And It Starts

Yesterday (day before yesterday now, I guess) we had the opportunity to do a 24 hour sleep in inside of the NICU. While the boys weren't able to stay in the room with us, we were offered one of the rooms to stay in over night so we could easily roll out of bed and be to the boys' room within about 15 seconds for each of their feeds. Nathan and I took turns, me nursing them and Nathan bottle feeding them, so that we could each get longer stretches of sleep between our feedings. At this point, "longer stretches of sleep" has become a relative term...3-4 hours is great, while 2 is ok, and 1 is enough to get by on. We figure it's good practice for when we take them home.

One of the goals was to see if the boys could go 24 hours without needing to be fed through their feeding tubes. The other was to see if they would still gain weight when being nursed 5 out of 8 feedings, with only 3 bottle feedings. The milk that they get from the bottle or feeding tube is fortified with formula in order to bring it from only 20 calories up to 24 calories, which helps them gain weight. While we still had to give them about half of their feeding through their tube a total of two times in 24 hours, we did manage to do primarily bottle or nursing. And they continued to gain weight!

The tentative plan was to do another 24 hours of staying in the NICU if the first 24 hours was a success, but unfortunately they did not have a room available that night. We have our names on the list for tonight in case a room becomes available, so we'll see. We're also in the "let the boys tell us what they need" stage. They've started waking themselves up when they are hungry, which they weren't doing before, and they're waking up every two to two and a half hours instead of the three hour schedule we had them on. So we've been having the nurses call us if they wake up earlier than we were planning on being there for their next feeding. Which is why I am writing this at 5 am...the boys woke up at 3:45 rather than sleeping until their 5:00 feeding, so I just got back to our room at the Ronald House.

Along with letting the boys dictate when they eat, we're also learning to work with them in terms of keeping their energy up for their feedings, so they don't fall asleep 1o minutes in. With the help of their nurses, we've decided to start postponing their cares (diaper change, temp check, listening to their heart/lungs, etc) until after they have been fed, because we've noticed that they will be wide awake just before and during their cares, use up their energy being fussy, and then don't have very much energy for eating. And yet when we have waited to do their cares, they generally stay awake for the entire feeding. We're hoping that doing it this way will help the boys get full feeds even more consistently (without the feeding tube) so they can go home sooner!

Speaking of going home, I realized this morning that the closer we get to going home, the more likely it is that our nightly (or morningly?) goodbye to our nurse will be the last time we see them! It's bittersweet...it's super exciting because it means we are going home soon, and yet sad because some of these nurses have become like friends. Tonight's nurse was Grace, and she's had the boys more consistently than any of our other nurses, so she's gotten to know them (and us) really well. She's the perfect blend for a nurse; knows that we have been here for almost a month and a half so we have a pretty good handle on how things work, and yet isn't afraid to speak up if she thinks that doing something differently will help the boys. She's incredibly competent, and super willing to help us brainstorm ways to work with the boys. And she won't be back on duty until the end of next week. So when we said goodbye at the end of this last feeding, it was with the knowledge that we may never see each other again. And she's not the only nurse who we will miss when we leave here...you can't be around people day in and day out for well over a month without them becoming a part of your life and we're incredibly thankful for the amazing nurses we've had during our time here.

On a closing note, there were times before we started going to almost every feeding (ha, times? try most of the time actually) when I felt guilty for only going to three or four of the boys' feedings. I felt like I was being a bad mommy, like I needed to be there more often even though they were still sleeping most of the time and we were only doing rec feeding and I needed the sleep myself. But in the past few days I've been getting a lot of encouragement from the NICU staff. I can't remember if I've already posted this, as it's 5 am, but on Monday I spoke with a Patient Care Coordinator (who is also a lactation consultant) about my frustration with how slow things seemed to be moving in terms of the boys' ability to feed. And she told me that even though she works in another section of the unit, she has seen me come in every single day, several times a day, much more often than most other parents, and as a result, our boys will be going home sooner than most babies do. That just made me feel good.