It’s amazing how quickly time flies, but it’s even more amazing how slow time goes when you’re looking to jump over hurdles.
Little Jonathan has been alive for 5 weeks now and already so many things have happened in his life.
If you’re just now joining us here, feel free to read about the beginning of Jonathan’s story.
Some of the milestones he’s made so far is getting up to 300ML per day for his feedings.
We had some struggles in the beginning with him being in pain and us not being sure what exactly the problem was.
We learned he has really bad reflux. This means feeding time for him is a lot slower than a normal baby, but as long as we burp at least 4 times while feeding him a 2oz bottle, he doesn’t lose any food from reflux.
We also learned how to elevate his crib so he’s not totally flat while sleeping. You do it much like you would for a person who suffers from a hietal hernia. He sleeps so much better now!
We have also learned how much he HATES being in a dirty diaper. Whether it is #1 or #2, he wants his pants changed ASAP!
We have a humidifier going constantly by his bed to help with his exposed sinuses, gum and upper lip. With the cleft lip and pallet, the membranes in his sinuses are subject to constant air flow, so the extra moisture keeps it from getting dried out as well as not bleeding.
Right now he seems to be a pretty serious fella!
He means business when it comes to eating, being rocked to sleep and also getting changed.
We diffuse essential oils in the room too. It’s a peaceful sleep blend and it does great to help keep him calm at nighttime. I also diffuse eucalyptus once a day to keep the air clean.
He will start with the speech therapist next week too.
We are getting closer to the 10lb mark and once he’s there we will begin meeting with surgeons, choose a team and then schedule his first repair surgery.
Overall, the last month has been good. While I’ve had many sleepless nights trying to figure out what his specific needs are, he’s done great in the grande scheme of things.
We will meet with his pediatrician in 4 weeks and at that time I will post another update!
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