*Note: this post was written last week but I wasn't able to post it because there was no wifi at the hospital
Sunday, January 17, 2016
There had been very little sleep for me the previous night. We had gotten home late from Julie and Rishi’s party, then I had to pump, and we had to get up extra early to make sure we arrived at the hospital before 8am so we could try to get in 4 feeds that day since we were going to my in-laws for dinner that evening. So with only about 3 hours of sleep we made it to the hospital for 7:55am. We had a new nurse today and as it turns out she had already fed him through the NG tube. I was so upset. The whole point of being there that early was to get in that feed! Plus everything feels so much worse when you’ve had so little sleep and not enough food. Today my mantra was going to be “hold it together, Melissa”. And I tried my hardest.
Fortunately, rounds brought more positive news for us. I feel like someone should make a cheat sheet for parents explaining rounds and who is present. It would be a waste of the doctors time to explain it at rounds but it would make things so much easier to understand in the early stages of your hospital stay if you were told what rounds are and who is there. From neonatologists, residents, RT’s, RN’s, pharmacy and various specialists… it can be overwhelming. The big news today was that we would start breastfeeding exclusively while I was there without any top ups or supplementation through gavage. They were going to start weighting him before and after each feed to make sure that he was getting enough from me and would adjust the rest of his NICU stay based on how he was doing. I was a little nervous about this because with the antibiotics I was on to treat the mastitis I’d already seen my milk supply drop while pumping, then to add on a fussy, baby who had only been eating for a few days and was just learning how to breastfeed while battling withdrawal symptoms to the mix… I was anxious that we’d but stuck in the hospital forever. But worrying about it wasn’t going to help the situation. I just had to be patient and give myself and James time to figure things out.
Sunday, January 17, 2016
There had been very little sleep for me the previous night. We had gotten home late from Julie and Rishi’s party, then I had to pump, and we had to get up extra early to make sure we arrived at the hospital before 8am so we could try to get in 4 feeds that day since we were going to my in-laws for dinner that evening. So with only about 3 hours of sleep we made it to the hospital for 7:55am. We had a new nurse today and as it turns out she had already fed him through the NG tube. I was so upset. The whole point of being there that early was to get in that feed! Plus everything feels so much worse when you’ve had so little sleep and not enough food. Today my mantra was going to be “hold it together, Melissa”. And I tried my hardest.
Fortunately, rounds brought more positive news for us. I feel like someone should make a cheat sheet for parents explaining rounds and who is present. It would be a waste of the doctors time to explain it at rounds but it would make things so much easier to understand in the early stages of your hospital stay if you were told what rounds are and who is there. From neonatologists, residents, RT’s, RN’s, pharmacy and various specialists… it can be overwhelming. The big news today was that we would start breastfeeding exclusively while I was there without any top ups or supplementation through gavage. They were going to start weighting him before and after each feed to make sure that he was getting enough from me and would adjust the rest of his NICU stay based on how he was doing. I was a little nervous about this because with the antibiotics I was on to treat the mastitis I’d already seen my milk supply drop while pumping, then to add on a fussy, baby who had only been eating for a few days and was just learning how to breastfeed while battling withdrawal symptoms to the mix… I was anxious that we’d but stuck in the hospital forever. But worrying about it wasn’t going to help the situation. I just had to be patient and give myself and James time to figure things out.
Advocating for Holistic Care
The grandparents all came by for their regular visits (still strange to think of my parents as grandparents now!) and were loving the fact that they could hold James and move around, but the frustration of the NICU rules were really starting to get to me. I understand that every hospital is different but there were certain aspects of parent care that seemed to be lacking. Limitations on who could visit and how many could be at bed side… but the ones that were getting to me were about cell phones and having a parent present. I had been told off for using my phone in the unit and was asked to put my phone on airplane mode but there was no wifi so if I needed to contact Chris or update family I had to leave the unit to do so. Yet at the PCICU we got to video chat with family at bedside so they could see baby. Then one time while I was pumping I came back and my mom was gone. It seemed odd so I went to the parent lounge to see if she was there. She was, but it turns out that they had asked her to leave because a parent had to be present at the bedside with any visitors (even though only our parents were allowed to visit by their rules). But this meant that I never got to take a break. Family was there to support us and give us breaks but I couldn’t leave to eat or take a nap or pump without them being asked to leave. Plus there was no where to sleep in the parent lounge. The chairs were quite comfortable but it would have been nice to have a place to stretch out and take a nap like when we were in Edmonton. The patient care was still great of course, and the nurses were exceptionally nurturing and lovely to work with which makes a huge difference, but we missed the holistic approach to care that we had received at the Stollery. So I think since they’re currently building a new facility, Chris and I are going to try and advocate for some changes. It won’t benefit us, but if we can possibly help an already stressful situation be a little more pleasant and manageable for another family in the future we would be happy.
