Doctors and other families who had gone through surgery before us talked about how fast these kiddos rebound but to see it firsthand is pretty amazing. We're so thankful for the team at St. Louis Children's Hospital and Baker's doctors here at home who all helped him have the best possible outcome. His repair looks great with only slight leakage around his reconstructed valves, which they'll continue to monitor for the rest of Baker's life. His heart defect usually only requires one surgery but should the valves worsen as he grows, it's possible he'd require another procedure years down the road but it shouldn't be anything to worry about now.
I posted to Instagram and Facebook during our hospital stay but wanted to document everything here, too, along with about 534256 more pictures... ;) This is long and there are a few pictures below that show his little body with tons of wires and tubes coming out so fair warning if you're not up for seeing those - just scroll on past!
Monday, December 11, 2017
After finally making it to our hotel late Sunday night, I fed Baker one last time and got him back to sleep around 1 AM. He could eat up until 2:30 that morning and could have pedialyte until 4:30. We did a test run of the pedialyte which he promptly spit up so I knew I wanted to fill him up and let him sleep as long as possible before leaving for the hospital. We had to check in at 6:15 and had a long day ahead of us.
Baker woke up around 5:30 and was not a happy camper. He was hungry and we weren't able to feed him so it was tough. We tried to keep him distracted and he actually fell asleep again once we got in the car. The hospital was maybe 10 minutes down the road so it wasn't long before we needed to wake him up again for pre-op stuff like a weight check and getting his vitals taken.
I should have known he'd handle it like a champ but Baker was so incredibly calm. He blew me away. We checked in right at 6:15 and for the next hour and 15 minutes, B was so chill. He didn't cry. He didn't fuss. He wasn't upset.
His brave was showing and I couldn't have been more proud.
It was almost like he knew that we (I) needed him to be strong. Like he knew everything would be okay. It was incredible. Because he was calm, we were calm and comforted knowing he wasn't stressing. It also made it easier to say goodbye when it was time for him to go back to get prepped for surgery.
Letting him go was still the hardest thing I've ever had to do but the way the hospital handled everything and the fact that Baker wasn't crying made it bearable. We had our own private room and instead of having a dramatic handoff at the end of the hallway in front of the automatic double doors, like the ones you see in movies except THIS IS MY REAL LIFE, we were able to hug and kiss him before the anesthesiologist simply carried him down the hall.
We had time to collect ourselves before heading back to the waiting room where we sat for the next 4.5 hours. The hospital uses an app that allows a nurse in the operating room to update the family by sending text messages, photos and videos. We received an update every so often along with an actual phone call from his nurse about every hour letting us know how things were going and what the next steps were. It helped pass the time and was reassuring that we kind of knew exactly what was going on with our little man.
The app was handy because we could add our other family members (parents, brothers, sisters, etc.) so they received the same updates. It helped them stay in the loop and let us focus on Baker and not worry too much about updating everyone every time we got an update. We received some pretty incredible photos and videos from within the operating room, one being of Baker's beating heart after it had been repaired and he had come off bypass. I saw the video and immediately started crying - it was HIS FREAKING HEART and it was BEATING. On it's own. Like it should. I saved the video to my phone and still watch it every now and then.
After a bit, the surgeon came down to the waiting room to give us an update - everything went smoothly. We were moved up to the Cardiac Intensive Care Unit while we waited to see Baker.
It felt like we waited up there f o r e v e r and after Justin finally tracked a nurse down we were reunited with our boy. I had prepared myself for what he'd look like by following other kids' stories and seeing their pictures but it was still overwhelming. We both kind of stood back from his bed, peering through the wires and over the sides until his nurse told us we could touch him.
Music to my ears.
We held his hand and stroked his feet. I cried some more (shocker..) and told him how amazing he was. He was sedated and comfortable. They removed his breathing tube initially right after surgery. Our doctor explained that they try and do this so the child is intubated for as short amount of time as possible. Some kiddos do fine and don't have any issues while others struggle a bit to breathe on their own. After a few hours, the swelling in Baker's throat wasn't going down and because of his "floppy" airway (thanks to the low muscle tone associated with Down syndrome), he was having a bit of trouble so they reinserted his breathing tube. It kind of felt like a setback but it definitely needed to happen to give his little body some more time to rest and start the path to recovery.
