Ok, so I know this is long over due, but as any new mum can tell you, things are busy when you're settling in at home! And with the Christmas clean up to do, un-packing from Edmonton, oodles of appointments, and a lack of sleep, I just didn't have a moment to sit down and write out our journey home. So, without further ado, here's a look at those last three crazy days at NICU Winnipeg before finally coming home.
Monday, January 18, 2016
It had been yet another night of little sleep due to pumping and the discomfort of my mastitis, but I was feeling a bit more rested than I had been over the past few days and thank goodness for that. When my mom picked me up that morning to come with me to the hospital I really had no idea what was coming.
One of the major down-sides to being home and not in Edmonton was that I was no longer walking distance from my baby. On top of that, parking is so expensive near the hospital. I was planning on just taking the bus most days but our friend Paul Dawson was extremely generous and let us park at the Bardal Funeral Home where he works. What a blessing to know each day that I had a spot to park right across the street from the NICU and we wouldn't have to worry about the financial burden of meter or lot parking fees.
We got to baby in time for morning rounds and heard the regular updates on his clots, morphine withdrawal, and feeding, but then got some news that I certainly wasn't expecting. Normally, once you no longer require intensive care you're sent to intermediate care to finish establishing feeding before being discharged. But there were no beds in intermediate care (go figure. It's been a recurring theme for us) so they wanted to try something a little different. They were going to pull his NG tube. Great news! It was his last tube! But this meant that feeding needed to be from me or a bottle. They wanted to see how baby would react to exclusive breastfeeding. They wanted to see if he was strong enough to breastfeed or if he would either give up because he was too weak or if he would lose weight because he was burning too many calories in the process. This meant that I was going to room in for at least the next 48 hours. So with no warning at all I was in it for the long haul. I was now with my baby to see how he'd fare in this trial run. If he did well, we would be discharged directly from NICU. If not, well, we'd be there a while longer until a bed opened up in intermediate care for us to finish establishing feedings before heading home.
Monday, January 18, 2016
It had been yet another night of little sleep due to pumping and the discomfort of my mastitis, but I was feeling a bit more rested than I had been over the past few days and thank goodness for that. When my mom picked me up that morning to come with me to the hospital I really had no idea what was coming.
One of the major down-sides to being home and not in Edmonton was that I was no longer walking distance from my baby. On top of that, parking is so expensive near the hospital. I was planning on just taking the bus most days but our friend Paul Dawson was extremely generous and let us park at the Bardal Funeral Home where he works. What a blessing to know each day that I had a spot to park right across the street from the NICU and we wouldn't have to worry about the financial burden of meter or lot parking fees.
We got to baby in time for morning rounds and heard the regular updates on his clots, morphine withdrawal, and feeding, but then got some news that I certainly wasn't expecting. Normally, once you no longer require intensive care you're sent to intermediate care to finish establishing feeding before being discharged. But there were no beds in intermediate care (go figure. It's been a recurring theme for us) so they wanted to try something a little different. They were going to pull his NG tube. Great news! It was his last tube! But this meant that feeding needed to be from me or a bottle. They wanted to see how baby would react to exclusive breastfeeding. They wanted to see if he was strong enough to breastfeed or if he would either give up because he was too weak or if he would lose weight because he was burning too many calories in the process. This meant that I was going to room in for at least the next 48 hours. So with no warning at all I was in it for the long haul. I was now with my baby to see how he'd fare in this trial run. If he did well, we would be discharged directly from NICU. If not, well, we'd be there a while longer until a bed opened up in intermediate care for us to finish establishing feedings before heading home.
