It was starting to look more and more like Nolan was getting ready to be sent home. This long portion of our journey would soon be over! But hold up, not yet. We had to complete…THE CHECKLIST. We were presented with a discharge checklist of things that we needed to learn, perform, and complete prior to Nolan being allowed to go home. This included things like learning how to draw and administer his meds via the G-Tube, sitting him in his car seat attached to a sat reader for 30-45 minutes (the equivalent of a drive home), learning the CHAMP program, setting up his feeds via G-Tube, learning infant CPR, and spending one night at the hospital completing all his care. Some of the tasks were pretty easy: the CPR lesson came in a packet from the American Heart Association that had a little practice dummy and a DVD to watch, then a nurse reviewed it with us (the good thing is we got to keep this kit so we can share it with people who would dare to watch Nolan).
Some of it we completed separately due to our schedules. The one thing that got me nervous a little was drawing meds. I was really wanting to pay good attention so I didn’t mess things up. I checked, re-checked, and checked again before administering the meds. Nowadays I’m a beast at drawing meds. Once we got comfortable doing everything else, including feeds, it was time to schedule a day to stay over at the hospital. I arranged everything with work, but honestly we weren’t looking forward to it as much. Not because Nolan was on continuous feeds and we’d need to prep his formula, or that we’d have to remember when to give his meds. It’s because his room at Progressive Care was TINY. It had one little couch along the wall that was no more than about 6 feet long. There were 2 of us. I’m over 6 feet tall by myself. So I let my wife sleep on the couch and I had the pleasure of sleeping in a rocking chair…yeah, that sucked. Big time. But aside from some chiropractic issues, the night went well and it was good to see everything on THE CHECKLIST signed off. The next step was to wait for doctors’ approval to send Nolan home…oh the suspense.
If you have a CHD baby, whether it’s HLHS or something else, you’re going to become really, REALLY familiar with an Oxygen Saturation monitor, aka O2 Sats, aka Sats, aka Pulse Ox. Oxygen saturation is a measure of how much oxygen the blood is carrying. If you hooked up a healthy adult or child to a sat reader, it will show the oxygen saturation as at or very near 100%. With Hypoplastic Left Heart Syndrome, this will not be the case. When Nolan was in NICU, I didn’t know anything about all the numbers on the monitor he was hooked up to. The nurse told me all about it: blood pressure, heart rate, and oxygen saturation. Sat rates are really important for heart babies, obviously: if they get too low, their breathing gets labored and their color can start to change. I remember in NICU that Nolan’s monitor was set to go off once his sats were below 75. And man did that thing go off…it’s an all-too-familiar sound to heart parents: boong…boong…boong…boong….BING…BING…BING…BING. And then you freak, and maybe the nurses come a little quicker, and typically everything is fine. The sat monitor used to make me nuts until one of Nolan’s doctors finally told me that the sat reader isn’t always an exact science: it may show low sats but that doesn’t always mean low sats: you have to look at his breathing and color. If it’s reading his sats at 60% but he’s breathing normally and his color is good, then it’s ok. Just give it a minute and we’ll see. Sometimes, though, it is very serious.
So here’s another reason why reading sats is important: IT SAVES LIVES. How? It can really catch CHDs in undiagnosed babies before they leave the hospital. Imagine this: not every family finds out their baby has a CHD during the pregnancy phase. That’s terrifying. Even worse, some families never find out their child has a CHD and the baby dies shortly after birth or in one of those terrible sports-related deaths you read about in the paper. That’s even worse. Not every hospital is equipped with a NICU, much less a staff that can adequately handle a CHD. Many kids are transported to hospitals hours away…so we’re lucky to have one of the best right here. Even so, a great way to find out about a potential CHD and work on getting help is through pulse ox screening for EVERY baby. This is a $5 test that takes like 5 minutes. That’s it. The crazy thing is, not every state requires mandatory pulse ox screening for every baby born prior to discharge. That’s changing, though, and it’s AWESOME. Think about how many lives can be saved with mandatory pulse ox screening across the country? I can’t imagine what it would be like to find out just after birth about a CHD, but I think it’s worse to never know and then lose your loved one because of it.
So how does mandatory pulse ox screening become a reality? With you! Go to this site: http://pulseoxadvocacy.com/current-legislation/ and see if your state has passed a pulse ox screening law. If not, you can also find out how to contact your local lawmakers. Be serious about this: contact them. Saving these lives starts with YOU: so show that you care and do it. This law passed in NC and I was thrilled thanks to many heart parents who are fighting for their babies and those who are to come.
