2)Prettiest baby award and 3)Best personality award!! LOL.....

Father, before the mountains were born or You brought forth the earth and the world, from everlasting to everlasting You are God. You care for all of creation, the order of the universe, all people from past generations to the present, and You work powerfully and invisibly in our hearts. We are humbled by Your greatness and touched by Your kindness. We give You thanks and trust You for that which we don’t understand. We see only the fringes of Your ways, but that reminds us that Your power is what creates the works established by Your hands. You are our God, the rock in whom we trust and take refuge. Amen.

In every thing give thanks: for this is the will of God in Christ Jesus concerning you.
~ 1 Thessalonians 5:18 ~

I would also like to thank each and every one of you that know us and those who do not know us. We appreciate all of the time you have taken out of your life to keep up with our journey, and shower us with prayers. I love the following story that I want to share with you. We should all take it to heart.

Thanks for Your Time
Author Unknown

It had been some time since Jack had seen the old man. College, girls, career, and life itself got in the way. In fact, Jack moved clear across the country in pursuit of his dreams. There, in the rush of his busy life, Jack had little time to think about the past and often no time to spend with his wife and son. He was working on his future, and nothing could stop him.

Over the phone, his mother told him, "Mr. Belser died last night. The funeral is Wednesday."

Memories flashed through his mind like an old newsreel as he sat quietly remembering his childhood days.

"Jack, did you hear me?"

"Oh sorry, Mom. Yes, I heard you. It's been so long since I thought of him. I'm sorry, but I honestly thought he died years ago," Jack said.

"Well, he didn't forget you. Every time I saw him he'd ask how you were doing. He'd reminisce about the many days you spent over 'his side of the fence' as he put it," Mom told him.

"I loved that old house he lived in," Jack said.

"You know, Jack, after your father died, Mr. Belser stepped in to make sure you had a man's influence in your life," she said.

"He's the one who taught me carpentry," he said. "I wouldn't be in this business if it weren't for him. He spent a lot of time teaching me things he thought were important... Mom, I'll be there for the funeral," Jack said.

As busy as he was, he kept his word. Jack caught the next flight to his hometown. Mr. Belser's funeral was small and uneventful. He had no children of his own, and most of his relatives had passed away.

The night before he had to return home, Jack and his Mom stopped by to see the old house next door one more time.

Standing in the doorway, Jack paused for a moment. It was like crossing over into another dimension, a leap through space and time.

The house was exactly as he remembered. Every step held memories. Every picture, every piece of furniture... Jack stopped suddenly.

"What's wrong, Jack?" his Mom asked.

"The box is gone," he said.

"What box?" Mom asked.

"There was a small gold box that he kept locked on top of his desk. I must have asked him a thousand times what was inside. All he'd ever tell me was 'the thing I value most,'" Jack said.

It was gone. Everything about the house was exactly how Jack remembered it, except for the box. He figured someone from the Belser family had taken it.

"Now I'll never know what was so valuable to him," Jack said. "I better get some sleep. I have an early flight home, Mom."

It had been about two weeks since Mr. Belser died. Returning home from work one day Jack discovered a note in his mailbox. "Signature required on a package. No one at home. Please stop by the main post office within the next three days," the note read.

Early the next day Jack retrieved the package. The small box was old and looked like it had been mailed a hundred years ago. The handwriting was difficult to read, but the return address caught his attention.

"Mr. Harold Belser" it read.

Jack took the box out to his car and ripped open the package. There inside was the gold box and an envelope. Jack's hands shook as he read the note inside.

"Upon my death, please forward this box and its contents to Jack Bennett. It's the thing I valued most in my life." A small key was taped to the letter. His heart racing, as tears filling his eyes, Jack carefully unlocked the box. There inside he found a beautiful gold pocket watch.

Running his fingers slowly over the finely etched casing, he unlatched the cover. Inside he found these words engraved:

"Jack, Thanks for your time! -Harold Belser."

"The thing he valued most...was...my time."

Jack held the watch for a few minutes, then called his office and cleared his appointments for the next two days. "Why?" Janet, his assistant asked.

"I need some time to spend with my son," he said. "Oh, by the way, Janet... thanks for your time!"

MRI

2009-10-05T19:07:00.000-07:00

Mackynlee has been scheduled for an MRI in the morning. 6:30 PA time, 5:30 MS time. She will be sedated and extubated during this procedure. The MRI is of her brain. They are looking for signs of a stroke, seizures, pressures, etc. Neurologists were concerned today because her eyes roll back and to the right side. They do not move to the left when she is having an "episode". Also, there was concern because Mackynlee has been favoring her right side. She likes to look that way and lay that way. Well, her IV blew this afternoon, it is now in the right hand and she is favoring her left side. So, long story short, I think she is smarter than we all realize and the reason she was favoring a side is because of comfort.

