It’s been a few days since our last update. Partly because there was little to report. Partly because we wanted to enjoy the last few days of Josiah’s Christmas “vacation” from work. (“Gee honey, what should we do with your week off?” “I don’t know. How about a trip to the hospital and have our kids seven weeks early?”)
Justine: She’s mostly kept up with the increases in her food’s quantity and nutritional density. She is still spitting up but is decreasing in frequency. She continues to stay off the respiratory support despite her episodes of periodic breathing and low heat rates (yay!). I think she is probably off for good. I just hope she knows we expect her to breathe without relapse once she is home away from the doctors!
Jayce: It’s been good news day after day for Jayce as well. He was taken off his IV yesterday! He still gets poked with needles for tests and blood draw, but the persistent needle is gone for both kids. SO thankful.
He is approaching the end of his respiratory support as well. Doctors like to see a weight of 1500 grams before removing it; he gained 35 grams overnight and is now 1495. Unlike his sister, he has had practically zero breathing incidents.
His weight gain is visible, sometimes from day to day. Although he has a long way to go before he looks like a regular baby, it’s so much easier for me to see him now that I know the needle is gone and his body is a little fuller.
Once Jayce gets off the respiratory equipment, both kids are just focused on growing and taking in food. It’s too early to know our homecoming date. Every day is progress!
Parents: We are doing well. Josiah went back to work today, electing to save paternity leave until one twin comes home. We had our hospital visit routine figured out while he was on vacation. Now it’s time to figure out a new routine around work.
This was my first all-day stint at the NICU alone. I won’t be here all day every day, but I am trying to get here several times a week. (I’m not driving yet, so shout-out to the people helping with morning transportation.) Our plan is to visit every evening after work, with my all-day visits thrown in as bonus time.
We are so eager to bring the kids home. However, being here all day with the monitors and alarms has reminded me we don’t want to bring them back until we know they are okay. I can easily see getting consumed with the worry that something will happen away from the safety net of medical professionals. I am thankful God is aware of our situation and will be with us not only in the NICU but also at home.
Our kids are quite healthy by NICU standards. Being here these last ten days has also made me think about the other families whose situation is more extreme. We heard of a set of 28 week twins arriving shortly after ours. I’m sure they’re not the most extreme the staff has ever seen, nor will they be the last. When we pray for our kids, we also pray for God to work in the lives of the other families; to strengthen their kids and bring them home; to use this as a situation to show Himself to the families who don’t know Him.
Seeing small bodies with IVs and tubes is a reminder to me that this world is not as God intended for it to be. Even infants experience the brokenness right away when they are born with health complications in bodies originally meant to be perfect. It also reminds me that as much as I’ve been focused on seeing them achieve basic functionality like breathing, eating, and growing, until they establish a personal relationship with Christ, they face the greatest danger of their lives by being unregenerate sinners. It’s a sobering thought that despite all our efforts to protect them as parents, the most important thing for us to do is point them to Christ.
We continue to appreciate all your prayers and support. We’ve left the early days of this adventure behind. We move into a more “regular” routine of work & NICU…until the joyous day when at least one twin comes home and we start learning how to be parents 24/7!
(And we think we’re getting little sleep now…)
P.S. To local friends & family, we will have a great need for help once Justine comes home and Jayce remains at NICU. We can’t take her with us when we go to see him, so if you want to babysit her at our house, let me know!