This was super exciting because it meant the end was finally in sight! Only a few more days! But on the flip side, I was not prepared to stay at the hospital for the next few days. I hadn't showered that morning because I didn't have time, I certainly couldn't have anticipated packing an overnight bag for myself, and I was nervous because James had literally NEVER had to work for his food longer than a 12 hour stint, and we'd only being doing that for a couple days. How was he going to do? How was I going to do?! I felt serious pressure to make sure I was feeding him enough. They literally weighed him before and after every single feeding to get an estimate on how much he had taken in. It was scary for both of us because James and I were still just learning how to breastfeed together. He'd only been just gone up to full feeds on the NG Tube for a couple days, and we'd only been practicing breastfeeding for about a week at this point. Of course he'd be fussy. He was used to waking up with food in his tummy or at least nutrients pumped into his blood. But I got nervous every time he fussed while I was trying to feed him because a nurse would pop there head in and ask if he was eating and how he was doing and "do you need any help?". Between working through this new process of feeding, the lights, the beeping, the crying, and other distractions, it was kind of a high pressure situation for both of us.
Visit from the Outside
That morning we were visited by someone who wasn't actually a family member! Pastor Martin from Calvary Temple (my parents church - the church I grew up attending but Chris and I attend elsewhere now) came by to visit and pray for us. The support I have received from Calvary Temple, a church I don't even attend anymore, has been an absolute blessing. Week after week they have checked in on us. They've been praying for us as a congregation throughout this process (in services, prayer meetings, listed in the bulletin as a prayer request, etc) and have constantly sent messages of prayer and support. I've never felt such a strong presence of true Christian compassion in my life. Their entire congregation, and particularly the CT Choir, have really touched me and have helped to heal some of the wounds I've carried from past experiences in other places.
After James' noon feeding, my mom and I made a quick escape to The Nest, a local baby/family store, to pick up a car seat cover so we'd be ready to take him home in a couple days. Little did I know that the next time I left the hospital we would actually be using the car seat cover. It was a brief outing since I was supposed to be feeding by demand (when James was giving us the signs that he was ready to eat), but it was nice to get some fresh air and sunshine. My mom even treated me to Starbucks on our way back to the NICU! She knows me so well. ;)
That morning we were visited by someone who wasn't actually a family member! Pastor Martin from Calvary Temple (my parents church - the church I grew up attending but Chris and I attend elsewhere now) came by to visit and pray for us. The support I have received from Calvary Temple, a church I don't even attend anymore, has been an absolute blessing. Week after week they have checked in on us. They've been praying for us as a congregation throughout this process (in services, prayer meetings, listed in the bulletin as a prayer request, etc) and have constantly sent messages of prayer and support. I've never felt such a strong presence of true Christian compassion in my life. Their entire congregation, and particularly the CT Choir, have really touched me and have helped to heal some of the wounds I've carried from past experiences in other places.
After James' noon feeding, my mom and I made a quick escape to The Nest, a local baby/family store, to pick up a car seat cover so we'd be ready to take him home in a couple days. Little did I know that the next time I left the hospital we would actually be using the car seat cover. It was a brief outing since I was supposed to be feeding by demand (when James was giving us the signs that he was ready to eat), but it was nice to get some fresh air and sunshine. My mom even treated me to Starbucks on our way back to the NICU! She knows me so well. ;)
When we got back The rest of the day went about the same as it had the previous days. Visits from family, feedings, snuggles, and trying to gather any information I could from the nurses and doctors.
The NICU here in Winnipeg seemed to operate on a "need to know" policy. If you did ask a direct question, and often times you needed to persistently ask the same direct question, you wouldn't get an answer. And it seemed like they were hesitant to give a straight answer. Prior to this we knew EVERYTHING that was going on while we were in Edmonton. We knew all his scheduled appointments and procedures, any changes to his care... They told us if they changed his dressings! Specialists (or the nurse if we had been away when a specialist had been by) would tell us what they had been hypothesizing about James' predicament. They were big on education too. If it was a new concept they would explain it to us using proper scientific terms so we never felt like they were talking down to us. It also gave us the opportunity to do some research on our own since it hadn't been dumbed down to the point that there were no actual terms for us to use as reference. This was not how it seemed to work here. So even when asking about where and how the "room in" process was going to work I never got a straight answer. It wasn't until I was actually in the room that they told me how it would work.
