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 :)

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