Once Bekah was out of recovery, we were moved up to a room on the maternity floor of the hospital. It was weird because we were up there with no babies. Lots of time went by. We realized how tired we were: I mean we’d been up since 2:30am! So I fired off some text messages to people, updated my job (it was about 8am by this time), and then we decided we might as well rest. We both managed to get some sleep before waking up in hopes we’d be able to see our babies. I finally decided to call the NICU to ask if they could be seen…they said yes. The unfortunate thing was that I had to go alone, since Bekah wasn’t able to get out of bed yet. So I walked to the nurse’s station with the all-important question: how do I get to the NICU? Man, those directions were bonkers: it was like go down 2 floors, take a left, then a right, then a right, then immediate left, then climb a mountain, shoot two free throws, eat 3 hot dogs….ok I’m exaggerating a tiny bit, but it was pretty crazy at first.
I managed to find the NICU Nurse’s Station and I introduced myself. I was told to fill out a form indicating that I didn’t have the bubonic plague or anything like that, and they gave me a nifty Levine Children’s Hospital lanyard with badge holder to hold my parent badge and a list of NICU phone numbers (really helpful). I was instructed on NICU procedure: first check in at nurse’s station, then go to family waiting room where I’d have to do a 2-minute hand wash before putting on a yellow plastic gown, then I’d go out another door so I can be buzzed back into the NICU area…THEN I could see my boys. Now this is very important…if your baby ends up in NICU and you have to do the 2-minute hand wash, be sure you have a good bottle of lotion in your hospital overnight bag. Seriously. I’m not even talking ashy knuckles here, but when you hand wash so much at first (you visit, then your family comes so you wash again, then more family comes to see the baby so you wash again and again and again) your hands will BURN. I know mine did, and it was horrible, I have no shame in saying that cuz it sucked, big time. I couldn’t even put my hands in my pockets…and God forbid using hand sanitizer…WOOOO BURN. So yeah, lotion up! Eventually it gets better: I used Burt’s Bees hand salve. I know, some of you are like “So unmanly!” but just you wait.
So back to it. I walked into the NICU and it was sorta like I remembered it: dark and quiet. I took a step inside and realized that I had seen my twins for such a short amount of time that there was no way I’d be able to know them by sight, so I didn’t know where to go. Luckily a nurse was there near the door and once I introduced myself she directed me straight ahead, where two little beds with heating elements were about 15 feet apart. My boys. I was happy to see them, but it so pained me to see them both there. First I went to Nolan, again afraid that I didn’t know what to expect. He was pretty zonked out looking all cute as if there was nothing amiss. Seriously, if you looked at him, he looked so normal. Amazing. His nurse came up and introduced herself and gave me an update: they did an echo on him right after birth, and – SHOCKER – he has HLHS. So she introduced me to his monitor, which displayed his pulse ox, heart rate, blood pressure, etc. She said he was doing pretty well but wasn’t doing the best with bottle feeds, which is fairly common in CHD babies. I got to spend time with the little man and hold his tiny fingers and toes and talk to him. It was actually pretty soothing there in that quiet place. I asked if a cardiologist had been by and was told no, but that the nurse was fetching the NICU doctor to speak with me. While I waited, I walked over to see Grant, who was also happily asleep. I did notice, though, that he had a little oxygen still going in through his nose and this big (for him) bandage on his chest. Grant’s nurse came over and introduced herself and said that it looked like Grant’s lung had a buildup of fluid and had a little burst, but it was nothing major and they drained it. That threw me for a major loop because here I was expecting one medical issue, but with Nolan…and Grant had one too? The doctor finally came and said something I hear A LOT at the hospital and it pisses me off, “Hello Mr Perez. Is English a good language?” My reply, “What if it isn’t?” to which he laughed. I was not amused.
Luckily for him, though, he was a nice guy and I liked him. He also confirmed that Nolan has HLHS and that the team at Levine Children’s Hospital is the best around. He also verified the info on Grant’s lung, saying he would be just fine aside from a tiny bit of jaundice. I didn’t have any other questions for him aside from asking when I would see a cardiologist and he said he’d check on it. Otherwise I Just wanted to spend time with the boys. I was a bit sad, though: I didn’t get to hold them and didn’t know when I could, and I wasn’t happy about the fact they were in the NICU in the first place. They were getting fantastic care, that’s for sure, but I wanted nothing more right then to have two perfectly healthy babies and be worrying about silly things like fitting them in the car. And it sounds stupid, but I was overly concerned with making sure I spent equal amounts of time with each boy. So I’d walk to Nolan and sit on this high rolling chair and just talk to him. Then I’d go over and do the same for Grant.
It wasn’t until much later that I was able to take Bekah down in a wheelchair to see the boys. By then it was a pro at getting to the NICU. And it was really nice to see my wife get to interact better with the boys, even though she couldn’t hold them yet.
A big question hung in the air, though: what would cardiology say? Will his surgery be tonight? Tomorrow? Next week?