When it’s taking forever to get your kid out the door

11lbs 15oz! We almost gotta 12 pounder! What a chunker. Dr. O likes to call him chub chub.

9/7, Jon

Nora brought a flu bug home from preschool, and the whole family got knocked flat. Sore throats, fevers, nausea. Nora seems to have kicked it, but the adults are still working through it. Took covid tests, negative. Just a preschool bug.

Aside from feeling rotten, the big drag is that neither Erin nor I have felt comfortable visiting Breen in the hospital. We haven’t seen him since Friday, four days now. It’s unbearable.

The nurses at PMC are incredible. They’ve been sending extra pictures and videos, and even facetimed with us tonight. What a wonderful group.

The PT there has also been brilliant. She is in there every day working with Breen on various motor skills and developmental milestones. She massages his scars, works his legs, and engages with him. In times like this when our hearts ache so deeply for our boy, it’s nice to know that he is being well taken care for, well loved, and is plenty stimulated.

Some pictures from the nurses:

Thank you PMC. You are amazing.

As we’ve been explaining here in the blog, the doctors have been looking to wean Breen’s O2 support each week on Mondays. Two weeks ago, they weaned to 4 liters/hr from 4.5, and he was doing so good on it that they thought they might be able to wean him again later in the week. On Thursday of that week, they checked his CO2 numbers, which looked amazing, so they went down to 3.5 liters/hr. He did well throughout the day, but later that night his FIO2 % (the blend of pure oxygen that goes through his cannulas) went up too high and they had to put him back on 4 liters.

He did fine on 4 liters through last weekend, and had another good CO2 reading this past Monday, so the care team again weaned him down to 3.5 liters. However, the same thing happened: his FIO2% creeped up throughout the day and by the next day (today), they put him back at 4 liters. It took a couple hours for him to work his % back down to an acceptable range, where he sits now.

This is frustrating, but not demoralizing. He had been weaning at such a consistent clip, that I foolishly extrapolated that out, coming up with a take-Breen-home date somewhere in October. But these past two weeks shows us that his development isn’t linear, isn’t consistent, it’s Breen. We’ve stalled a bit on 4 liters because Breen needs more time on 4 liters.

He is growing beautifully, averaging nearly 50g of weight gain a day since we got back to Pocatello. That is a great! They were hoping for an average of 25–30g per day, so he’s surpassed that. He is also growing in length, but not quite as fast. He puts on about .5cm per week, sometimes more, sometimes less. This is fine for his percentiles, and is pleasing the dietician, but is also perhaps why we’ve stalled.

An NP back in SLC said that growing in length is a better indicator for Breen’s lung development than weight. As he grows longer, he grows new lung tissue. Perhaps we need to park it at 4 liters for a few weeks in order for him to get longer, grow more lung tissue, and be able to breathe better.

I always say that I’d rather stay in the NICU a month too long than a day too early. I also have been feeling that once we finally do get to take him home, I’d like to keep him home. I’m not interested in taking this poor kid back to the hospital because he didn’t have time grow the breathing infrastructure he needed. Nobody is rushing us, and the NICU here is showing tremendous patience.

With the stall though, any prospective take-Breen-home-date dissolves.

We so badly want him home. After so many grueling months of waiting, these past few weeks have been particularly excruciating. We can start to see his shadow in our home, I can feel his presence as I turn a corner or sit in his room. But it’s not time yet. Breen needs more time.

I can already imagine that 5 years from now, I’ll bestressing to get him out the door for an appointment, or some other thing that seems massively important, and there’s Breen. Calm as can be, in his own world. One shoe on, one shoe off. Dragging half a coat and complaining that he has to pee. And hopefully I’ll pause whatever tornado I’ve worked myself into and smile at my boy. My beautiful and frustrating boy, in his own world. On his own time. We’ll get out the door eventually, we’ll bring him home eventually.

On Breen’s time.

Nora Poetry Corner (all while facetiming with Breen):

“I wish I could scoop Breeny up and hug him”

“When Breeny comes home, I’ll hold his hand as he walks up the stairs. And I’ll hold on the the banister”

“Maybe Breen would like to sit on my lap as I go down the slide”

“I’m gonna give him a hug” (see picture below)

Parents of Breen and Nora.