Upset Tummy
Things are more or less the same from three weeks ago. As a family we’re better with the daily routine and more adjusted to the lack of sleep. Crew still has a lot of stomach pain, though. Since he was born we’ve tried three different formulas (we have to use them to fortify breast milk), Lindsay has tried going dairy free and nut free, and we were finally able to convince our home nurses and pediatrician to try a med for acid reflux. All seemed to help just a little bit over what we had just been trying, but nothing is getting rid of his acid reflux.
We’re keeping his O a tiny bit snug to prevent it from growing bigger, and Lindsay and I now wonder if that so so tiny amount of wrapping is enough to upset everything. We just don’t know for sure. Sometimes we wrap it very loosely and he still has stomach issues. All we can do is hope that he grows out of it soon.
Related to all of that is his feeds - Crew still has his ng tube in and we still have to use the pump for the majority of his food. Crew has showed great promise with breastfeeding, but it’s too hard to track ml consumed and so we’re not sure of the future role breastfeeding will take. He has had a week of double the desired weight gain, followed by a week with zero weight gain. Crew’s home nurses and therapists are keeping a close eye on it all.
As far as Crew’s oxygen goes, there have been a good number of days where it can be off completely for hours and he’ll be just fine on his monitor. Other than those times it’s generally just on a tiny trickle of .016, or maybe .03 when he’s in the deepest of sleeps. Good progress being made there!
Over the last few weeks we also were able to have our friend Lexi come and take some newborn shots for us. We love them! Check here out here on Instagram: @lexcmarielifestyle
We also were able to have the awesome experience of blessing Crew in our home this last Sunday. It was great to be able to keep it very small with only immediate family. It’s something we won’t forget! If you have been following Crew’s journey and are interested more in what our family believes, our church’s website is the best place to start to learn more: churchofjesuschrist.org
One last thing to share is that his skin is growing well around his O. The green part is scab and is separating from the new skin underneath. Many of you friends and family have asked us about this, and others with new O baby diagnoses themselves have been reaching out to us, so we figure we’d share at least one picture of Crew’s progress. You can also see how much smaller his O is from birth especially, but even just the two weeks since his above newborn pictures from Lexi.
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