Hello! Hello! Hello Amirah Nation!!! After a brief hiatus, I am glad to bring you the latest news about our little fighter! As you are no doubt aware, Amirah has been gaining weight at an extraordinaire rate. She is now 2 pounds, just under 13 ounces. She is starting to really eat like crazy, and her feeds are now 8mls an hour. She is really starting to fill out, and she is really starting to look the way she is supposed to look. She has been gaining weight steadily despite regular poops, and her intestines seem to be doing exactly what they need to be doing. Amirah however, is still having problems.
Amirah is still having a hard time breathing. As much as she is gaining weight, and her systems are functioning, she is still struggling to breath. Early in the week, Amirah was given a red blood cell transfusion, and another round of Lasick was given as well. As you can see in the pictures, she is still on the respirator, and the doctors and nurses continue to monitor her oxygen levels. The talk about her oxygen levels in terms of saturation levels (just skip ahead if I've explained this before), and Amirah needs to be between 85% and 95%. Sadly, for Jo and I, we have learned to live with her constantly dropping under those levels. Most of the time, she manages to come back on her own. Sometimes, the nurse have to help her. Its been frustrating, and quite a bit scary. Its still difficult to watch her drop as low as 60 or 50%, unable to do anything.
The doctor spoke with us briefly today. Amirah essentially has lung disease, primarily from just being so small and immature. This is something that Amirah just has to fight, and out grow. He reassured us that while the de-sats (that is the term the doctors and nurses use to describe when her oxygen levels plummet) are serious and worrisome, the are also completely expected. The doctor explained to us that as she gets older, and bigger, she should began to have less and less episodes. Essentially, what they are dong now is helping Amirah keep her lungs clear of fluid, and make it as easy as possible for her to breath, so her lungs can develop.
Amirah is still fighting like hell, but she is in a difficult stretch right now. The most wonderful feeling in the world was when I finally got to hold my daughter. Its been very difficult not getting to hold her again. We where told by a nurse that it might be best if we don't even touch her, as any disturbance or touch seems to make her de-sat more often then not. The only thing we can do is watch, and wait, and give her our love.
Amirah Nation, Jo and I have received so many messages of love and good will from so many of you, and I want to let each and every one of you know that with out a doubt, it is felt! As scary as things are, Jo and I realize that we are so lucky. With all of Amirah's problems, she is still doing very well. We can feel your love and prays, and all we can say is thank you! Please keep it up for my little girl!
I really want to end on a high note, so I will tell you a brief story. As we left for the hospital this afternoon, we stopped for the mail. I grabbed the mail, and in it was two things. The first, to our relief, was Amirah's insurance card (THANK GOD I work for a company that provides good insurance coverage!). The second item was a bill from the hospital. Essentially, it was a bill for the first three weeks of Amirah's life. That bill, was 67,000 dollars. When I opened the bill, and told Jo, well, I am not sure about Jo, but a VERY cold chill went down my spine. Was that bill the deductible? I though my insurance covered this. I had a brief glimpse of going bankrupt before even to bring Amirah home. Thankfully, rationale thought re asserted itself, and I remembered there was a documentation problem earlier in the week. The first 3 weeks of Amirah's life had in fact cost 67 thousand dollars, or an average of 3,190.50 cents per day! Fortunately, the insurance does cover this, but man, was that a scare!
I feel blessed every day for the things I have in my life, and how crazy things could really be. Thank you Amirah Nation, for staying with us, for providing so much love and energy, and for providing so much support! A big hug and kiss for my two sister in laws, and my mother in law, who in those first few weeks did all the little things so I could focus on my wife and daughter! Another thank you to my best friend for just providing a few words of advice and a hour or two of sanity every few weeks! To the rest of you, thank you for the emails, letters, and little notes. Thank you so much, and I will try to provide a few more regular updates.
Until then, Amirah Nation, keep up the energy, keep up the prayers and keep sending those thoughts of love to our little fighter.
Andy
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