When I got to the NICU this morning, it became clear that last night's transfusion was not the answer to all Olivia's struggles. She definitely looked pinker, but she was still a bit groggy and not totally into eating. At first this was pretty devastating to me, as I had been viewing the transfusion as the key to her making a rapid exit and was truly expecting to see a fully energized baby this morning. We tried waiting through a couple more feeds to see if the transfusion would kick in. She did get a bit more energy, the feeds did not really improve - she was pulling away from the bottle - and the breast. Since she had energy and was displaying feeding cues, but then not wanting to eat, this suggested that we had another problem, likely reflux.
Watching our daughter struggle over the past two weeks has been incredibly difficult, and watching the doctors try - or not try - various remedies has been frustrating. While she has definitely made improvement over the past week and a half, Olivia is clearly still not ready to go home, not with the same interest and gusto for eating that her brother displays. One of our favorite fellows has been on call all week, and she came by to talk with us this afternoon. After expressing concern for Mom and Dad's emotional well-being, she asked what she could do to help - just figure out what Olivia needs in order to get home, we replied. No more wait and see, no more passive resting - it's time for an active solution. And by the time Mom left the hospital this afternoon, this is exactly what we got.
In running a series of blood tests, the doctors discovered that even after the transfusion Olivia's hematocrit remained low. This suggests that her crit had dropped to quite a low level since it was tested last weekend and that it is a very good thing we transfused her. It also means that the doctors decided to give her another "full" transfusion tonight. This should really get her up to a robust color and energy level. They also decided to start her on reflux medication. Though I completely appreciate the doctors' minimalist approach, Olivia has been struggling with reflux for a couple weeks and I think she will be much happier - and interested in eating - once it is treated. Finally, the blood work revealed some sort of allergens, which could be reflux or could be the early development of a dairy allergy. To be on the safe side, Mom is going to give up dairy for the next few days to see if that helps things to improve.
All this means that departure tomorrow is out of the running, and Monday is looking more likely than Sunday. This is a total bummer, but I really want to see our daughter happy and feisty, so if that takes another few days of good treatment, that's ok. What has been hardest are the "wait and see" days. When we're moving forward on three different strategies to make her feel better, I can wait for that. This whole experience has also made me more confident in my Mom's intuition and how important it is to advocate for what I believe my children need. Both Mom and Dad have been trying for a couple weeks to get Olivia transfused and her reflux treated, so hopefully these will be the final restorative steps.
Lucas had a long afternoon at the pediatrician's office - mostly just waiting for the doctor, plus a little foot pricking for bloodwork. He has gained a few ounces over the past week, but not as much as the doctors would like. So we will increase the volume of his bottles, which will make him happy, as he's become quite the hungry guy in the past week. We think he looks super vibrant and happy, so we'll just keep feeding and loving him. The one unfortunate piece of news, which we already pretty much knew but the pediatrician confirmed, is that he has another hernia. The surgeon had tried unsuccessfully to look laproscopically during his first surgery, but wasn't able to get a sufficient view. So Lucas will probably need to have this one surgically repaired as well, but we won't know for sure until his follow-up appointment in a week. Poor guy, but we know he'll be equally as much of a rock start as he was the first time. On the bright side, Lucas enjoyed a nice walk with Mom and Dad this morning - he loves snuggling into the Ergo. And this afternoon he got to meet and snuggle with his auntie Melissa.
So our kids continue to get a few more medical interventions than most babies, but at the end of the day, they are doing so well and we are incredibly proud of both of them. We know as the days go on both babies will do more and more on their own, but for now we are happy to have a little help from their doctor friends :)
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