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

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

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

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

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!!

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?

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

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.