12/2/08 - Game Plan!


Look at that scar! It is looking great :) By the way, this was last night's photo as today she was not this peaceful :)

Aimee and I went to her doctors appointment this morning and they drew some blood. We should get the results tomorrow, but like most of you said, the doctor agreed. He is leaning more towards a thyroid issue than anything else, although he is not counting out anything. All symptoms lead us in that direction, as there is a complication with the thyroid that occurs with woman during and after they giving birth, even up to a year later. So, being that we are 5 months past, it is still possible that her thyroid is acting up. They said that Aimee had hyperthyroidism when she was pregnant, which she did lose unexplained weight, but didn't have the headaches or the fast heartbeat. Now she has a crap load of symptoms and we can only hope and pray they lead to this thyroid issue because it can be fixed with medication. The doctor also thought it could be anemia or a pulmonary embolism.

Kayleigh is still cranky and no one can figure out why. When she sleeps, she sleeps good. But, when she is awake, it is as if something is bugging her that no one can lay a finger on. They gave her two doses of sedation medication just to calm her down today. It helped for the time being, but it certainly can not be a long term fix! Some may stress about a crying baby, but when your little girl is in the hospital and no one has any clue on why she is upset and whether or not this problem could be a big problem or small one, it is downright HEARTBREAKING! Aimee and I left feeling really crappy because you would never leave your crying baby alone at home, right? You would want to hold her and care for her until she calms down. It is not a fun situation for any parent in the NICU to have to deal with that.

We talked with the doctor for a good bit today about our game plan. The plan is to start fortifying the milk so we can get as many calories in Kayleigh as possible. I know you all are probably taking a deep breath right now and say "OH NO, NOT FORTIFIER AGAIN!!!" Well, that is what we said too, but we have no choice. Right now we are fighting against time again. Kayleigh needs to grow much faster than she has been and this is the only way. If it means putting a tube in her digestive track that passes the stomach so she has no choice to digest it, that is what we will do. We need her to grow because her life depends on it.

If Kayleigh's pulmonary pressures become fixed soon, she is too small and her lungs are too weak to survive the episode. The good news is that the pressures are still reactive right now, but no one knows when they will change. All we can hope and pray for is that she grows quick enough to be stronger for the next hypertensive bout. We have known this all along, but today it was more of a reality. If her pressures are fixed and she has one little episode, the Nitric Oxide or Viagra will NOT be able to pull her out it and she will die. We need to pray for growth!

I feel like since the beginning, it has all been about growth. She had to grow to hit a viable weigh to survive outside the womb, she had to grow to be big enough for the doctors to be able to perform her open heart surgery and now she needs to grow to survive her pulmonary pressures. One thing I do know is, she did it twice and she can do it again! Let's all pray that she will grow fast enough to be strong, and stay healthy so she doesn't get any infections before this pulmonary hypertension becomes fixed. We are not sure how long this will take for Kayleigh to grow strong enough to withstand the problem and we don't know how long it will take before the pressure become fixed. It is a waiting game full of stress and faith. I am more than certain that we have both of those.

God Bless,

The Freemans :)

Click Here: What is Heaven Like???

23 comments:

Erica said...

"One thing I do know is, she did it twice and she can do it again!" said The Freemans!!
I agree with you both 100%!!
She can do it!! She always amazes us! I have faith and hope for sweet Kayleigh! God Bless You sweetie!!

Erica
Mommy to 2 boys
1 who was a 31 weeker

Becky said...

Come on Kayleigh, you can do it!!! God bless you all, and we're praying for you down here in Spartanburg :)

Becky

Keri said...

praying for growth, praying for health for Amy and for peace for your whole family...

Keri, Rural NH

Erika said...

Oh My look how sweet little miss looks in that pic :0) Praying hard for Growth and answers for both Kayleigh and Aimee!!

Mel said...

Praying for growth for sweet angel Kayleigh and for her to not be in distress.
Lord, please help this sweet girl grow to capably handle stresses. Please be with this sweet sweet child and her loving parents. In Jesus's name- Amen.
M from OK

Sarah J. said...

Come on Kayleigh baby, you CAN do it...grow grow grow!! Sending prayer, ((hugs)), and if we could send growth we would!

praying for all of you.

Sarah, Chris, Helaina and Ava J.

Sarah&Adam said...

*grow kayleigh grow!*

as always, praying for you!

Anthony's Mommy said...

I have been researching tonight all about preemie hypertension. I'm sure you and Aimee both have been doing this. I found a link of some parents talking and thought it might help you out. There are some dr's names on there. Maybe you could get their opinions on the matter as well. Also there is some medication one of the parents said was "experimental" but it saved their little girl.

http://74.125.45.132/search?q=cache:S1iJTYOC1pUJ:www.inspire.com/groups/preemie/discussion/pulmonary-hypertension-3/+preemie,+hypertension&hl=en&ct=clnk&cd=4&gl=us

I know you guys will go to the end of the earth to help Kayleigh. You are wonderful parents!

Kim

Anonymous said...