The nurse and I now feel that nothing will be found. We have come to the conclusion, because Mackynlee has done so well this evening that the weird behaviors(? spelling, sorry) have just been because of pain and exhaustion. Today there has been longer periods where she acts her normal self and shorter times that she doesn't act like Mackynlee. I even dressed her today. (Karen and Lauren: I put her on the pink heart outfit you brought her. It looked beautiful on her. I wanted to take a pic to post, but she had a bad diaper and it got all over the outfit. It is being washed now. We'll put it on again soon. LOL) She and I took a stroller ride and she loved it.

Her eating is getting better. Her heart rate is dropping quite a bit while she is resting, but it goes right back up. Doctors and nurses think it is doing this because she is finally getting into periods of deep sleep.

One of the nurses that were here Saturday night, came by to check on us a little bit ago. She commended me on an excellent job. She said she would have gone postal if that would have been her baby in that shape. She said I had so much patience, and when it went away, it was time to go away and demand something be done to help Mackynlee. That made me feel so good to hear.

Game Plan: If nothing is found during the MRI tomorrow and we should know something by tomorrow evening or early Wed morning, and if she continues eating well, we may get to come home sooner than later. Now I really do not know when sooner is, that is just the game plan that the charge nurse shared with me.

Our friends from Wisconsin may get to go home this week!! I am so happy for them. They have been here since Sept. 10th.

Mike and Nichol's baby Allie is still having good days and bad days. Today has been a great day for them. She has finally been taken off of the vent. Allie had surgery the same day as Mackynlee.

What God Hath Promised
Annie Johnson Flint

God hath not promised
Skies always blue,
Flower-strewn pathways
All our lives through;
God hath not promised
Sun without rain,
Joy without sorrow,
Peace without pain.

But God hath promised
Strength for the day,
Rest for the labour,
Light for the way,
Grace for the trials,
Help from above,
Unfailing sympathy,
Undying love.

CHD Awareness

2009-10-02T07:59:00.001-07:00

I copied and pasted this from www.thelittleheartthatcould.blogspot.com. Sorry I waited til the day before to post it. Even if you cannot participate, read the facts about CHD's posted below.

CHD Awareness Balloon Luanch
It's time to spread the word.
I'd like to invite EVERYONE EVERYWHERE to join in and launch as many balloons as possible on Sat. Oct. 3rd. On each balloon you can attach a card, found below, giving facts about CHDs. Visit a dollare store near you and purchase as many balloons as you'd like! Print and attach your cards and launch away!!! (Please feel free to copy and paste, add or delete any information found on the card.) Hopefully this valuable information will provide some awareness of CHDs. Please feel free to tell your friends, family, and carepage families.

Congenital Heart DefectsTell someone you love about Congenital Heart Defects!

~CHD's are the most common birth defect in America~1 in 100 children (40,000 newborns a year) will be born with some type of heart defect
~CHD's are responsible for 1/3 of all birth defect related deaths
~20 percent of children who make it through birth will not survive past their first birthday
~Although a child is born every 15 minutes with a CHD, research continues to be grossly under-funded in America
~Of every dollar the government spends on medical funding, only a fraction of a penny is directed toward congenital heart defect research
~There are more than 40 different types of congenital heart defects. Little is known about the cause of most of them~There is no known prevention or cure for any of them
~More than 50% of all children born with congenital heart defect will require at least one invasive surgery in their lifetime
~The cost for inpatient surgery to repair CHDs exceeds $2.2 billion a year
~CHD is the leading cause of infant death in the US and in every country around the world
Support the Children’s Heart Foundation

Gives me chills everytime I read those facts about CHDs. So glad Trisha is getting out there and spreading the word. She is a strong, Godly woman who has been through a lot this year.