The NICU here in Winnipeg seemed to operate on a "need to know" policy. If you did ask a direct question, and often times you needed to persistently ask the same direct question, you wouldn't get an answer. And it seemed like they were hesitant to give a straight answer. Prior to this we knew EVERYTHING that was going on while we were in Edmonton. We knew all his scheduled appointments and procedures, any changes to his care... They told us if they changed his dressings! Specialists (or the nurse if we had been away when a specialist had been by) would tell us what they had been hypothesizing about James' predicament. They were big on education too. If it was a new concept they would explain it to us using proper scientific terms so we never felt like they were talking down to us. It also gave us the opportunity to do some research on our own since it hadn't been dumbed down to the point that there were no actual terms for us to use as reference. This was not how it seemed to work here. So even when asking about where and how the "room in" process was going to work I never got a straight answer. It wasn't until I was actually in the room that they told me how it would work.
The First Night
That night, after the nurse change, Chris came with me to settle me into our room. Because of the short notice and him having to work I was going to be alone. Not gonna lie, I was scared. My first night with baby, and I was going to be doing it all by myself. Chris brought me an overnight bag, but we discovered right away that there were no showers. None. So I was going to be going three days in a row without a shower. Oh boy...
The nurse gave me a phone number for me to call on my cell phone if I needed to contact her, showed me how to weigh James before and after his feeds (giving me a piece of paper to record his stats), and off she went. Chris really needed to go home but was super sweet and stayed with me long enough to support me as I gave James his medication for the first time. The Phenobarb was actually hilarious. Apparently it doesn't taste very good and every time I would squirt a little into his cheek he'd gasp and pucker his lips like he'd just sucked on a lemon for the first time! It was so cute! But then I had to give him his first dose of Enoxaparin. I'd given him his first shot that morning (since it has to be given twice a day) and I was required to give three doses under a nurses supervision before we could be discharged. It was not fun. I hate needles. And I hate giving needles to my baby. It never gets easier, but I have to do it.
So with the medication done, Chris gave both of us a kiss goodnight and we were on our own. Just me and baby James. It was a LONG night. I have a whole new respect for single mums. I don't know how they do it. That is not the kind of thing you should do without help. James would not sleep. Between his cries of stress from being in yet another new environment (though let me say, it was the nicest room I'd encountered in HSC. I had a real bed! I didn't get to use it, but I had one!), the withdrawal, and having to work for his food for the first night ever, it was hard for me to calm him down enough to latch. By the end of the night I was completely exhausted. I had been peed on (Chris had forgotten to point James' plumbing in the right direction on his last diaper change and he peed straight up and out... ALL OVER me, the floor, my overnight bag... the works), puked on, and had only gotten 45 minutes of sleep the entire night. After one of his feeds he finally seemed settled so I put him in his bed and laid down. I had closed my eyes for maybe 3 minutes when I thought I heard him choking! I ran over to his bed and he had spit up his ENTIRE feed and was indeed choking. I was in such a panic. He was fine. I was fine in the end, but it was scary! I'd never experienced that before. But we had somehow survived the night. The bad news was, he didn't eat enough. Our weights were entered but he was not eating full feeds. We still had another night to go. At this point we were crossing our fingers that he wouldn't give up on us, seeing as he'd never gone that long without a break.
Tuesday, January 19, 2016
At 8am my NICU nurse came to pick up James to bring him back to the unit so I could have a couple minutes to clean up before heading back there myself. She was a doll and didn't want them to push me out of the NICU before we were actually ready, so she gave James his Enoxaparin while I was changing. I think she did it on purpose to help us out because this meant the earliest they could discharge me would be Wednesday morning after rounds since I needed to get in my last observed Enoxaparin dose. See, nurses really do make a huge difference!
Rounds went the same as always, with vague answers to my questions and the anticipation that his feeds needed to improve over the next 24 hours if we hoped to be discharged. I was so tired. My mom came to be with me for the day and help me stay awake. Since I wasn't allowed to leave her at the bedside alone with James and there were no couches to nap on anyway, she basically just talked to me and nudged me to keep me awake. But the extra awesome thing was that she brought an overnight bag herself! She knew that Chris wasn't able to stay with me at the hospital so she was going to stay with me. What a relief to know that I wouldn't be completely on my own. That alone made my entire day seem more bearable.
