Wednesday, January 13, 2016
The promise of coming home was in our minds as we got ready to go to the hospital Wednesday morning. We were rapidly trying to burn through the rest of our groceries so as not to waste anything and ended up eating some odd food combinations throughout the day in our attempt.
Speaking of food, since we had learned James' hospital feeding schedule I had gotten less sleep that night as I adjusted my pumping schedule so that I would be ready to practice nursing him first thing in the morning. Until now I had been giving myself one 4 hour block of sleep and the a 3 hour block following that. It's not actually a full 7 hours of sleep of course since you take a few minutes to set up, pump for 20 minutes, and then 10 minutes to pack/label the milk and clean/disinfect the pumping equipment. That usually leaves 3.5 hours of "sleep" in the first block and 2.5 hours in the second, supposing I fall back to sleep immediately. But to adjust my schedule to line up with his I gave myself on 3 hour block and some more random 1.5-2.5 hour blocks of rest. Needless to say I was pretty tired.
The promise of coming home was in our minds as we got ready to go to the hospital Wednesday morning. We were rapidly trying to burn through the rest of our groceries so as not to waste anything and ended up eating some odd food combinations throughout the day in our attempt.
Speaking of food, since we had learned James' hospital feeding schedule I had gotten less sleep that night as I adjusted my pumping schedule so that I would be ready to practice nursing him first thing in the morning. Until now I had been giving myself one 4 hour block of sleep and the a 3 hour block following that. It's not actually a full 7 hours of sleep of course since you take a few minutes to set up, pump for 20 minutes, and then 10 minutes to pack/label the milk and clean/disinfect the pumping equipment. That usually leaves 3.5 hours of "sleep" in the first block and 2.5 hours in the second, supposing I fall back to sleep immediately. But to adjust my schedule to line up with his I gave myself on 3 hour block and some more random 1.5-2.5 hour blocks of rest. Needless to say I was pretty tired.
We got to the hospital early, like we had the day before to make sure I had time to pump for a few minutes before taking him to the breast. But as it turns out we had a new nurse today who didn't really want to disturb his sleep (since he had just had another rough night). The evening nurses hadn't been able to settle him and ended up having to give him three boluses of a sedative (I can't remember which sedative they said they had to administer but it wasn't morphine since he's been weened off of that entirely. YAY!). Because Chris and I have been spending so much time with James at the hospital we've learned what he likes and what settles him. He is fussy, but if you know the right tricks he settles down REALLY quickly. He's just kind of picky about what will work for him.
He loves a tight swaddle and the feeling of containment. He loves to be in an upright position so he can see people passing by and look around the room, not just up at the ceiling tiles. He loves music or the sound of a heart beat. He hates the process of a diaper change but won't be able to sleep if he's wet. He loves to be bounced, well dropped, about 4 inches up and down (I think it's from all the running while I was pregnant). But with a new set of nurses almost every night they never get the chance to learn him and what he likes so they end up having to sedate him so that he doesn't just DESAT all night and scream bloody murder.
The interesting thing I learned about myself through all this is that I've become a bit of a mama bear without even meaning too. Between learning about the sedative boluses and that I couldn't nurse him that morning I lost it. I just could not handle it. Of course I would never take that out on someone else. I've been on the receiving end of some harsh criticisms throughout my life (professionally and personally) and know how crappy that feels. I also know that lashing out in the moment without having time to cool down and process leaves you at risk of making false assumptions born out of emotion rather than logic. That's why my dad always told me that when writing a strongly pointed email or filing a complaint, wait 24 hours before sending it. Time will be bring clarity and perspective and a much better trade off than acting rashly. You can't take words back but you can chose them wisely.
He loves a tight swaddle and the feeling of containment. He loves to be in an upright position so he can see people passing by and look around the room, not just up at the ceiling tiles. He loves music or the sound of a heart beat. He hates the process of a diaper change but won't be able to sleep if he's wet. He loves to be bounced, well dropped, about 4 inches up and down (I think it's from all the running while I was pregnant). But with a new set of nurses almost every night they never get the chance to learn him and what he likes so they end up having to sedate him so that he doesn't just DESAT all night and scream bloody murder.
The interesting thing I learned about myself through all this is that I've become a bit of a mama bear without even meaning too. Between learning about the sedative boluses and that I couldn't nurse him that morning I lost it. I just could not handle it. Of course I would never take that out on someone else. I've been on the receiving end of some harsh criticisms throughout my life (professionally and personally) and know how crappy that feels. I also know that lashing out in the moment without having time to cool down and process leaves you at risk of making false assumptions born out of emotion rather than logic. That's why my dad always told me that when writing a strongly pointed email or filing a complaint, wait 24 hours before sending it. Time will be bring clarity and perspective and a much better trade off than acting rashly. You can't take words back but you can chose them wisely.
