4 to 3.5 to 4 to 3.5 to 4 to 4.5 to 5

We are now at 5 liters per minute of O2 support.

9/12, Jon

He’s doing great actually, gaining weight like crazy (he’s up into the mid 30’s percentile! He used to be 0th!), and is pleasant, joyful, and massive. Breen is now 12 lbs 9 oz!

He is well loved at the NICU, incredible nurses and therapists play with him all day. This was especially heartwarming to us while we were getting over the preschool bug.

Erin has been feeling grand for a couple days now, I feel quite good with a nagging cough. Nora has forgotten all about being sick and is as amazing as ever.

Dr. O at the Portneuf NICU put a call down to Primary Children’s Hospital in SLC to talk with the pulmonologist, Dr. L, about Breen’s increasing O2 needs. This is the same Dr who was quite pessimistic about Breen’s chances as we were about to be back-transported. She was nervous we would hit the “wall” for Breen’s lungs, as we weaned, which may cause deflation, and we would lose ground until we ended up on a trach. I believe her words to Erin on the day we left about Breen were: “he has some of the worst lungs I’ve ever seen”.

I braced myself as Dr. O told me what Dr. L thought, and was surprised to hear that Dr. L was actually quite encouraged! Dr. L was mostly excited at how much Breen had grown, and how much he was continuing to grow since coming home. To put it in perspective, Breen weighted 8lbs 10oz on August 3rd when we were back-transported, and now weights 12lbs 9oz, packing on nearly a whopping 4lbs in about 5 weeks. He’s gaining about 45g a day on average in that time. Another good marker is that he was 3lbs 8oz on April 9th, so it took almost 4 months to put on 5 lbs, and then just over a month to put on an extra 4lbs.

We left SLC off the growth chart (meaning we weren’t even in the 1st percentile for weight), and we are now very much on the growth chart. To her this is outstanding news, and cause for optimism. She said a few additional things as well:

• Breen’s O2 needs may be up simply because he’s gaining so much weight. It’s a funny balance here: as he gains weight and length, his lungs grow which builds better breathing infrastructure. But also as he gets chub chub, perhaps his lungs don’t grow fast enough and his heft simply demands more oxygen to get the job done. It’s not going to be linear development with Breen, this uptick could be a simple blip as the result of growing so big so fast.
• Dr. L also suggested a slightly different breathing medication regiment, which Dr. O implemented the other day. I don’t have a firm grasp of exactly what was changed, but some of the treatments will happen more frequently, and some of the steroids were changed so as to not hinder his growth. Perhaps this new strategy will yield positive results over time.
• Breen might also require more flow at night (when he’s deeply asleep with his mouth open, allowing for a lot of that flow to escape) and less during the day. We might start adjusting his flow every 12 hours or so.
• There might be gunk and fluid in his lungs that is hindering his breathing, so she suggested some rapid thumps to the chest to help loosen that gunk. This has caused him to spit up more clear fluids, which is a good thing because he’s getting rid of the gunk! But in the short term it could asl cause him to need more flow to get through it.

All in all, she wasn’t concerned and thinks that over time, if he keeps growing like he is, he’ll grow his way out of it. But emotionally for Erin and I, it’s a tough one to take. Intellectually it makes total sense, he was always going to have a long tough road with his lungs, and while this isn’t a setback necessarily, it is a bit of a wakeup call. A reminder. We want to give him as much time as he needs in the NICU to grow strong healthy (well, healthy for him) lungs. We need to grow lifelong lungs, not just “good enough to go home” lungs.

So we wait, and we hug, and we cry, and we are empty, and we get filled again, and we strain to stretch our hearts thinly across the portneuf valley in order to somehow be a parent to our two children. And we try to find a thread of patience that we can cling to, but not too hard that we might lose the feeling in our hands.

Nora Poetry Corner:

After snuggling for a few minutes on the red chair:
Nora: “I’m all done with this snuggle”
pause
Nora: “It’s not that I don’t like it. I’m just all done”

After whining and complaining about various things for a minute, she immediately goes quiet:
Nora: (finding one piece of Kix cereal) “I found a kick! Can I eat it?”

Reading Nora a story that has the phrase: “Who doesn’t like berries?”
Nora, echoing: “Who doesn’t like berries”
Me: “Do you like berries?”
Nora: “No”
Me: “So you don’t like berries!”
Nora: (pause) “Oh!”