Merritt made significant progress last week. So much so that one morning his doctor explained that Merritt could go home if he could nipple all of his feeds for 48 hours. Andy was thrilled, and I was hesitantly optimistic.
Merritt's doctor should have said when he could nipple all of his feeds, not IF.
On Sunday, Merritt and I were moved to a more private space in the NICU, and we have been "rooming-in" for the past couple of days. We tested a 15-hour breastfeeding-on-demand experiment, which resulted in a 30 gram weight loss. I thought sleeping at the hospital would save me some energy and hopefully result in more rest, but at 6 in the morning after only 3 hours of sleep, the disappointment of our failure felt overwhelming. Tears flowed freely Monday morning.
Merritt was just not mature enough to consume adequate quantities of milk in order to maintain his body weight, much less grow. Coupled with increased fluctuations in his heart rate and blood oxygen saturation it was made clear that we would not be taking Merritt home anytime soon.
Understanding that no amount of practice, or cajoling, or effort on anyone's part can speed along his maturation process makes this both easier and harder to accept. Since we don't know when his skill set will kick in, I am tested by the uncertainty of the number of days we may still have left here. But it's less stressful too, because I'm saved from the burden to find a solution or to try harder to make our stay shorter.
The most difficult part of this experience has been the disruption to our family life. If we had been guaranteed a three week stay from the start, we might have established a different plan to meet everyone's needs. It's really hard to say. But we naively assumed that Merritt's stay would be short, and decided that we were best taking one day at a time. And, like they do, days have passed turning into weeks, and I'm terribly homesick.
Andy, Roscoe, Merritt and I, we're all missing each other in ways that are hard to explain.
As I type, Merritt nurses contently. A bath is up next. Back at home, Andy and Roscoe are making their way through the nightly bedtime routine and, soon after, Andy will join Met and I in our suite for some snuggling and catchup. I'll be staying the night at the nicu from here on out because little Merritt pulled out his feeding tube this morning and so we've been encouraged to give another go to breastfeeding on demand--I think his doc wants us out of here.
UPDATE: Since the tube was pulled his coordination has improved tremendously and his "spells" have decreased substantially. It could have been the tube, or it could be he difference of another 24 hours passing. Either way, he did an awesome job today, waking to feed, communicating his hunger, and latching and nursing well for substantial periods of time. Tomorrow is a new day and I bet it will be another good one.
continuing to pray for your family!! Stay strong!
ReplyDeleteThinking of you guys all the time. When Merritt finally comes home (hopefully very soon!) there will be cheering from every corner of the US :)
ReplyDeleteGood job, Merritt! I continue to send good thoughts your way!
ReplyDeleteGood news! Thanks for adding that update at the end. Get strong Merritt!
ReplyDeleteI can't imagine how hard this is on all of you. Thank you for taking the time to update us on everything going on. I'll keep praying for things to move along in the right direction.
ReplyDeletebtw, the pic of him looks so adorable! He looks like he should be holding a cigar in that hand and saying, "here's looking at you, Mama!"
blessings,
Angie A.