But we are endlessly grateful for everyones work at the NICU! They are the reason our little peanut is alive! However, when you’re exhaustion is mounting, you hit set backs, and you’ve been living in the hospital for nearly a month there are some little things that would make the experience easier on the entire family. Even something as simple as a fresh, un-chipped coat of paint on the walls and a couple plants would make a world of a difference.
The grandparents all came by for their regular visits (still strange to think of my parents as grandparents now!) and were loving the fact that they could hold James and move around, but the frustration of the NICU rules were really starting to get to me. I understand that every hospital is different but there were certain aspects of parent care that seemed to be lacking. Limitations on who could visit and how many could be at bed side… but the ones that were getting to me were about cell phones and having a parent present. I had been told off for using my phone in the unit and was asked to put my phone on airplane mode but there was no wifi so if I needed to contact Chris or update family I had to leave the unit to do so. Yet at the PCICU we got to video chat with family at bedside so they could see baby. Then one time while I was pumping I came back and my mom was gone. It seemed odd so I went to the parent lounge to see if she was there. She was, but it turns out that they had asked her to leave because a parent had to be present at the bedside with any visitors (even though only our parents were allowed to visit by their rules). But this meant that I never got to take a break. Family was there to support us and give us breaks but I couldn’t leave to eat or take a nap or pump without them being asked to leave. Plus there was no where to sleep in the parent lounge. The chairs were quite comfortable but it would have been nice to have a place to stretch out and take a nap like when we were in Edmonton. The patient care was still great of course, and the nurses were exceptionally nurturing and lovely to work with which makes a huge difference, but we missed the holistic approach to care that we had received at the Stollery. So I think since they’re currently building a new facility, Chris and I are going to try and advocate for some changes. It won’t benefit us, but if we can possibly help an already stressful situation be a little more pleasant and manageable for another family in the future we would be happy.
But we are endlessly grateful for everyones work at the NICU! They are the reason our little peanut is alive! However, when you’re exhaustion is mounting, you hit set backs, and you’ve been living in the hospital for nearly a month there are some little things that would make the experience easier on the entire family. Even something as simple as a fresh, un-chipped coat of paint on the walls and a couple plants would make a world of a difference.
Free At Last
The best news however was that James' stats had been consistent enough that he had been approved to have his leads removed! This would be the first time since he was born that he would be free of machines! With him unattached I could hold him and walk around for the first time ever! Literally ever! He still had his NG tube in for evening feeds, but he was doing so well! I will never forget the moment that I picked him up, and looked at my little boy, almost completely free from medical intervention. I held him close, looked into his eyes, and took him for his first walk around the room. It felt like he was finally mine. I walked him over to the windows and let the sunlight wash over us. It was so incredible to share that moment with him. The first time he’d actually been in direct sunlight, looking out into the rest of the world, beyond the beeping machines and crying babies of the NICU. Even the simple pleasure of being able to dress my little guy in his own clothes and do them up entirely, not leaving off arms or whatever else to accommodate the monitors and lines… It felt like maybe, just maybe, the end was in sight. There were still some big obstacles to overcome, particularly with feeding, but a seed of hope, no matter how small, can grow quickly in an expectant mother’s heart.
By the end of the day I was so tired I could barely see straight. I had a monster headache and if I wasn’t going to be at the hospital I needed to go home to sleep. So I took a rain cheque on dinner with my in-laws and had Chris drop me off at home before he headed over himself. Of course this was the first time I had been home with time to do more than just pump and sleep, and since I’m a clean freak I couldn’t NOT clean a little bit before going to bed. Since we’d left shortly after Christmas we hadn’t had the chance to put away a lot of our things and there were still some decorations left up that needed to be put away. The bulk of the decorations had been put away by my brother while we were in Edmonton while he was house sitting/watching our dog Max, but there were a few things to tidy up. I certainly didn’t get it all done but I had started to work on it, got up two blog posts that had been waiting to be posted on my computer for a while, and started to answer some messages. If I haven’t answered you please don’t think I’m ignoring you or that your encouragement doesn’t matter to me. It does! A lot! I just haven’t been able to do much online due to the hospital regulations.
And then it was time to sleep. I crashed hard. But I was hopeful for good news in the morning. I know this is a short post but I want to spend as much time as I can at James bedside, and they don’t like when I take my computer out over there so I had to write as much as I could on one of my meal breaks. Here’s to a new week and hopefully new beginnings.