Sunday, June 28, 2009

What a week!

Man, it's been a strange and long week. There is much to tell, so I suppose I'll start at the beginning, which happens to fall on Tuesday of last week. It was 8:30 in the AM, and the phone rang. I happened to be up, because I'd just finished feeding Keely. Answered the phone. It's Keely's pediatrician's nurse, Reyna, who proceeds to tell me that Keely's PKU test she had in the hospital right after birth came back abnormal for thyroid. They want additional testing to make sure it was done right. After freaking out the whole way to the doctor's office, I got to visit with the doc at around 11:00. Dr. Stripling talked with me for a little bit, explaining that the test shows that her thyroid is not making enough of the hormone it produces. In short, her pituitary gland is telling the thyroid to produce more of the hormone, so it is working in overdrive to fill the demand. If it kept up at the pace it was going, her thyroid would eventually burn out completely. Think of it as diabetes but with an entirely different organ. He did manage to calm my nerves by saying that since they caught this early, she should be completely fine. It would mean a few visits to an endocrinologist and medication. Next, I took her down to the lab for the additional testing. I had to watch them stick my baby again; this time was one of the worst. They drew a full vial of blood from her arm. She was screaming, and I felt helpless. I wanted to cry with her. Poor, sweet baby. Mean lady sticking her with a needle in the arm. I mean, they'd pricked her heel twice within the week. Third time is not a charm. After waiting a day and a half for the results, Keely was diagnosed with Congenital Hypothryoidism. She's okay, really, but it could have ended up rather unfortunately, if they hadn't caught this condition at the beginning. So, this brings us to Wednesday. We got her prescription from the pharmacy the night before. The pharmacist recommended we wait until morning to give it to her. It came in a tablet form that had to be dissolved in 5 mL of H2O. Carl crushed the tablet, combined it with water, and tried to give it to her while I held her hands and head. She hated it! I mean, really hated it. I don't think babies like water anyway, but she really didn't like it with a semi-dissolved tablet in it. It took 10 minutes to get her to finish it. Carl and I agreed that we had to find another way to get her to take this stuff.

Luckily, Keely's 2 week appointment was scheduled for the following day. Carl took off work and came with me. The appointment was at 1:45, but it was literally 3:30 before we saw anyone. Carl's pretty impatient. He did not do well with the wait. It turns out that a different patient had appendicitis, so the situation could not be helped. The good points of the visit: 1. Keely now weighs 7 lbs. 2 oz., meaning that she has surpassed her birth weight. 2. Keely has grown 1/2 an inch since birth. 3. We found a new way to burp her that actually works most of the time. 4. The nurse hunted down a pharmacy that would compound the tablets into liquid form and mix them with grape flavoring. Keely actually likes this. 5. Keely's muscle tone is very good. Dr. Stripling said she is very strong already. The bad points of the visit: 1. They had to do another PKU test, where they pricked Keely's heel and filled those 6 circles. She cried pretty hard. 2. We didn't get out of there until nearly 4:30. Talk about a long wait! Imagine enduring that wait with a husband who needs to get back to work and a baby that had to wait an additional 45 minutes to eat. It was a long day, to say the least. At any rate, we did get to ask our questions and get some answers about this condition. Keely actually got a version of this medicine that she takes well, only I'm afraid it will take her body time to adjust to it. She's had an upset stomach for the past three days, since we started the medicine. It might not be a direct link, but I'm thinking it is. So, now we are at Friday. We had to take Keely to the hospital (doctor's orders) to get a thyroid scan. The procedure resembled an MRI, I guess. They wanted to figure out if her thyroid was fully developed and where it was exactly. With congential hypothryoidism, her thyroid either did not develop fully or developed in the wrong place. The purpose of the scan was to tell which it was. Our appointment was scheduled for 11:00, so we checked in around 10:30. They had to give her an IV in the hand in order to give her a minute dosage of radiation so they could see what was going on and some saline. Poor Keely had to get stuck yet again! It was horrible. Now, I have grown somewhat accustomed to have blood drawn due to all of my fertility treatments and being pregnant. But, I hated watching Keely have to go through all of it. Of course, she cried when they stuck her. I wanted to cry, too. The good points of this visit: 1. We'll get results and know where we go from here. We would really like to know what the next step is. 2. The pictures taken will go to the endocrinologist, and we'll get an appointment set up with him. The bad points: 1. We did not get out of there until after 2:00. Carl had to miss even more work, which he understandably complained a lot about. 2. We had to hold Keely completely still, while at an awkward angle to do so, during the photo session. Keely was not happy, but she finally fell asleep (and so did Carl and me) during the last shot. 3. We won't know results until Tuesday. Friday was a long day, too, to say the least.

So, yesterday, we gave Keely her medicine in the AM. She cried for about half of the day, acting like she just felt off. Carl and I were tired, too, but we mostly felt sorry for her. We would get her to calm down and doze off, but she would wake up as soon as we put her down, crying and crying. We held her most of the day, because of this. Even still, she was not very happy. It wasn't until we took her for a car ride and stroll around the mall that she slept for an extended amount of time. When we got home and took her out of the carrier, though, she woke up again and cried some more. She was having a rough time, and we didn't know what to do about it. I finally called my mom around 9:00 PM. By the time I got off the phone, though, Carl had her settled down, I fed her, and she slept, meaning that I could sleep. We slept on the couch until her next feeding at 1:00 ish. Carl went on to bed, while I fed her. Keely slept until her next feeding at 4:00 ish. She was awake after that feeding, so I didn't think she would let me get some sleep. I was wrong, though. I put her in her swing, and she fell asleep. She didn't wake up until 8:30. She's really a good baby. She just isn't used to all of this medicine and got worn out with the doctor's visits and long waits. Poor, sweet baby. It was as tough on Carl and me, if not tougher, as it was on her, though. So, for those of you who are praying people, send one up to the big man on Keely's behalf. Pray that she'll overcome this condition or at least adjust to the medicine. Faith moves mountains, and I am confident Keely will be just fine. Even still, a few more prayers for her would be greatly appreciated. Enjoy the pics.








1 comment:

Anonymous said...

Wow, I'm tired just from reading about all the waiting and stuff y'all had to do. Hope this week will be better.