News on Mackynlee: We are out of the pod! YAY!! Still have our chest tube. BOOOOOO. Doctor wants chest tube to stay in one more day. We have had a crazy morning. The new baby in our pod went into cardiac arrest two times within 30 minutes this morning. The first time I wasn't kicked out because I was feeding Mackynlee. The second time I was kicked out. I heard them request some kind of surgical something. Keep this family in your prayers. He is a new baby here at CHOP, not even had surgery yet. Mackynlee and I got comfy in the rocking chair, then the person came to get blood work. Then we got comfy again, and Mackynlee projectile volmitted her formula. That's what the nurses get for not giving her a bath before now. She needed one so bad. She enjoyed every minute of it. I will post pics of it in a little. We were picking about it saying she was getting a spa treatment. There were three of us bathing her. Now I am praying she can rest. She is so tired, her eyes are blood shot. She cannot sleep for long periods of time in the pod, but now that we are in the room, maybe we will both sleep. The nurse has turned off the buzzers on our monitor. We have the bubbling of our chest tube, and the bubbling of the other baby's chest tube behind us. It is about to put me to sleep. The only problem, and I don't want this to sound mean, the baby behind the curtain sounds like she's gurgling/volmitting. Respiratory is in there and I don't know what kind of problem she could be having, but it sounds disgusting. Great, now the dad just walked in, he is noisy. Pray Baby Mackynlee gets more than a ten minute nap. She needs it so badly, and every little noise seems to interrupt her sleep. Other baby is gagging again. Gross. It is a tiny baby but is sounds like an adult.

The good thing about being in this room, I am so settled. That feels so good. I have my computer set up, I don't have to get it out of my backpack and put back. I have plug-ins to charge my computer, my cell phone, and Mackynlee's portable DVD player. I think this is going to be a great place to hang out for a few days with baby girl. Especially when that tube comes out!!!

I am going to the PRMH at some point today to get her stroller. Her nurse said I can take her for a stroll around the hospital. We just can't leave the 6th floor. At least I can take her to the family room and get me some coffee from time to time.

I have shared the following poem with my readers before, I want to share it again today. This is for you Trisha in memory of LittleJohnny. Keep on keeping on. Every word of this poem is so true. Whether you win or lose the battle, it applies to every life affected by a CHD. I see it here at CHOP>

Somewhere…someplace… today…
A family is waiting to hear…
Is something wrong with their baby?
The answers aren’t quite clear…
This family has entered an unwanted world…
And they just don’t know what to expect…
Somewhere…someplace… today
They first heard the words: heart defect.
And how they hoped this was not true…
And thought… this cannot be…
I too… know just how this feels…
For one day…this was me.
Somewhere…someplace…today…
A man and a woman embrace…
Their baby is in surgery…
They long to see his face…
They haven’t got to hold him yet…
Without…a cord or line…
They pace the room awaiting news…
And hope she’ll be just fine.
Prayers fill this busy waiting room…
And mom and dad are scared…
Somewhere…someplace..today…
The tiniest hearts are repaired.
Somewhere…someplace…today…
A child’s growing fast…
Smiling,laughing,thriving…
His mom thinks…can this last?
It’s almost easy…to forget…
That anything is wrong…
Somewhere…someplace..today…
Her child seems so strong.
Somewhere…someplace… today…
A little boy fights…just to live
A father holds his tiny hand…
His love…all he can give…
The doctor’s are all baffled…
They fear that he might die…
Somewhere…someplace…today…
A family says goodbye…
Somewhere…someplace…each year..
More than 40,000 families will see…
What it means…when something’s wrong…
They’ll face a CHD.
Today…for just a moment…
Stop…remember…reflect…
Make time to tell someone you know…
“I’ve been changed by a heart defect.”

Author - Stephanie Husted

Stephanie Husted is a free-lance poet who has a child with Hypoplastic Left Heart Syndrome. She enjoys encouraging other families through the written word. She lives in Michigan with her husband and two sons, Colin and Braeden

Surgery #2

2009-10-01T16:20:00.000-07:00

We had our 2nd surgery this past Monday. Lots of ups and downs, but for the most part Mackynlee is recovering fine. She is still in the CICU. Our prayer is that her drainage tube will be removed soon, and we will be able to go home to MS to our other children soon. We have been here in PA for two weeks. Missing Connor and Shelby a lot!!! I haven't been keeping my blogspot updated, but I saw where my friend Trisha has our blog website posted on her blog, so I am going to try to do better in keeping it updated.

A Big Scare

2009-09-10T12:38:00.000-07:00

Mackynlee's surgery is scheduled less than two weeks away. She started being restless on Monday, started running fever Tuesday, and crying continuously. I took her to the doctor yesterday (special thanks to Meemaw for riding with me). Praise God she has an ear infection. The doctor said if she had to get sick before surgery this was our best scenario!! She has already started feeling and looking much better. She slept all night long last night and was back at her usual, happy self this morning. This should not effect our surgery date at all. Pray she doesn't come down with anything else. We are keeping her in as much as possible to prevent her from being exposed to anything. When Shelby and I get home each evening we put our clothes straight into the washing machine and take a bath before touching anything!!

