After we transferred care to Advocate Christ we began conversations about when to deliver. We wanted to get as close to forty weeks to give Lucy time to grow.
Lucy says: no way, I'm ready now. Three pounds is big enough.
And we delivered three weeks early.
Upon arrival, we got all settled in the NICU. As an a typical hypoplast baby, she was calm keeping her stats very steady. Surgery was scheduled about three weeks out, March 3rd.
Lucy says: It's March 1st, I'm ready now.
And for the first time we had to give her morphine to settle her
Recovery went well and she was progressing. She was off most of her medication and off oxygen. We started talking about sending her back to the NICU to grow some more.
Lucy says: I like my PSHU nurses. I like my private room. Try it, I dare you.
And she coded during a routine thoracic line removal.
Her recovery from the code was quick and we learned that she would not come home between the Hybrid and the Norwood. Once stable we were targeting three weeks out....you know, more time to grow.
Lucy says: You guys are nuts, I'm not wasting time in the hospital to grow.
And she cried herself into a code, pushing her Norwood
surgery up two weeks.
Flash forward to this week. We are finishing up our fifth week at home and everything has been going well. However, little things just changed a bit. Her sleeping patterns at night changed. She seems a little more fussy during the day. She was easy to calm, but would quickly cry again. These bouts lasted longer than in the previous weeks. So Friday morning we waited for Grandpa and headed down for our appointment, not really thinking about the small changes we were seeing. While we were getting her stats, she got fussy again. She also got really hot and clammy. Angela asked about it and I said the hot/clammy skin had happened more this week than in the past, but Lucy settled and even fell asleep during her echo. After the echo Dr. Ross and Angela came in and said, "We're going to admit Lucy". This is mostly a precaution but the clammy skin and increase in fussiness may be a sign that the Glenn is closer than we planned. They also saw in her echo that the squeeze of her right ventricle had decreased mildly. We had been targeting a weight of 4.5 kilograms for her heart cath. Aiming to schedule it at the end of July and surgery for August.
Lucy says: I'm 4.2 kilos, that's big enough. Let's get this show on the road.
And a Friday morning appointment turned into a weekend stay
at the hospital.
Friday afternoon we walked up to many familiar faces. Although Mike and I had not planned this, if there is a concern we want her to be in the safest place possible. Once settled into her room, she got an IV and they started Milrinone to help with her pumping. Her heart cath is now scheduled for Tuesday. After the results are reviewed, we'll start talking about dates for the next surgery. I think the hardest part about this stint in the hospital is that it was unplanned. It was so so hard to leave her. But maybe this will help us plan for the next stay, we'll now get a feeling of what it's like to return and hopefully be somewhat prepared for surgery.
All along Lucy has been telling us, I got this. Now we just have to trust that God's got her back. We have been asking for specific prayers, but after Friday I think prayers for peace around the entire process and some strength for the unexpected and unplanned would be most helpful as we venture down the road to the next surgery.
Our supergirl!!
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