MRI

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

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

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

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

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

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

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.