As you pray for Mackynlee, please pray for our whole family as we go through this 2nd surgery. I'm not going to sugar coat it; it is so diffucult. The least little thing, much less the big things, upsets me. Tuesday I had to go to an IEP(individualized educational plan) meeting on Mackynlee's behalf. It was all I could do not to cry. I have been in many of these meetings before as the teacher, but it is a totally different feeling being the parent of the child that needs the service. She really doesn't need any services at this time, this is mostly for precautionary measures. This service will help her catch up physically on any developmental delays she might face after surgery.

I also had to meet with my insurance person this week. She saw I had life insurance on two of my three children. She insisted I take it out also on my third child. I told her no. She continued to insist. I then told her I knew my third child would not qualify. She still, after hearing of the heart problem, insisted to try. We were denied. Then she continued to try to get Mackynlee to qualify for different insurances (I think because she felt so bad she had upset me and had not taken my word to begin with). Of course she was denied over and over. This was so hard for me to swallow. I knew she would not qualify, but I guess reality set in once again.

Each day closer to the surgery is more difficult to bear. It's not just the surgery date, but the date we will be separated once again from Shelby and Connor. Shelby is struggling in school this year. It breaks my heart to have to be so far away and not be able to help her each day with her homework. When in a situation like this, it is diffucult on all of the family members.

We are so thankful that Meemaw is going to stay at our house during the week(day and night) with Shelby and Connor. We feel this will provide consistency and stability for the two of them while we are away. They will visit with grand parents on the weekends. This is another blessing from God.

He has blessed us, and continues to bless us daily. We thank Him for giving us our three children. Our heart baby has changed our lives in so many ways. Although it is a difficult road in many ways to travel, we would not want it any other way.

This is a bible verse that I find much comfort in. I try to focus on it in the place of my worrying.

Isiah 41:10
Don't you be afraid for I am with you. Don't be dismayed, for I am your God. I will strengthen you. Yes, I will uphold you with the right hand of my righteousness.

Procedure to begin in 1/2 hour

2009-07-21T09:07:00.000-07:00

They have taken Mackynlee back. Nurse got her iv started on the first stick. That was one of my biggest worries. When I had to leave the room, Mackynlee was still awake, but very relaxed. We will get a phone call when they begin the procedure in about 1/2 hour.

Waiting

2009-07-21T07:12:00.000-07:00

We are at the hospital. Just completed the check in process and was told they would not take Mackynlee back until around 11:00. I don't understand why when our appointment is scheduled for 9:30. Oh well, we will just have to wait. Mackynlee has done great without being able to have her bottle, but is beginning to get a little fussy. Ms. Donna Ratliff, Melanie, and Keli are here with us now. Between all of us, we will take turns doing whatever we have to to occupy Mackynlee until time to go back. Ms. Diane, Mark's mom and her friend Ms. Diane Seago are on there way. Thanks for checking on us and praying for us. I will update again after they take her back. I have no cell service in this area of the hospital. Sorry, I will not be able to text anyone today.

July 21st

2009-07-01T21:56:00.000-07:00

Mackynlee has had two doctor's appointments this week. On Tuesday we saw our pediatrician. He was amazed at how well Mackynlee is doing. He said she looks great and with the help of a few exercises over the past few weeks, her development is right on track!! We can start her on cereal and baby food!!

On Wednesday, we went to the cardiologist in Jackson. This appointment went well also. We are scheduled for a heart cath in Jackson on July 21st. Special thanks to my friend Mel for going with us to Jackson!

Thanks so much for all of your prayers. Continue praying for Mackynlee and all of the other heart babies/ families that need your prayers constantly! Pray for the doctors that will be performing this procedure on Mackynlee and the doctors that will be doing her surgery next month.

Mark will be out of town (at work)on the day of the heart cath. Pray that I will be strong enough to handle this without him, and he will have a peace of mind that day. We're neither too happy about this, but with his work schedule and the doctor's busy schedules, there was no way to schedule it for him to be there.

Heart Cath

2009-06-26T15:32:00.000-07:00

Mackynlee's heart cath has been scheduled for July 21st at UMC. This will more than likely be an overnight stay at the hospital. Begin praying everything will look good. God is in control. We give him the praise, glory, and honor for our precious baby Mackynlee. He has seen us through so much already and will continue to guide us through our next hurdle.