They had put him back to sleep and given him a paralytic in order to reinsert the tube so he was definitely out of it afterwards but we knew he wasn't in pain. Poor kid had an IV line in each limb along with a central line up near his right shoulder. His chest tube and pacer wires were coming out of his chest along with his feeding tube, catheter, pulse ox and several other stickers for monitoring.
Justin and I were both able to sleep in the room with him at night which was good because neither one of us felt like leaving him. It was a long day but we were so glad to have him sail through with flying colors!
Tuesday, December 12, 2017
The next morning was hard for me, realizing that he was still hooked up to all of the machines and relying on the breathing tube. I had to keep reminding myself that it hadn't even been 24 hour since he got out of surgery and to give it time. We spent the quiet day next to him in his room while he rested up.
Slowly but surely Baker continued to improve! His chest tube and pacer wires were removed on Wednesday afternoon with talks that they'd remove the breathing tube that night. His labs were all coming back clean and his x-rays looked good.
For every poke and prod and test done, Baker earned a bead for his Beads of Courage. This is an amazing organization that allows kids to tell their story by collecting beads as symbols of their courage during treatment. We strung Baker's beads in a way that tells of his operation and hospital stay and I'm so glad we'll have this to show him when he's older.
By Wednesday night, Baker was continuing to make progress so they decided it was time to remove the breathing tube. He did really well and had a nasal cannula helping supply some additional oxygen.
This also meant we were able to HOLD him again! It was just as wonderful as I had imagined it would be. I mean, he's like legit smiling at me, right?! Happy to be back in mama and daddy's arms!
Thursday, December 14, 2017
By Thursday morning, Baker looked like a whole new kid. You could literally see him coming back to us as the hours passed. Wires were being removed, he was getting weaned off the oxygen and was moved from the CICU down the hall to the step-down unit.
He was also allowed to eat orally for the first time since surgery on Thursday afternoon. He wasn't liking the bottle but took to breastfeeding like no time had passed. I can't imagine nursing with a NG tube down your throat and a cannula in your nose was easy but he didn't seem to mind. After proving he was able to breath on room air, we ditched the cannula and we were one step closer to seeing that sweet face wire and tape-free. We also took this opportunity to give him a little sponge bath and change him into some clothes we brought from home. These side snap tops and leg warmers were perfect for keeping him cozy.
Friday, December 15, 2017
Baker continued to eat well into Friday morning and even got some play time when the occupational therapist stopped by to hang out for a bit.
We also pushed that morning for his NG tube to be removed since he was nursing well. The doctors obliged which meant it was time for another photoshoot...
After rounds on Friday afternoon, there was talk of sending us home the next day. WHAT!? YES. As long as he had an uneventful night, we were outta there come Saturday.
Saturday, December 16, 2017
We woke up early on Saturday morning to Baker's beautiful smile. Seriously, this kid. Again, it was like he knew we'd get to bring him home this day. Never in his life had we seen smiles like this. It was like you could just tell he felt good. You could look in his direction and his face would just immediately light up. It was the best thing ever, ever, ever.
The cardiologist on staff that morning quickly cleared him to be released. Just like that. 5 days after open heart surgery.
We couldn't have packed our stuff faster! We anxiously waited around for our nurse to get our discharge papers and go over a couple of things with us. We were giddy and sooooo ready to get him home.
He was ready, too!
It was a whirlwind and we even made it home in time for Leighton's birthday the next day. Baker continues to do well here at home. We've seen both his regular cardiologist and pediatrician since getting back. He's now officially off all medications, his scar is healing well and he continues to thrive!
It was truly amazing to see him bounce back after such a major operation and I'm still in awe of him and the way he handled everything. We're glad the staff stayed on top of his pain medication, we never once thought he was in pain or agitated. Even once he was extubated and the sedatives wore off, he didn't really whine or cry the entire time. Again, showing off that brave of his...
We sure do love you, warrior boy, and we're so glad you're ours.
 |
| one week post op (December 18th) |
 |
| two weeks post op (christmas day!) |
SO glad he's doing well!
ReplyDelete