In the afternoon James had another blood sample taken for hematology. The last sample they had sent had clotted so they had to try again. The tricky thing about it is that they have to draw 2ml from a baby (not an easy thing to do normally, and extra hard when he's already been poked so many times that you have limited veins to choose from), and it had to be taken 4 hours after his Enoxaparin to check whether the levels were appropriate for the clots. He was not a happy camper. But it had to be done. Then right after this he was given a hearing test since baby's who have been on a ventilator are required to have screening done. It was a neat process where they measured to see if his ear drums were functioning appropriately and then used probes to measure whether the neurological signal was being sent to the auditory regions of the brain. He passed with flying colours and then they did the test a second time because they were trying out some new technology they were looking into buying to upgrade their practice. It was pretty cool to watch, especially since hearing is kind of a big deal to musicians.
But overall things seemed to be going about the same as always throughout the day. But the incredible thing was that James seemed to be getting the hang of eating! We had all been worried he'd be too tired, especially since neither of us got any sleep the night before, but he was doing really well! I don't know if it was BECAUSE he was tired, but he was being much more calm, gulping a lot less air, and eating much more naturally. What a relief to not have to be urging him on all day when we were both so tired. It was a good sign and we were hoping he'd be able to keep it up over night.
More Visitors
At lunch the charge nurse told me my sister was waiting in the parent lounge for me... Sister? I don't have a sister! Well, I do - Julie ;) - but not in a biological sense. So my mom and I headed out. It was HER sister. My aunt works at HSC and brought us lunch and a gift for James! So sweet to see another familiar face. We had the most delicious, warm-you-up-from-the-inside, soup and visited for a while. I knew she wasn't allowed to visit James... but I told her if we were quick and quiet they probably wouldn't even notice. So I snuck her in for a quick peek. I keep forgetting how overwhelming the NICU can be. I'm just so used to it and numb to the experience that I didn't even think to warm her. To me, James looked great! He was tube and wire free! But he was covered in holes and sutures and bandaids and surrounded by some intimidating equipment. Plus with the speakers on the backs of the monitors, every time the baby in the bed behind yours beeps, you can't help but look at your screen because it sounds like it's yours. It's a lot to take in. But I was glad she was able to see him, and that I could sneak her in and out without causing a scene.
Later that afternoon we had our regular family visitors again and then Chris, my mom, and I headed back to the "room in" ward to get settled in. I was anxious based on how things had gone the previous night, but was so grateful to have my mom with me this time around. Medication went easier this time round, and James seemed more settled then he had the previous night.
My mom was my rock that night. I don't know how she managed to stay awake the way she did. She got less sleep then me that night. I would feed James, then she would take him and rock him and to keep him calm while I slept, and we repeated this process all night. I also played a "Mozart Lullaby" playlist from Spotify all night to help keep him calm. That kid really likes music. And because he was more relaxed from being held all night he was eating better too. We were hopeful.
At lunch the charge nurse told me my sister was waiting in the parent lounge for me... Sister? I don't have a sister! Well, I do - Julie ;) - but not in a biological sense. So my mom and I headed out. It was HER sister. My aunt works at HSC and brought us lunch and a gift for James! So sweet to see another familiar face. We had the most delicious, warm-you-up-from-the-inside, soup and visited for a while. I knew she wasn't allowed to visit James... but I told her if we were quick and quiet they probably wouldn't even notice. So I snuck her in for a quick peek. I keep forgetting how overwhelming the NICU can be. I'm just so used to it and numb to the experience that I didn't even think to warm her. To me, James looked great! He was tube and wire free! But he was covered in holes and sutures and bandaids and surrounded by some intimidating equipment. Plus with the speakers on the backs of the monitors, every time the baby in the bed behind yours beeps, you can't help but look at your screen because it sounds like it's yours. It's a lot to take in. But I was glad she was able to see him, and that I could sneak her in and out without causing a scene.
