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.

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!!

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

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

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

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

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.