I want what's best for my baby, every mom does! But in my frustration, exhaustion, and desire to take him home I knew I wasn't in a place to say anything. Since James was sleeping anyway, I decided to leave and go for a walk. I took 30 minutes to myself to just wander the halls, talk to my mom, and cool off. I came back and wasn't able to not cry out of frustration when Chris asked me what was wrong.
After helping him understand why the situation had been so upsetting to me I went to go pump. When I got back James was up and I was able to hold him which of course made me feel better.
After helping him understand why the situation had been so upsetting to me I went to go pump. When I got back James was up and I was able to hold him which of course made me feel better.
How To Train Your Dragon
Many mom's and nurses have commented on how James is a little different than a lot of the babies that come through. For only 16 days old he's exceptionally aware, and looks at you with knowing eyes, like he's trying to tell you a story. They say he looks very mature for his age, like he's an old soul. Chris jokes that he looks like Winston Churchill, and he's definitely mastered the deep frown (think Nick Miller from New Girl if you've seen that show) and we've joked that he's like one of those sleepy time dollies. Except when you lie him down, instead of sleeping he screams and crying! And when you sit him upright he has this funny, wide eyed look of wonder. But it really is a bit like training a dragon. He's a feisty one. Before he was born we'd nick-named him Richard the Lion-Hearted because of his congenital heart defect and the fact that he was constantly moving and kicking. And he certainly seems to strong willed at this point.
In rounds we got more good news! He was being switched off of the Heprin to a different anticoagulant that's administered with a needle rather than IV every 12 hours. This sucks because I hate needles and he needs this for the next 3 months, which means I have to poke my baby twice a day. I can't handle looking when they do it to me! I don't know how I'm going to manage poking my baby twice a day :S But the good news is that it meant he could finally have his ART-line removed! And he had been approved as qualifying for the RSV booster. It's expensive so they don't give it to all babies, but heart babies are more susceptible so they usually are approved for the shot.
He was making steady progress and once transport had been able to make arrangements we'd be able to go home! Home to NICU, but home nonetheless. And at that moment it looked like we'd be going home on Thursday! This changed several times throughout the day though. Turns out Winnipeg didn't have any beds available in the NICU so then we'd be staying till Friday or when a bed became available, but then by the end of the day they were saying again that we'd be going home on Thursday. So who knows at this point, but it will be soon! Chris is hoping it'll be Thursday since he has now used up all 9 days of leave and needs to be at work on Friday or he'll lose pay. We'll just have to wait and see how this all pans out.
Many mom's and nurses have commented on how James is a little different than a lot of the babies that come through. For only 16 days old he's exceptionally aware, and looks at you with knowing eyes, like he's trying to tell you a story. They say he looks very mature for his age, like he's an old soul. Chris jokes that he looks like Winston Churchill, and he's definitely mastered the deep frown (think Nick Miller from New Girl if you've seen that show) and we've joked that he's like one of those sleepy time dollies. Except when you lie him down, instead of sleeping he screams and crying! And when you sit him upright he has this funny, wide eyed look of wonder. But it really is a bit like training a dragon. He's a feisty one. Before he was born we'd nick-named him Richard the Lion-Hearted because of his congenital heart defect and the fact that he was constantly moving and kicking. And he certainly seems to strong willed at this point.
In rounds we got more good news! He was being switched off of the Heprin to a different anticoagulant that's administered with a needle rather than IV every 12 hours. This sucks because I hate needles and he needs this for the next 3 months, which means I have to poke my baby twice a day. I can't handle looking when they do it to me! I don't know how I'm going to manage poking my baby twice a day :S But the good news is that it meant he could finally have his ART-line removed! And he had been approved as qualifying for the RSV booster. It's expensive so they don't give it to all babies, but heart babies are more susceptible so they usually are approved for the shot.
He was making steady progress and once transport had been able to make arrangements we'd be able to go home! Home to NICU, but home nonetheless. And at that moment it looked like we'd be going home on Thursday! This changed several times throughout the day though. Turns out Winnipeg didn't have any beds available in the NICU so then we'd be staying till Friday or when a bed became available, but then by the end of the day they were saying again that we'd be going home on Thursday. So who knows at this point, but it will be soon! Chris is hoping it'll be Thursday since he has now used up all 9 days of leave and needs to be at work on Friday or he'll lose pay. We'll just have to wait and see how this all pans out.
