Now that I have a little time off work, I’m getting around to writing for this blog. I have good intentions everyday but I’m always too tired to write when I actually get a chance. These chances usually come in the middle of the night or early in the morning before the boys wake up. I hope you can forgive my spelling errors and the rambling nature of this blog. I can at least use the excuse of sleep depravation.
Brandon:
Overall, Brandon has done really well. His oxygen needs have continued to improve (he needs less and less). The weaning of his nitric oxide went really well. He certainly seems to be past his infection and has recovered well from the surgery. The next big step is to get him eating on his own. The doctors have said that as soon as he is off his nitric oxide and stable they can begin to consider transporting him back to the hospital near us. The trick is that he will have to be doing well and this stability might mean that he is close to coming home. We will have to convince our insurance to pay for a back transport. I anticipate that this may not be easy to do. If he is doing really well they might feel he is to close to going home and even push to send him home while he is still eating through a tube and not back transport him.
Brandon’s nursing has been off and on. He has done well a couple of times and poorly a couple of times. We knew that we should expect this but it still feels discouraging. Yesterday the occupational therapist (the person who works with babies to get them to nurse and take a bottle) suggested that we start heavily into bottle-feeding. This is one area where the two hospitals differ greatly. UVRMC has a procedure they follow that focuses on breast-feeding when possible. At Primary Children’s Hospital they seem to do the opposite and focus on bottle feedings. It makes sense when you think about the type of problems that they deal with at each different hospital. However, there are many reasons why it is really important for Brandon to nurse. After talking it over with the nurses, Amy decided that the best thing for Brandon would be to move up to nursing him multiple times in a one day. We hope it will be for a short period but, if this is the big thing that will help get Brandon home, it will be worth it. She nursed him twice for the first time yesterday. It is good I have some time off so I can help out over the next couple of days. We might even try and stay ner the hospital this weekend. So much for a relaxed Thanksgiving weekend.
Yesterday they took Brandon completely off the nitric oxide and unfortunately his oxygen needs increased quite a bit. Last night they put him back on the smallest amount and his needs seemed to have dropped. We will have to see what the doctors say today. They intentionally wean babies slowly because getting babies off of the last little bit can be hard. I hope this just means he needs a couple of days for Brandon to adjust on very low amounts and then they can take him off completely without any side effects.
Katelyn
Katelyn is also doing well. One of our big challenges with Katelyn is to get her to grow faster. Also, in about the last two weeks she has decided that she doesn’t like bottles. We had been very careful to make sure we bottle fed her well, as per the instructions from the hospital. One of the purposes of the careful bottle feedings techniques was to make sure she didn’t have a bad experience. While she never was a stellar bottle feeder she seemed to take a turn for the worse. We even went back to the occupational therapist at UVRMC and she said we were doing everything right. We have been trying her suggestions with little luck. We have more ideas and we are going to try different bottles and nipples. She really needs to take a bottle, especially with Brandon nursing twice a day. The bottle-feeding responsibility has fallen to and I wont give up!
We are still concerned about her lip. We are going to take her in to the specialist at Primary Children’s in a couple of days. It will be nice to get another opinion and hopefully be reassured that we can eventually make sure her lip heals completely. She still isn’t doing well enough to be taken off the oxygen. We will test her again next week.
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