Sending this update from our second home at Helen Devos Children’s Hospital. Gone are the days with spare time to think and write, so this will be brief and from the hip.
Liam’s birth started at Celebration Cinema. We wanted a little time together on Saturday with our induction the coming Thursday, but the surround sound from Dune 2 woke Liam up in the womb and said it’s time to get started. Labor went well, we were concerned going in about Liam’s ability to withstand contractions and delivery, but he hung in there and went through it all unfazed. What precious moments when we got to see his beautiful face for the first time as he got set on mama’s chest. From there we were whisked away to the NICU with Liam on a CPAP for breathing, because since delivery he had labored breathing and short breaths. We were grateful to be there, still in awe of our little guy being here with us.
Days 1-3 in the NICU were really beautiful, filled with family including his siblings coming through to meet Liam, lots of cuddle time, and celebrating lots of little wins that he was showing us as he kept growing and making little progresses as the lab tests, x-rays, and examinations were coming back with mostly positive news. Little victories in the context of his overall outlook, but little victories deserve celebration too. We felt so much joy and so grateful with each minute to be holding him. Mackenzie was still admitted in postpartum because of preeclampsia risk through the first 3 days which was frustrating to be going back and forth from NICU to her room, but it was fortunate also to have a place to keep our things and get some rest when possible. Starting day 2 for a few days we got to have a NICU nurse that has been a huge blessing to us since the diagnosis, one of several small blessings that has brought encouragement. Those stories are for another time. Day 3 brought us from the bay NICU area with several babies in a room to a private room in another area, which has been fantastic to have the privacy and space within. Mackenzie also got discharged from postpartum which was great not to have to go back and forth from NICU to postpartum anymore.
Day 4 really felt defeating, as the big breathing test to get off CPAP, which the test itself was a product of the prior days’ success, failed quickly and decisively. Quickly we forgot the celebration that we even had him with us, and were brought back to the harsh reality that we will face at some point. It’s one thing to know it’s coming, and even get comfortable talking about it, but when it confronts you face to face, you understand there’s no way to prepare. Some other setbacks that day just contributed to the defeated nature of the day. We recognized that in the madness of the week how much we had neglected to be centered on the Lord, so our faith was in outcomes. When your faith is in outcomes, fear is next and the battle is lost. That night we were able to regroup and try to re-center on the Lord, who has joy for us in the moment. Joy that Liam is with us, and our time should be spent in that joy rather than fear that comes from the enemy.
Day 5 brought fresh eyes to return to the celebration we get to have with our son. We got have good time just us and him, go back and have some time with our other kiddos, and bring them back up for time with Liam as a whole family and a little pit stop with the therapy dogs at the hospital that day.
Day 6 they tried him off CPAP again after a couple good days on it, and we got to spend most of the day with him not having his mask on, which was so fun and sweet to see his beautiful little face unobstructed. He did have a few episodes that required him early the next morning to go back on the CPAP, but we will keep trying to see if he can get his breathing under control on his own eventually. It’s probably a longshot to not need some breathing support, but we aren’t in the business of putting limits on Liam. Another really great day for us.
Day 7 took a tough turn when the headaches and blood pressure that had plagued Mackenzie in the days following delivery came back in full force, with a migraine she had never felt the severity of before. She went down to the ER to be cautious about possible ecclampsia, and was treated there for the migraine and blood pressure, but preecclampsia was ruled out thankfully. It was an unneeded and frustrating distraction. It’s been hard enough trying to spend time with and care for Liam the best we can, while also getting out to see our other 2 kids who have been in grandparents’ care since delivery, and adding in that migraine and ER visit essentially stops either from happening.
Day 8 brings us to today (counting last Sunday, his birthday as 1) where we are sitting in his room enjoying snuggles, now without the IV that he had been getting food on, and again trying without the CPAP. Mackenzie’s migraine is under control and the kids are getting more familiar with Liam and being here in the NICU with him. We are soaking it in. It’s likely we will be here for quite a while longer before a discharge, with big decisions looming. There will be a day that we have to make really hard calls on a number of things that I wish we never had to, but that day is not today. Today we get to snuggle up with Grandpa Liam (born with male pattern baldness as his hairstyle of choice) and let him keep teaching us.
We are learning a lot about Liam. He hates IV’s in his feet, he hates a CPAP on his nose, he doesn’t like nights, and like Luke Combs “there’s no stopping me once I get goin”.
But we know he loves us – our voices, a calm hand, and especially being cuddled up in our arms. We will consider that feeling mutual.
We will keep learning about Liam and how to care the best for him that we can. We thank God each day we get to hold him, and count ourselves blessed. Also a special shoutout to the whole NICU team at Helen Devos, nothing but love and care from each person that’s helped with Liam since he was born.
Thank you to our community – each and every person that has been praying for us, encouraging and supporting us with love, gifts, meals, words, all of it. I’m sorry we’ve not been able to engage as much with you all this week, there truly hasn’t been time to do anything but keep our eyes on the prize. We hope to be able to bring you all into his life more and more going forward as we settle into whatever that new normal is going to look like. Keep praying for endurance for us, pray for our kids to be protected from not being with mom and dad all the time for the first time in their lives, for Liam to reveal to us what he needs, and for whatever the Lord puts on your heart. He knows what we need and will provide it.
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