NICU Update: 70 days down, ? to go

Ngl, these last several weeks have been ex-haauss-ting!

I’ve been doing my best not to overload myself – not to put any undue pressures on myself. Inevitably, however, right now my life’s circumstances have me stretched pretty thin.

But those same circumstances are also helping me clarify my purpose and priorities. They’ve made me more intentional about where I put my time and resources. They’ve emboldened me in some ways, helped me be gentler in others. They’ve led me to do only what’s mine to get done, and asked me to leave the rest in the Lord’s hands.

70 days in the NICU: Ronin is now 2 months old

Ronin has been doing well in the NICU. He had been steadily weaning down on his oxygen support (from being intubated, to a bubble CPAP, to lessening percentages on the high-flow nasal canula). Last week he turned 2 months old and had to get his immunizations. For NICU babies, it’s much more of an ordeal than for healthy babies. The shots had to be given over a 24-hour period and Ronin had to be put higher on his oxygen flow. We’re hoping to gradually have him weaned back down over the coming weeks. Little by little, day by day.

On Monday he also required a blood transfusion to help boost up his hemoglobin counts. Apparently this happens fairly frequently for NICU patients because their little bodies are so small and depleted from constantly having blood drawn for labs. (I’ve been having a crash course in medical school. I feel overloaded trying to keep up with all this new information, and emotionally drained from wishing I could take away all my baby’s pain.) By Tuesday, Ronin was requiring slightly less oxygen and had high O2 blood saturations. So praise be to God, things are moving in the right direction there. Little by little, day by day.

Before these 2-month shots derailed his oxygen improvements, Ronin’s therapist was able to start attempting to feed him with a bottle. She’s a bubbly young nurse and was completely stoked that he was able to get 13 ml in one go! (I’m pretty sure this only about a tablespoon, but it’s a good start.) Both his prematurity and Down syndrome will make bottle-feeding a challenge. Getting him to take a bottle and hopefully eventually to nurse will be a long process. Little by little, day by day.

Then there are the questions of when he’ll be able to come home? When will he be able to get his heart repair surgery? What’s the next thing ahead?

Earlier this week I talked to a NICU nurse, a neonatologist, and a cardiologist, but the only consensus was that no one knows for sure. Ideally the surgery would be when Ronin’s close to 6 months and/or 5 kg (about 11 pounds). If he gets weaned off more support, he might be able to go home before surgery. He’d still need to be fed through an NG tube and we’d have to make lots of trips back into the hospital for echocardiograms and other monitoring, but I could be with him 24/7. However, if he was able to come home before surgery then we’d have to be extremely cautious not to let him get sick – so it’d be kinda scary because we’re moving into flu/RSV/COVID season.

These last 70 days in the NICU have been extremely difficult for me, and every day when I have to leave him there it breaks my heart. I’m torn between being with him and my other commitments at home. I’ve absolutely depleted my gas funds. I want to leave the NICU.

But I also want to keep him safe.

It’s just tough.

So the mentality remains the same: little by little, day by day.

The new school year

Meanwhile, back at the ranch (which is a phrase that San Diego-me never thought I’d be saying), the girls are starting up another year of school. Since we homeschool, I feel like grade levels are relatively arbitrary at this point. But when asked, Mika is in 7th grade, Cami is in 5th grade, Leilani is in 4th grade, and Hope is in kindergarten.

This is only our second year of homeschool, so I’m still honing in on which educational philosophies and methods will best suit us. Texas has extremely lax homeschool regulations and requires no reporting, which can be either good or bad haha. I absolutely love the flexibility we’re allowed, and how we’re able to do deep dives and completely nerd out when we want. But this year I’m hoping that I can keep better records of what we’re working on and set goals for where we’re moving. I also would like to look into standardized testing so I can get a sense of where we might need to focus more attention. When we were in the Colorado public school system, the older girls were all placed in Gifted/Talented classes and had always been high performers. I don’t put much value on labels and test scores, but I also don’t want to do my kids a disservice depending on what their decisions may be past their time having me as their teacher. I’ve been working to educate myself so I can make sure I’m setting them up for success.

I’ll soon be using this blog as a digital scrapbook of our educational journey. My dream would be to keep this site active so the girls can look back on these years.

Thank you to my husband

Ray has had to work overtime this month, getting out the door just after 5am and coming home between 6-7pm. He’s working as a machinist in a shop that has no AC, and it’s been averaging 105 F most days. He’s in charge of the guys he works with and usually is the one that’s held responsible for any issues that come up.

Ray has also been handling all the medical bills that have started coming in. We realized pretty early on during this pregnancy that I’m not emotionally strong enough to deal with the money side of all this – especially when the numbers are astronomically comical. My role is to take care of Ronin and to manage things at home; Ray has been handling everything else.

I know he’s exhausted. I know there are days when he’d much rather stay home than deal with excessive heat and grumpy men. I know that there are a lot of days when things don’t go as planned, machines break down, and it feels defeating. He’s hardly been able to visit Ronin due to his work commitments, and I know it’s hard for him because he struggles with being helpless to fix the situation.

But he’s doing so much. He’s stayed so strong for me, for Ronin, for the girls, and for the rest of our family. I’ve been a witness to how much the Lord has been growing my husband over the last couple years. I pray over him daily but probably don’t thank him enough. I’m so grateful for everything he does, and I’m excited about what the future holds. I just hope these days – even amidst its struggles – don’t go by too quickly. Each and every day has been a blessing. I love you, Ray.