Updated: May 15
You can go read the last blog post, if you didn't a year ago (I don't blog regularly. HA)
TL;DR version: Jaeger is great, but has Adrenal Insufficiency and is Growth Hormone Deficient. Pictures at the bottom!
When we left off, we were still in the NICU working on nursing before bringing Jaeger home. He was having trouble gaining weight, so they switched to feeding on demand and added a higher calorie formula once a day to increase calories. We were able to take him home after 2 weeks in the NICU.
While in the NICU, the endocrinology team ran a series of tests, as Pyriform Aperture Stenosis often can be accompanied by other 'midline' issues. Something genetic that affects development down the midline. In our situation, Jaeger was diagnosed as Adrenal Insufficient. He began his maintenance cortisol dosing while still in the NICU.
While we are and were aware that it could always be worse, this diagnosis weighed heavy on us. We were in denial for a long time, thinking there was a mistake, as Jaeger came through surgery fine without the very necessary cortisol. But now we view that as just another miracle.
ADRENAL INSUFFICIENCY. (scroll down if you don't want a lesson on AI).
There are a few levels of Adrenal Insufficiency. Jaeger has 'central AI' or 'Secondary AI.' There is nothing necessarily wrong with the adrenal glands themselves, but more likely with his pituitary gland, which releases the hormone that tells the adrenals to release cortisol. You know cortisol as the stress hormone, likely relating it to weight gain while stressed, or what kicks in for fight-or-flight. It's a VERY important hormone that I knew very little about before diagnosis. Cortisol also helps control blood pressure, increase the body’s metabolism of glucose, and reduces inflammation. Our bodies need cortisol to survive. Jaeger is now on a maintenance dose of prednisolone, and will later switch to hydrocortisone, that replaces what his body should be making. When he gets ill, with fever, experiences physical stress or injury we 'stress dose' or 'triple dose,' tripling what we dose him to cover what his body would be doing to combat that stress. If he vomits more than once or experiences severe diarrhea (ie. stomach bugs), or shows signs of Adrenal Crisis, we have to administer an emergency shot of Solu-Cortef before taking him to the closest emergency room. Hello anxiety for Mom! Jaeger is handling his twice daily medication extremely well. He even holds the syringe himself right now and sucks the meds out! It's scary to have a child with a potentially life threatening condition. It has caused me a lot of anxiety, but has brought me before the throne of God on a regular basis, which is not a bad place to be.
When we took Jaeger for his 4 month appointment, they confirmed what I had been noticing but denying, that Jaeger had not grown since his 2 month appointment. The pediatrician immediately referred us to endocrinology, as Jaeger has a history of hormone issues as it is. That was in August, in late September we had a STIM test done to determine that Jaeger DID have a growth hormone deficit. That was a rough day, as the IV they took over an hour to place didn't work for blood draws, so in addition to that trauma, he had to endure 6 blood draws/pokes. Yeesh. After the endocrinology appointment in November, we moved forward with the process to get growth hormone therapy started. On December 14, Jaeger began a daily shot of growth hormone using a Norditropin pen. As of the end of March, he's still a peanut. It can take 3-6 months to start to see growth, but we caught it early and started treatment early so he'll still reach his full potential height (which will still be a bit short...sorry kid. You've got shorter parents). It feels like we've spent his first year just waiting for growth. "It'll be better when he's bigger." sigh. This has also been hard for me because Adelyn was a CHUNK. The best rolls. Jaeger had rolls at 2 months is now just a bony little thing since he started moving and using the calories he's getting. I had to give myself permission to grieve the fact that I won't have another chunky baby.
Outside of medical issues, he's developed well. He crawls, pulls himself up, and gets into EVERYTHING. He loves to chat, is stubborn as his dad, and as active as his sister. He 'vroooms' cars and other things across the floor, including himself with the walker. He's quite funny being SO mobile and so small. Like a one year old in a 6 month old's body. LOL. He's finally coming around to food, actually eating it instead of tasting it and dropping it to the floor. He LOVES bananas and bread (great for his digestion, right) and meat!
He's very much a blessing and we consider his entire first year of life a miracle. We praise God for letting us experience Jaeger, all the highs and lows. We've spent more time praying this year, and I don't think all the troubles have happened without the good.
This year we really came to grips with the fact that our kids do not belong to us. They belong to God first and forever. We get the joy (and struggle) of raising them to know Him, but in the end God is holding them tighter than we ever could. He loves them. He knows them. He knows all that Jaeger needs while on this earth. He sees every crisis in our future. While there may be unknown issues still to be revealed to us, HE KNOWS. We rest in that fact. We will do our part to keep our kids alive and on the path to righteousness, knowing that God will do his part as well.
Click on the pictures to scroll through!