There are so many things that have happened in the last week and a half, but the biggest focus for us has been the NICU. It's had it's ups, but to be honest it's had more downs. This has to be one of the most difficult things we've had to deal with - as these are our children, who cannot speak for themselves ... but I am jumping ahead of myself.
PB plunged ahead and started taking full bottles completely by himself, so the NG tube was taken out and after two days of feeding independently he was discharged home on Tuesday. It was a bittersweet moment. On the one hand, we celebrated because our big boy was finally acting more like a term baby and was able to come home. On the other hand J, our little guy, had to stay at the hospital and now we were split - in heart, time and space.
Having a baby at home and one in the NICU is far more difficult and heart-wrenching than having both in the NICU. Though we were allowed to bring PB into the hospital with us to visit his brother, it was not worth it - there was no place to change him, we were crammed into a small space that was barely big enough for us both to be there let alone with another baby, and time with J was still compromised as we tried to care for PB (sometimes Momma B was left on her own with them both because I had to go pump). We then decided we needed to take shifts, but it felt like it was splitting our family even more and not all of our concerns would be met because only one momma was there to represent us both. Additionally, we were getting far less sleep caring for PB at home, so it was even more difficult for us to get a lot of time in with J.
Then there were our issues with the NICU's plan of care for our little guy. He was finally eating - he didn't need any assistance with a chin hold and he was down to every third feeding through the NG. However, we noticed a big discrepancy between nurses and the amount he would eat. Somehow one nurse that took care of him five nights in a row was able to get him to eat near to all of a bottle at each feeding, even skipping NG feedings if he acted actively hungry. Yet other nurses that were very negative in their communications with us would only get him to get maybe a third of his bottles and would decide he needed to have more rest thus going back to every other feeding thru the NG. When these concerns were brought up, we were often shut down by other nurses with the statement that it's always at the nurses' discretion. It was all very suspicious to us.
Then Momma B noticed one night that J was rooting and fussing, but it was an hour before the scheduled feeding (in the NICU babies are on a very strict every 3 hour feeding schedule) and the nurse refused to let her feed him and instead stuck a pacifier in his mouth. Thus by the time his scheduled feed came up, he didn't consume much because he'd wasted so much energy sucking on a non-nutritive pacifier.
Questions, frustrations, concerns were often not taken seriously or we were given grand generalizations about babies and eating and developmental milestones. We both had our moments where we just broke down - leaving little J got harder and harder every day. And four days after PB was discharged it seemed like J had not made any progress. In addition, we rarely got to see the doctor and requests for him to call us were never fulfilled. Yesterday I couldn't take it any more and let all my concerns out to his day shift nurse and finally I got a willing listener and someone that was also willing to help me find different solutions to address with the doctor to get our little guy home sooner. She also wrote a note to the chart at my request so there was no longer any question on whether the doctor was told to call me. It felt good to be able to talk about it with someone receptive enough to help.
And the doctor did call! In fact, today was a breath of fresh air. The doctor on call this weekend is not our baby's primary neonatologist, but is an older gentleman that seems a little more lenient with some of the protocols and more willing to try different ways to get these babies home. He stated exactly what we suspected, that it seemed like J's problem wasn't eating but rather a synchronization problem with his schedule and the NICU's. He was willing to work with us and allow him to get his NG tube removed and just be fed on demand. He did warn me that meant we'd have to be in the NICU for most of the day. He also warned me it may not happen right away, it may take up to five days, but we definitely needed to give it the full chance to work. J may lose a little weight at first or hopefully just break even, but if he "gets it" then he'll start to gain weight again and take in his full amount of needed calories.
In short, we can finally see a light at the end of this dark tunnel we had been navigating so blindly. He's been in the NICU for 17 very long days. We're ready for our family to be whole.
I'm also happy to tell you tonight we actually feel like we are as this is the first night we get to spend all together. The nurse reserved the family sleep room at the NICU for us so we can care for and feed J ourselves on his schedule. PB is chillin' in his porta-crib and we're lounging on a pull-out couch, but we're all together in one room with minimal interruptions. It almost feels like normal. Of course, it'll be so much better at home, but this gives us a glimpse into what that will be like.
All I know is our hearts are full tonight.