I've been following your story since Aimee posted on Babycenter, and i first must say Kayleigh is such an inspiration! God has great plans for that little one! Thank you for sharing this awesome journey that your family has been through.
I have one question...could maybe all Kayleigh's crankiness and irritability be related to something as simple as acid reflux? My 31 weeker had it terribly, and behaved similar to how you are describing Kayleigh. and, maybe that pain is causing her pressures to rise too??

Thanks again, Adam. I will continue to pray for your amazing baby girl and family!!

-Rebecca

Gina said...
This comment has been removed by the author.
Gina said...

Can't do anything but say a prayer for your beautiful little baby. My three kids have been looking at photos on your blog and asking lots of questions. It makes them thankful for all they have. They are praying too.

Anonymous said...

I have always believed that Kayleigh will pull through everything, your story has given me so much inspiration, but there have been a couple times where I cried my eyes out for your struggles, and tonight was one of those nights. I am up with my cranky one month old, trying all I can do to keep him quiet and happy, I was feeling sorry for my sleep deprivation...what you wouldn't give to be in my shoes. It makes me appreciate all that God has blessed me with, including finding Aimee's story on BBC, and following your journey. I am so sorry your heartbreak helps me to see the silver lining, I really try not to "sweat the small stuff"...thanks to Miss Kayleigh! Prayers for growth, and peace for sweet Kayleigh, and both of you. Leslie Johnson, CT

Jennifer said...

Pack on those pounds Kayleigh (actually ounces at this point!). I hope you feel better to Aimee.

Sarah said...

Still praying for you guys! Grow Kayleigh...I know you can do this! The power of prayers has proved stronger than odds in the past! We will just have to keep them coming.

Sarah said...

Still praying for you guys! Grow Kayleigh...I know you can do this! The power of prayers has proved stronger than odds in the past! We will just have to keep them coming.

Anonymous said...

Come on Kayleigh, grow-grow-grow!!!! And her scar looks amazing! I was so shocked to see how good it looks now!
Aimee is always in my prayers but I will send out a few more that the doctor's figure out what is going on and they get her feeling better quickly!
You asked what Heaven is like. Not sure if you really wanted an answer to that. My belief is that Heaven is the most wonderful place there is. There is no pain or suffering. No sadness or hunger. It is so peaceful and wonderful. With that being said, I would prefer to wait to go there for many, many, many years! I pray that Kayleigh will be waiting even more years to go!!!!
With love from Southern NH

Jennifer in NM said...

Grow Kayleigh grow baby girl. Never again in your life are you probably ever going to mutter the words "Gosh I wish I could put on weight!" But you need to right now. Rest and relax and just pack on the weight! I will continue to send many prayers your guys way. Aimee I pray that you are told news today that will ease your fears. As always Adam I pray for you to continue to have the strength needed to endure this rollercoaster. (You both do such a good job.) Adam I have a wonderful husband and I know that when our little guy was in the NICU and I was a complete depressed mess he was spent. He didn't know who to worry about more, me or the baby. So I can only imagine what you are going through seeing as how 2 of your 3 ladies are just miserable right now and you really can't do too much about it except to be there for them. You are an amazing husband. Aimee is a very lucky lady. Aimee, I know that stress can do serious things to your body and on top of it all you had a very very stressful pregnancy and delivery. Womens bodies are amazing and can handle so much, so I pray that even if it is your thyroid, you will recover from it soon. You are so strong to keep going through your personal suffering and still stand by your man and of course Kayleigh. They are absolutely lucky to have you. I will never forget the words my doc told me in the hospital after our little one was born. "In a couple of years maybe even months this will all be a distant memory." And that is what it is going to be. Once Mrs. Kayleigh comes home you will always remember the people that did so much for you, you will remember the ups and downs, you will never forget, BUT it will become a memory.

Sorry for the long post.

With much love and prayers,
Jenn

Stacy said...

DH had hyperthyroidism as well and the treatment that they provide is that they "nuke" it by giving a radioactive dye to kill a portion of it to get it to go hypo. He had this done about 10 years ago, so maybe they have perfected the technique, but from my understanding they can't get it exact.

Untreated hyperthyroidism can lead to a thyroid storm where your heart goes into fibrillation or an uncontrollable rapid heart beat where they have to paddle you back into rhythm. Very very dangerous.

Could very well be the reason why..

Karen - West Babylon NY said...

I just have to say that Kayleigh is absolutely beautiful - she has the most perfect shaped head and her facial features are beautiful - she is going to be one beautiful young lady some day!!!

Praying hard for her to gain some weight fast!!!

aimee gillespie said...

Praying for lots of growth for little Kayleigh...

Aimee Gillespie

Anonymous said...

I was reading the Jensen Quad blog from your blog and they had to get a special lipid formula from Germany for one of their boys to help him grow. It seemed to work. Just a thought...y'all are in my prayers.

Anonymous said...

Maybe she is super sensitive and the tube down her throat is bugging her!

Anonymous said...

I'm praying for your little girl.
I have grave disease. I had the radio active iodine to kill off part of my thyroid now I'm on meds for the rest of my life. I also just had two kids with in the past two years so it can be treated. I'm not sure about the meds for hyperthyriodism but I took meds for hypo when I was pregnant and I am nursing now and taking them. I'm still trying to get mine back to where it should be after having my baby 3 months ago.