Christmas Eve was hard. It started with waking from a glorious sleep, a good breakfast of real food, and a morning visit to the kids with Mom, who gave Josiah a night off from hospital sleep with me to rest in his own bed at home.
It was great to have a night without heart monitors! Also great: sleeping on my back, less “me” to move around, and no more stabbing rib pain as Jayce explores and shoves things out of his way! It does feel strangely foreign to be a body of one again instead of three.
Today has also had lots of ups and downs in parent emotions. How crazy everything feels in the days of postpartum!
When we visited the kids, we were too late to spend time with Jayce. He had just been serviced, and because he is so little, it’s important to avoid interrupting his deep sleep. I felt guilty as I sat with Justine. It was day two of our kids’ lives and I had not held Jayce once. (Josiah did last night.)
Welcome to Twin Parenting Dilemma #1: Feeling guilty because there are two of them and only one of you. The feelings are intensified when they are the same age….and they’re lying in a NICU bed!
Once the crying door was open for the day, it was difficult to close again. My pain from the c-section was definitely more pronounced than the day of the surgery. Also, I’m sure my hormones are all over the place. (Still highly recommend the c-section, though. You are going to hurt and be a mess after birth regardless what method you use. At least I didn’t have waves of stress and pain for 12 hours as the pre-show!)
There are other things making us cry. We finally heard back from the echo that was done on Jayce immediately after birth. Unfortunately, they were still not able to see the area of concern clearly. We have another echo schedule for Thursday.
They are trying to decide if a portion of his aorta is so narrow it requires surgery. If the answer is yes, this is surgery that needs to happen immediately. As soon as he is big enough to tolerate it. He would be moved to Nationwide Children’s to be kept alive until he’s ready. If he doesn’t need surgery, he will stay here and continue to grow.
The heart concerns had not upset me before because, frankly, I’m used to them. These are issues Dad and Jonathan had. It was so long ago and they are many years into their recovery, the thought of Jayce being in the same situation didn’t bother me at first.
But now, having held Jayce for the first time and seeing his size, it’s not so easy to dismiss. This is a common surgery and I have firsthand examples of how well it can go…but it’s hard to see past his size.
I think we also understand how long it could be until this new family of four actually lives together in their home. Standard NICU advice is that the kids will come home on their birthdate….which is just under 50 days from when they were born on Sunday.
50 days.
50 days of driving to the NICU every day. Doing visits around wires and tubes and IVs. No visitors except for us and the grandparents. No friends who have supported us and are excited to see the kids. No aunts and uncles. No great-grandparents. The kids have their whole lives and I know our friends and family aren’t going anywhere, but this isn’t the start I had in mind.
Christmas Day was better than Christmas Eve. We got some good sleep and spent time with both sides of the family. Our Christmas morning visit to the Trumpower household gave the day a sense of normalcy.
Ultimately, Christmas ended with an evening trip to the NICU. We got to participate in the basic care for the kids, including a diaper change and taking basic growth measurements. We held the kids for a long while as the nurse gave us highlights on their progress.
Both truly are doing well. Jayce is breathing well enough they were able to turn down his support to a lower setting. Both are still on respiration support but they breathe the same air the rest of us do. They need no extra oxygen.
Justine has done well with feeding(via a tube leading to her tummy, not a bottle yet. They up her dosage continually. Once her stomach can handle a full feeding, we can get rid of some IVs and feed by bottle! Could see that happen in a few days.Jayce is also expanding his capacity to hold food in his stomach, but because he’s smaller, he’s starting further behind his sister.
The nurse has not seen troubling heart problems in Jayce (low heart rate, uneven blood pressure, etc.).
We returned to our after the visit and we both just cried for what felt like forever. Maybe that will every time we visit. Maybe it’s just us getting used to things. I have no doubt the kids are well cared for. I have no doubt they will continue to get better. It’s just so hard to see them—my kids, but how could they be my kids, it just doesn’t feel real?—in this state.
We have the opportunity to help with baths tomorrow (Wednesday). Looking forward to finding ways to be involved in their routine.