Later that afternoon we had our regular family visitors again and then Chris, my mom, and I headed back to the "room in" ward to get settled in. I was anxious based on how things had gone the previous night, but was so grateful to have my mom with me this time around. Medication went easier this time round, and James seemed more settled then he had the previous night.
My mom was my rock that night. I don't know how she managed to stay awake the way she did. She got less sleep then me that night. I would feed James, then she would take him and rock him and to keep him calm while I slept, and we repeated this process all night. I also played a "Mozart Lullaby" playlist from Spotify all night to help keep him calm. That kid really likes music. And because he was more relaxed from being held all night he was eating better too. We were hopeful.
Wednesday, January 20, 2016
It was morning. I had given James all his observed medication doses, I had submitted our weights from the night, and now was anxiously anticipating rounds to hear the news. The doctors finally made their way to "bed #4 - James August Burns, Born December 28, 2015 - Transposition of the Great Arteries". It's funny how their identification almost sounds like a title, as if you were introducing a guest professor for a university lecture, or a one line authors bio from the back of a novel. We got through all the regular reports, and then came the part I had been waiting for. I held my breath. We got the approval for discharge! I can't begin to tell you how incredible those words sounded to me! I wanted to text Chris right then and there... but there was no wifi and I had to have my phone on airplane mode (*rolling my eyes*). lol. We still had to wait for pharmacy to finish up some preliminary work for us since we couldn't go home without his prescriptions being filled. AND we had to wait for cardiology to run over some things with us (they were supposed to do this on Tuesday but she came during the hearing exam and didn't have time to wait for them to finish). AND we had to get a final assessment from the neonatologist (the one on duty that day was AWESOME! I wish we'd had him the whole time!). AND then once we packed up we had to get a final sign off from the bedside nurse stating that I was taking home the correct baby and that he was properly set up in his car seat (which now had a cozy cover on it!).
It was morning. I had given James all his observed medication doses, I had submitted our weights from the night, and now was anxiously anticipating rounds to hear the news. The doctors finally made their way to "bed #4 - James August Burns, Born December 28, 2015 - Transposition of the Great Arteries". It's funny how their identification almost sounds like a title, as if you were introducing a guest professor for a university lecture, or a one line authors bio from the back of a novel. We got through all the regular reports, and then came the part I had been waiting for. I held my breath. We got the approval for discharge! I can't begin to tell you how incredible those words sounded to me! I wanted to text Chris right then and there... but there was no wifi and I had to have my phone on airplane mode (*rolling my eyes*). lol. We still had to wait for pharmacy to finish up some preliminary work for us since we couldn't go home without his prescriptions being filled. AND we had to wait for cardiology to run over some things with us (they were supposed to do this on Tuesday but she came during the hearing exam and didn't have time to wait for them to finish). AND we had to get a final assessment from the neonatologist (the one on duty that day was AWESOME! I wish we'd had him the whole time!). AND then once we packed up we had to get a final sign off from the bedside nurse stating that I was taking home the correct baby and that he was properly set up in his car seat (which now had a cozy cover on it!).
My mother-in-law came with my truck from home, since that's the vehicle with our carseat base. We took a bunch of pictures, bundled James up, thanked the staff, and we were off. We were finally going home. For real. I was sad that Chris wasn't the one who took us home to be there when baby first arrived in his very own room, but he didn't really have any other options.
It's been a long journey, and it certainly isn't over yet. We've already been to multiple appointments, and will have many more in the upcoming weeks, months, and years. This may not even be the last time we have to go through heart surgery with James. But we have all grown so much through this process. Chris and I both have a few gray hairs that weren't there before, but they were well earned. This is not the end of our story, though I'm happy to see this chapter end. And with these lessons of love, support, patience, and trust in our hearts we look ahead to the adventures we will encounter.
"The best is yet to come..."
"The best is yet to come..."