Upon asking the nurse how she is doing, I've been getting a similar response each day - she's doing ok.never good, never great, just ok. Each time the nurse has reiterated how sick our baby is, and each time I have to remember to take that with a grain of salt. I know she's sick, no doubt about that, but I have to remember - how sick is she for her situation? Is how sick she is normal or is she struggling? So each day I have asked them to put it in perspective for me. Is it normal for her size, her condition, the surgery she just had, etc.? When you see your baby that sick and not making perceptible progress, it is easy to get caught up in it and be disappointed. But each time I asked those questions, the reply was always that she was doing what she needed to do and that nothing was out of the ordinary. Dr Pigula, her surgeon, has been satisfied with what he's seen. He's never expressed any surprise. I have never felt a frenzy around her bedside, but instead, I have been met with calm, capable, and skilled nurses, gently tweaking the doses of meds she was receiving, as well as the machines regulating different things. It has been a process of fine tuning, getting her heart and body adjusted to the new blood flow.
When her cardiologist came by to see me yesterday afternoon, he seemed pleased. It is much easier to read that in someone you have gotten to know. In her two weeks at Children's, we have met with her cardiologist on about 10 of those days, and sometimes multiple times in a day. He re-explained everything the nurses had explained to me, and said it really well. He explained that they never know how babies will respond to this surgery - you could take 20 babies, all the same age, weight, and use the same surgeon, and each baby would recover at a different rate. So it was hard to say what is normal. The good news, which we need to focus on, is that she has not made any backwards steps. By the time I left Children's yesterday I felt good. Apparently, she had not had a great night or morning, but by the time I arrived in the afternoon, she was making significant progress. The most significant improvement was that she was peeing. Seems like such a little thing, but in order for the swelling to come down, this was huge. Her cardiologist explained to me that his as probably a sign that she was turning the corner.
So this morning when we got there and asked the nurse how she was, we were met with a "she's doing great and had a great night", it was clear that Dr Freidman had been right, she was turning the corner. They are starting to wean her off of some meds, her heartrate and blood pressure have mostly regulated, and they took her off the temperature regulator. The swelling is beginning to come down and her color is starting to look better. She is comfortable and relaxed (but still very heavily sedated). The goal for the day was to take her off the paralytics and possibly reintroduce breast milk via a feeding tube, though we left before either of those things happened. Being that she hasn't eaten in a week, this made me so very happy. They are slowly bringing her back. The plan is still to wait until Monday to close her up and they won't start to let her wake up until they close her up. It has been a long 3 days of not being able to snuggle with our baby or look in her deep, soulful eyes, so we are impatient to bring her back to life, but understand it can't be rushed. It will likely be another 3 days until we get to hold her again.
We have taken the last few days as a chance to step back and do some things for us. Appropriate it happened over a weekend. This is really the first weekend I've had since Columbus Day weekend. Since I left work two weeks ago, I have not had a day off - it's been full time at the hospital. Chris went back to work on Thursday and Friday. I went to the hospital, but only for an hour or so. We've gone out a few times and seen friends. I went for a run. Chris went to Krav. I got a haircut.
I went to my own Drs appt and found out the meds were working and my BP was coming back down. It's been a somewhat refreshing couple of days.
Yesterday was Halloween. I was bummed that Hope had been born and we couldn't celebrate. She didn't get to wear her little "My First Halloween" outfit. But the Child Life team brought her a ballon, a new sign, and some cute Halloween socks.
Other than Hope's improvements, today was also a good day because we met her pediatrician, Dr McKeen, who came to the hospital on a courtesy call. This was the first time we met her and I have been so impressed with everything she's done. She has called to check in on us a few times, including Wednesday, to wish Hope luck in surgery. Yesterday when I arrived to see Hope, her pediatrician was on the phone with her nurse. She is on top of things and is also caring and compassionate, when we met her, she gave us each a big hug. I feel like I've known her forever and can't imagine Hope seeing anyone else.
Overall things are on the upswing. We have turned the corner and progress has become more visible. I expect the next few days will show even more rapid improvement. We will update when we can, but please know our priority is Hope and finding time for ourselves. We thank each and everyone once again for your prayers and support. We have been so touched by the outpouring of love she has received.
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