Hope everyone had a good weekend. I hope your Monday has started off good.
I didn't get a chance to write any updates about Lindy's appointments on Thursday. They went pretty good. She went to the Special Infant Care Clinic (SICC - nice name huh?) in the morning. This is where a neonatologist and a neonatology fellow check her out. She weighed 8 pounds 7 ounces and was 19 7/8 inches long. They said she had excellent weight gain. They said she is doing well. The only thing they noticed was when they checked her reflexes in her right leg, the left leg would move and vice versa. This can be a neurological problem but they said it is quite common and that it is something they will just watch. They scheduled her for a few more appointments to follow up on a few more things. They scheduled an echocardiogram for the middle of February to check her lungs. Hopefully after that we can work on getting her off of the oxygen!
After 2 1/2 hours at the SICC appointment we rode over to the hospital. Once again we worked out of the car. Her next appointment was with the ear, nose, and throat doctor at 1:30pm. By the time I ate, pumped, fed her, and changed her it was time for her appointment. He was checking out her paralyzed left vocal chord. He said they don't actually do much for infants with this problem. Again, it's just something they watch. If by the age of 1-2 years she did not have much of a voice, then we would look into doing something. He said he has never had to actually do anything though. I hope Lindy doesn't become the first patient he has to do something with! While we were at the appointment he peeked at her ears. He said she has very small ear drums and as far as he could tell they looked okay. I think it was a little hard to see them. Lindy goes to her follow-up audiology appointment this week so we discussed that. He said if she continues to fail the hearing screen then we will be back to see him. He said they would jump on it very quickly because of her vision problems. He said we don't want her to go very long not hearing well if we don't have a clue what she can see. (Maybe she'll pass her hearing test this week and we won't have to worry about it????)
Today we went back to the hospital and Lindy had a swallow study. This is where they put barium into her bottle and they watch to see how it goes down her throat. We are already thickening her breastmilk but when they watched her eat what we have been giving her, she was aspirating it a lot into her airways. This is not good. We do not want food going into her airways. We tried it at a nectar consistency and she was still aspirating. Finally we tried a honey consistency and she only did it one time and it was hardly any. So instead of getting her off thickener, she now has it over twice as thick as she was getting. We will see how she reacts to this. She will probably have to work harder and feedings will take a lot longer. We had tried about a month ago to make it the same thickness as Will's (whose is already slightly thicker than Lindy's) and she spit up large quantities four out of five times. So now I'm worried about what will happen. I really hope she doesn't start spitting this up. We can't have her aspirating and we can't have her spitting up half bottles. Maybe she won't spit up this time. As soon as she wakes up we will be giving the new bottles a go. Could be interesting. It certaintly does not look like breastmilk anymore. Now it looks like pudding. I'm not joking either! Try sucking pudding out of a bottle and see how you like it!
After her trip to the hospital last week we stopped by the NICU. This was Lindy's first trip back since she has gotten home. It is always fun to hear the nurses rave over your baby! She has changed a lot since they last saw her. Remember she spent her last 3-4 weeks in the Duke NICU. So it has been a couple months since anyone has seen her. We ran by really quick today after her appointment because Lindy's primary nurse wasn't there last week. We caught her today as she was going out the door with another baby to get some kind of scan. She briefly got a look at her which was good.
So the appointments continue. I scheduled four more just this morning. uggggg! This month Will has had 3 appointments and has one more on Thursday. Lindy has had 9 appointments and has three more scheduled before the end of the month. February is shaping up to be the same exact way. March looks pretty quiet so far, I hope it stays that way!
There isn't much news to report from Will's life. He eats, sleeps, poops, and continues to be one of the best babies I have ever seen. He is so darn laid back! He is a happy baby who continually gives us the biggest smiles and little laughs!
Speaking of smiles, Lindy has been smiling a lot the last couple days. I don't know what she is smiling at or about but it is nice to see. Last week was a kind of frustrating week with Lindy. She has not been a happy camper in the evenings. When she is not happy, we are not happy! She was pretty good last night so maybe a new week will bring a new Lindy!
Thanks for all the comments! I love reading them.
Think of Lindy on Wednesday at 1:30pm. She has her repeat hearing test. We believe she can hear things (at least she jumps at loud noises). Let's hope she has more than that though.