Sunley had a great day today. Since my last blog post, a few major things have happened:
1. Blood pressure has stabilized.
2. She is completely off sedation meds, and only receiving Hycet to control her pain.
3. She has been extubated (with a very brief lung collapse during extubation), has graduated from CPAP to nasal cannula on high-flow at 6 liters, and is now on the cannula at only .5L!
4. She is not on any cardiac drugs, very VERY slowly increased her O2 sats to 85, but now that we are weaning her oxygen support, those are hanging out around 78-80 again — hopefully they will increase just a bit.
5. She ate from a bottle twice. And Momma got to change her diaper :) Unfortunately, they weren’t happy with the feeds and yesterday while I stepped out for breakfast, I missed the OT rounds. When I came back, the nurse was putting her feeding tube in. It was absolutely horrible. Sunley was SCREAMING and it was beyond traumatic to see her like that and not be able to help. I think doing that without sedation is normal — maybe there’s a risk involved if you do it with sedation? I totally agree that she needed a feeding tube — But what made me unhappy was that my nurse didn’t inform me of that decision. There were many instances yesterday in which major changes were made without the nurse informing me. For example: She was unplugged from the pacemaker!! But I didn't find out until shift change about 5 hours later. Even when I tried to ask the right questions, I just felt like I wasn’t being informed fully. She never made any mistakes in Sunley’s care and she was very sweet, but I just had a “mom-gut” feeling. It was sooooo uncomfortable but at the end of the day, I talked to the charge nurse and requested a different nurse for the following day. She was very understanding, and today we have absolutely LOVED our nurse, Abraham. He explains literally everything that he does with Sunley. I so appreciate that because this is my new life now, and I need to understand what’s going on.
6. Sunley’s Bradycardia has improved too (hence the unplugging pacemaker)!! She is now around 110-120 while sleeping and sometimes even 145 when awake!!! Yay!!!!!
Once she gets her chest tube out and her pacemaker wires removed, we will graduate to a different unit — Either NICU EPod or Floor 15. Epod is like an “in-between step” between CVICU and 15. Floor 15 is where you go right before you go home.
Today, I got to HOLD HER!!!! And Hadelyn and Ruger were able to see her! Happy all around.
Derek and I are feeling so loved and supported. I told him the day of her surgery that while I obviously would give ANYTHING for her to not be going through this, I actually feel a little grateful for the experience as a whole, because it’s made me SO much more dependent on prayer. Praying has become my first reflex for everything, as it should have always been. I hope I never lose this reflex — it comes so easily when you’re in such a dire situation, and becomes much harder when life is normal and full of a million petty distractions. Don’t get me wrong — I also would give ANYTHING to fix this for Sunley. Just trying to see the silver lining.
We have been getting SO. MUCH. LOVE from the church all across the world, and that’s pretty amazing to me. We’ve had cards/messages from just about every corner of the US, Australia, South Korea, and the list goes on. I wish I had an exhaustive list of everyone praying for her, but there is no telling! I have had people tell me (while attending churches in places that I’ve never visited) that they heard Sunley’s name mentioned in prayer or in sermons. What’s amazing is that while we are so thankful and so humbled by all of the support — we aren’t the least bit surprised. That’s just the way God designed the church to be, and it’s exactly the church we’ve always known. I’ll never underestimate again the encouragement brought from simply saying “We are praying for you.” So many people are asking us what they can do, and honestly, that’s been the best thing for us. Because when you believe in prayer and you see it WORKING, you feel just a little sense of relief. We also have several people who have come and stayed with us, watched our kids, taken our kids on outings, brought food, given us gift cards, ordered us pizza from out of state, and more more more. We are going through something horrible in seeing our baby suffer, but we keep finding ourselves saying “We are SO blessed,” and that is because of the support of the church, as well as many friends, “facebook friends,” and even a few complete strangers.
I feel a million completely contradicting emotions every day. Any time I start to feel a sense of relief, I also remember that she has at least 2 more open heart surgeries to get through. And when those happen, her O2 sats, heart rhythm, EVERYTHING has to start back at square one and readjust. And of course, even if her Glenn and Fontan go perfectly, she has no guarantee that her heart will “last.” I’m hesitant to talk about the darker sides of her condition, because I desperately don’t want people (and especially kids her age) treating her like she’s fragile. I’ve battled with how much to share here and on social media, which pictures to post, etc, because I don’t know how she will feel about all of that being on display when she’s older. I don’t want her heart condition to be the first thing people know about her. I know what it feels like for people to judge you before they really know you, because of my celebrity days on ESPN, One Tree Hill, and Extreme Makeover Home Edition ;)
Our goals for this weekend include weaning off the nasal cannula, removing her chest tube, removing her pacing wires, and MOVING to a less critical care unit! Praising God with every breath for such a smooth recovery! I’d like to think that God is keeping a list for me in heaven of all the prayers that have been sent up for her. And I plan on reading every one.