Please accept my apologies for the lack of updates lately. We’re in a strange holding pattern, really, and it’s difficult to describe the ups and downs of each feeding and care session, each day and each week without reliving the roller coaster of emotions myself. As I’ve mentioned before, I prefer to just move forward…and that we are slowly doing in typical NICU 2-steps forward, 1-step back fashion.
–Struthers is gaining weight each day, and is now at 6 pounds, 0.9 ounces! He still fits in some preemie clothes, and the newborn ones swallow him whole! It’s also exciting to Mommy that he’s now in a diaper size we can actually buy in the store!
–He’s now back down to 1.5 liters per minute on his VapoTherm (high flow), which is where he was when we left Denver 3.5 weeks ago. We attempted to wean him down to 1 yesterday, but that didn’t go so well, so he’s back at 1.5 and will stay there at least a few more days.
–In addition to his respiratory issues, Struthers has struggled mightily with reflux. A common problem for newborns, especially preemies, it is bad enough to prevent him from what we need him to do now–feed and grow. So he’s on Prevacid for now and spends much of his sleeping time upright or at a sharp angle. We may have to discuss other options soon, as he’s showing signs of not wanting anything in his mouth, and that could present a whole new set of issues.
–When do we get to take Struthers home? Who knows! Last Sunday, the attending Neonatologist said he thought he’d still see us when he was back on in 2 weeks (there are 3 of them that rotate through a week at a time). On Monday, Struthers was a rockstar and did three full feedings NORMALLY (not through the NG tube) back to back, and the nurse asked if we were ready to bring him home and said it would go very quickly from there. Then the rest of the week happened and the attempted wean on Friday left me wondering if he was EVER going to come home!
–Tonight I write this post from a hospital room, where they are having me ‘room in’ for a “feeding challenge”. Most preemies do much better with a bottle and go home taking most of their feeds in that manner–but not Struthers! He much prefers the ‘real thing’, and the physicians are hoping that my availability to provide that through a continuous 24-hours will perhaps get him over the feeding hump, help with the reflux, and give them a better idea of how ready he is or isn’t to cease the tube feeds. I was super excited about this, simply because I’ve been waking up every night anyway to pump, and I’ve so longed for the ability to roll out of bed and cuddle with my son. Just a little incentive works wonders!
–UPDATE: The Feeding Challenge was just that…a challenge. He definitely took more orally than he has through the night, but he’s still struggling so much with the reflux that he often didn’t want to take anything by mouth, in any manner. So this Sunday morning brings a weary and discouraged Mommy whose heart is breaking and wants to take away the pain that’s so bad it makes his throw his head to the right to cut off his airway. It’s such a Catch-22. We could remove his NG tube and the reflux would likely get better since the tube holds his sphincter open, allowing the acids to come back up. But we don’t know yet if he’s strong enough to take all his feedings orally, and we don’t want to give him an aversion to having things in his mouth if we take away our tube feeding option and have to force feed him. Ahh, preemie problems…
–Tomorrow I will go back to work at 50% time. As usual, my employer is being very flexible, and I would expect that we will get into a routine with ease. And then that routine will change when it’s time to bring him home.
I’ve been dealing with a lot of grief lately, and that’s a difficult thing for me to even admit, especially when I see much more tragic stories and things happening around us. And I know we are so blessed to be where we are in all this, so then I feel guilty for even thinking of some of these ‘losses’, because I’ve really lost nothing, only gained, right? Most of my grieving has to do with the fact that none of this has been normal, and yet life must return to normal for me. In other words, I’m grieving that my “bonding time” with my child has been spent in the NICU, with well-meaning caregivers limiting what you can and can’t do with your child. I’m grieving that he’s three months old and hasn’t been out of the hospital, much less had cute little newborn photos made. I’m grieving that I’ve never been awakened by his cry in the night and been able to comfort him. I’m grieving that even when we bring him home, we can’t take him out in public, go show him off at work, have a welcome home party at the house for him, or possibly not even get those photos done. Some of my closest friends and lots of family near and far have not met my child, and might not until this summer…that’s tough on a lot of fronts. I need their support, I need them to see how healthy he is one minute, and how very fragile the next. And I know every new mom deals with the difficulty of going back to work…but most of them have had at least a few days at home with their child. So my grieving is a combination of the stress of going back to work with a child still in the hospital (undoubtedly also mixed with a little guilt), and not knowing when that will change or what things will look like when that long-awaited discharge day comes. And rooming in on the “normal” Mother-Baby Unit…well, that was a sobering reminder of how different and lonely our journey has been. So, with that said, your continued prayers are appreciated. They are carrying me right now, because though I’m praying and at times have literally felt His peace envelop me through this, sometimes I get weary of just crying out to him or plain don’t know what to say. As Struthers is “feeding and growing” with his own little struggles, God is truly “feeding and growing” me with my own share of struggles as well.