Henry’s Medical Updates
Oxygen
At the beginning of March, Baby Henry’s pulmonologist ordered us back on oxygen for at least the next 2-3 months, just while he’s asleep. They want to give him a little more time to grow. At his overnight oxygen test, Baby Henry had about 20 events per hour where his oxygen levels dropped below baseline for at least 10 seconds each, called de-sats. We want to have less than 5 of those de-sat events per hour.
Henry going back on oxygen was crushing for me at first. I know that logically this is good for him- he actually sleeps better with the oxygen- but mentally and emotionally it feels like failure and taking steps back after all we’ve been through.
It’s a fight with him to put the nasal cannula on every night, and get him all set up with the stickers on his face and the pulse oximeter alternating on his foot with all the cumbersome wires, but it must be done.
Feeding Therapy
The feeding therapist told me that we are dealing with seriously the hardest issue any of her patients face. Chronic vomiting is not just logistically fatiguing, but it’s also impactful to all the things that matter for a baby (growth and development), and the underlying causes are multifactorial so it’s difficult to correct other than by trial and error.
Since babies learn by association, Henry is developing a bottle aversion because he’s associating eating from the bottle with throwing up. He’s gone from downing over 50% of his feeds in the NICU to around 40% in February, and now down to less than 7% on a good day.
At the beginning of the month we shelved the Thickener in favor of focusing on solving the vomiting. The gains with thickener are so minor it wasn’t worth the hassle of preparing with gel mix while I dealt with PPD and wasn’t able to gavage thickened milk through the feeding tube. Our appointments have extended to maybe monthly.
I’m back to wanting to try the thickener now that he’s only taking maybe 2 bottles a day anyway. Might as well try thickening them and see what happens.
Specialized
Our doctor was concerned that Henry continued dropping on the growth chart at the beginning of March.
He called in reinforcements and asked us to see the pediatrician from their office who may have more ideas on treating Baby’s vomiting and also connections to a pediatric GI.
Weight Gain
We’re working closely with our Nutritionist. We increased his calories from 22 to 24kcal in his formula. At the same time we started the transition to the formula provided by our insurance, from Enfamil Gentlease NeoPro to Enfamil Gentlease. He’s doing okay on it despite vomiting daily.
Baby Henry finally had success and met his weight goal on March 16th! It was right after he turned 4 months adjusted age. He’s doing some catch up gaining, so we are not making any changes to his feedings while he’s able to gain on that. “If it ain’t broke don’t fix it.” He now weighs over 12 pounds!
Urology
The urologist gave us the all clear on Baby’s kidneys, just one mild-to-medium thing (hydrocele) to be rechecked in 6-9 months, and no ultrasound or X-rays needed next time.
Pediatrician
The new pediatrician was excited to meet Baby Henry after hearing from our family doctor. “What Black Magic are you using??” he asked. He was expecting us to have much less progress after seeing the charts, but Baby Henry has made some “unheard of weight gain” at over 30g per day. I’m so proud of him!
How we are accomplishing this weight gain? I told him I wasn’t sure but I outlined the changes:
- Going on oxygen during sleep
- Switching to more gavage feeds instead of bottles due to his increased oral aversion and overlapping appointments
- Making sure we get at least 7 feeds each day
- Transitioning to the original version of our formula
- Bumping up fortifications to 24kcal
- Sticking with the current formula while dealing with projectile vomit daily, as switching formulas too often (even to a more elemental one) can cause him gut issues
We went through my Binder for Henry’s medical history, all the medications he takes, the specialists he sees for which issues and what they’ve determined, the tests we’ve done and findings, feeding therapy updates including the reasons we passed on thickener, and how we are still looking for help with the vomiting.
Our pediatrician made these changes:
- Increased the anti acid reflux medication to adjust for Baby’s growth.
- Removed the multivitamin and iron supplements so that Henry has a better chance of tolerating his feeds, plus the formula should have enough of the nutrients he needs without them.
- Offered us a measles vaccine in addition to the ones on the schedule for 6 months. We took it because 2 weeks after vaccination he should be over 90% protected, and Utah is super scary right now with high exposure for measles.
- Gave us his personal cell phone number and told us to call him, as well as update him on Henry’s weight within a month.
It meant so much to me to have access to this doctor who understood everything in our NICU binder. I loved that they took extra measures to keep us safe like using a “clean room” that no sick patients had been in, he did an actual exam of Baby and kept commenting on how cute he was.
I didn’t know that I would use the phone number so soon.
Vomiting
The very day we met the Pediatrician, Baby had bright yellow vomit (bile?) in higher volume all day starting before our appointment. Preceded by coughing and hiccups, and he couldn’t stop from projectile vomiting 3x with the ng tube coming out on the 3rd time. Every time.
He received 4 vaccinations that day. Baby’s system is dealing with too many things so he broke out in a fever. After talking with the pediatrician, I ended up putting him on an alternating schedule of Tylenol and ibuprofen for his fever and pain.
My poor baby boy… I’m putting together a list of questions, observations, and things we can try to discuss or eliminate so we can figure out this chronic vomiting that’s affecting Henry’s life so much.
-Kat