Ice Ice Baby
Knowing that we would be going home soon we realized we needed to pick up a cooler to transport our milk. It would have to be a big one though since, well, I've got a decent milk supply, James has only been eating for 2 days, and he's only getting 17ml Q3 (I don't know what the Q actually stands for but it means every three hours). Side note - Annette's note (the lactation consultant) worked! They were feeding him through the NG Tube and only one nurse asked if we could switch to a bottle, and of course I said no since you listen to the lactation consultant! She knows her stuff! Anyway, I had taken up an entire shelf and a half of their freezer with my milk and some people were already making comments about how they were excited for us to leave so they could reclaim the freezer. Chris decided that he would go out and try to pick up a cooler for us while I practiced nursing James... and quite frankly things didn't go well for either of us.
There were lots of people poking around while I was trying to nurse him so James was getting upset and all my boob was doing at that point was acting as a muffle for his cries. Meanwhile Chris was on a wild goose chance going all over West Edmonton Mall trying to find someone who sold a cooler that held more than a couple sandwiches. Neither of us was having luck. So I'm on my phone texting Chris and my mom, trying to figure out if any of my parents friend could possibly drive him to a Canadian Tire (Chris gets motion sickness on the bus and didn't want him to take a million buses if he didn't have to) and trying to feed my baby at the same time. My nurse was giving me stink eye for texting rather than giving my baby full attention, and when I explained what I was doing one of the unit nurses tells me not to worry about it... I was confused and asked what she meant. Turns out she'd already packed all my milk into two large boxes and covered them with ice so that James' transport team could fly it back to Winnipeg for us. Wait. What?! Literally everyone we had talked to at this point (social workers, nurses, even other parents) had told us to buy a cooler because they don't let you send it with transport! And now they'd already arranged for it to happen! I was so confused, but relieved. Chris was a little upset because he'd been all over West Edmonton over the past 2 hours and wanted to be with us at the hospital. BUT it all worked out in the end. We'll see if it actually makes it on to the transport plane when we leave, but for now things are taken care of.
For the record, when it was just me and James we got the feeding thing figured out. And when we tried again that evening there was no fussing, he knew exactly what to do and went for it immediately! Now that's a win!
Coffee Hour
Every Wednesday, the Stollery social workers host a family coffee hour. They offer free Tim Horton's coffee and timbits and the opportunity to chat with some other parents. Chris was a little out-numbered this time around because apparently this week only mom's decided to show up. We had made small talk for a while with the people who were there and I casually mentioned my frustration with how I know to settle my baby but new nurses didn't have this advantage. One of the regulars from The Pump Room Girls club (the one who had dubbed me "Miss Glorious") suggested I make a care plan. "A what?" "A care plan. I'll show you mine after this so you can make your own." Essentially, it's a sheet of care instructions you tape to his monitor that help new care workers know the secrets to what makes your baby tick! How had I not thought of this myself?! Game changer! We don't have one printed yet but we're going to print it as soon as we get home so the team at NICU Winnipeg have an advantage in working with our little trouble maker.
LCS Fantasy League - League of Legends Championship Series
Ok, I have never done a fantasy league ever in my life. Not for football, or hockey, or March Madness; nothing. But my friends and Chris kind of talked me into joining their fantasy league for League of Legends (that online game that I play because my husband loves it so much lol). Honestly, I didn't even know what LCS stood for (even though I'd heard the term used a million times) but I was willing to give it a try. Chris explained to me how it all worked, and since I had watched some of the professional games last season I did have a few, albeit uninformed, favourite teams and players. Learned some picking strategy from Chris, did a little bit of research on my own before picks, and we were off to the races. I don't really know what I'm doing but I'm willing to give it a try. How this connects to Wednesday's update is that we had to be back at the hotel for 7pm to make our picks. Random, but there it is. lol.
Last bit of random fun-ness yesterday was that one of the dad's from PCICU, who lives in Winnipeg, comes to the hospital every day wearing Saskatchewan Roughriders gear. So when my mom asked if I needed anything from home (since my cousin Kevin was going to be able to bring us some things when he came back for second semester) I had to make sure she sent me my Winnipeg Blue Bombers t-shirt! Not only did I have fun poking at the other dad, we also found out that one of our charge nurses in NICU is a CFL ref! Random and so much fun!
So now we wait to see what Thursday brings. Maybe we'll get to come home, maybe we won't. Only time will tell.