By now, many of you have read my status on Facebook. Hope woke up for a little bit this morning. This was unexpected for me, so when I arrived, as usual, I asked the nurse, Stephanie, how she was, and then I noticed immediately her eyes were open, and I instantly lost it. As she heard my voice, I watched her eyes open wider and start to look around the room, searching for me. I went to her bedside, and started talking to her directly and she was able to half-consciously look at me. Then she smacked her little lips, just as she was doing when she went to sleep a week ago. Yep, she is still hungry and she knows it. I see this as a good sign, and it won't be long until they start to get some food in her.
The other big milestone for the day was that the surgeon finally closed up her chest. This does not come without risks, so I have been nervous about it, and anxious for it to be over. There's risk of infection, more swelling, destabilization, etc. We had to sign a consent, though it seems silly because it was not like we would leave her open. Talking to the Stephanie pre-procedure, she warned me that even though they were closing her chest, there could still be complications. Sometimes, when they are as little as Hope is, they can only close the chest a little bit, or sometimes they have to re-open it. Sometimes they need a lot of support - pacemakers, defibrillators, blood, etc. I really like this nurse - she was her nurse immediately post-op last week, and she is brutally honest, which I appreciate. It makes good news all the sweeter. So when I left there at 1, kissed my sweet baby on the forehead, not only did I know that she was in good hands, but I also knew that I was well-prepared if it didn't go smoothly. While they were closing her up, I went for a run because it was the best thing besides having a drink to keep me occupied. Then I had lunch in the garden and waited for Chris to arrive and for the phone to ring. The phone rang shortly after Chris texted to say he was in the area. It was Stephanie and the news was good. Hope rocked the procedure. They closed her chest and she needed almost no support. They removed a couple more tubes. She was resting comfortably and was stable. We went up a few minutes later and she looked so peaceful. Her numbers were good and it was obvious that Stephanie was not worried. She left us to ourselves and didn't hover. In the past 6 days, we have had very little alone time with our baby as she required a lot of professional care, so this was just another sign as to how well she was doing. Stephanie did not mention the complications she had prepared me for earlier in the day, but instead talked of the recovery process - When the tubes would be removed, when we'd get her off the ventilator, how they would try to feed her my milk through the feeding tube (possibly even tonight), and how they would probably wake her back up tonight and start to work on keeping her awake. The chaplain passed by and said a prayer of recovery with us. I left there breathing easier than I have in 10 days.
Resting comfortably post chest-closure. Her eyes are not really open, they're just a little swollen still, but this swelling is nothing compared to a few days ago.
Are we out of the woods? Probably not quite yet, but I think we're on our way. Each hour that passes, we're a little closer. The 6 days she laid in the CICU unconscious with her chest open were the longest of my life. I had to fight to keep my mind from focusing on the worst-case scenario, and I found it a struggle to not see big improvement from day-to-day. It was discouraging for me. But I never got that sense from her caregivers. They remained positive even when the progress was small. There was always forward progress, never backward, which is a really good thing. It was just slow. I think Dr Freidman would have liked for it to be going a little quicker, but he assured me that she was little and this was the problem with doing such a big surgery on a little baby and lamented again as to how he wished we could have waited. Most of all, over the last 6 days, I have tried to stay busy doing other things. My biggest struggle was feeling like I had a purpose. Chris went back to work, but I am on maternity leave, with no baby at home to care for. It feels sort of like summer vacation, but the days are short and the weather isn't as nice, and none of my other teacher friends are off. Sunday, with its extra hour, something I usually relish in, seemed interminable.
I am really grateful to have had such a positive day. I know it does not always work out and my heart weighs heavily as I have been following another heart baby who is currently losing his battle. I thank my lucky stars because I realize how blessed we are. We waited a long time for this little girl and she has brought so much hope to our world, even when hope was lost. We can't wait to bring her home and introduce her to all of those who already love her so much.
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