If you have other kids, a major challenge when having an heart baby is being as much of an all-inclusive parent as possible. In our case, the twins were both in the NICU and our oldest was with a variety of friends and family early on. What made things crazy was after a few days, Bekah was discharged from the hospital, but obviously our twins were going to stay there. This made things really difficult because we wanted to be at the hospital, and now we’d have to drive 30+ minutes to be there.
It was my wife’s awesome idea to go do something fun with Hudson since we had both been M.I.A. for the whole week. At first I was so-so about the idea since I didn’t want to miss anything with the twins while they were in the NICU, but I didn’t want Hudson to feel left out. As the older brother, he had a big job to do, but he definitely needed some attention too. So the plan was for Bekah to head down to the NICU for the day and I would do some fun stuff with Hudson before going to the NICU later in the day. That sounded like a good plan to me, but I couldn’t decide where to take Hudson. I did some scouring on the interwebz and found the NC Transportation Museum, which is about an hour from us and featured a lot of trains, which is one of Hudson’s obsessions. Even better, I found out you can ride one of the trains with a visit from Santa! So I ordered tickets for the both of us and the next day woke Hudson up and told him I was taking him somewhere special, but that it was a surprise. As most 2 year olds would be, he was super-excited.
We hit the road with enough time to get there for our scheduled train ride. The whole way Hudson kept asking where we were going and I kept telling him it was a surprise, which kept exciting him. I have to tell you, it was a welcome distraction from everything that had been going on and I was really happy to spend time with Hudson. As we got closer to the museum, we got off the exit and went over a few train tracks before pulling into the museum grounds. Hudson was happy about all the train tracks and then said, “Daddy, I wish I could see a train.” I parked the car, turned around in my seat and said, “Well guess what buddy…you’re going to ride on a train!” And his reaction was PRICELESS. He gasped loudly and had this HUGE smile on his face. I’ll never forget it. Then I told him “Oh yeah, and you’ll be riding a train with Santa!” and he went NUTS.
We got out and picked up our tickets and looked at some of the trains on the grounds before our train arrived. Hudson was about to explode:
The conductor helped us aboard and we found a seat before our tickets were punched. As the train started, Hudson was the happiest I’ve ever seen him.
Finally they announced Santa was on his way, and he arrived to the train in this old-school police car. Hudson got a candy cane from Santa’s elves and got to meet Mrs. Claus before the big man himself showed up.
He asked Hudson what he wanted for Christmas…Hudson, being Hudson, clammed up and said nothing lol. I started to talk to Santa and Mrs. Claus about Hudson’s new brothers, and finally Hudson opened up and chatted a bit. Santa gave Hudson an orange, which is apparently a tradition from the depression era: kids would see Santa on a train and he would give them a candy cane and an orange. We spent the next few minutes riding the train and then exploring the museum. Then we went to Steak n Shake for a yummy lunch before heading back on our way. While I was there, I got some good news: Grant was going to be going home! So instead of heading back to the house, I was headed to the hospital so Hudson can meet one of his brothers for the FIRST time!
I gotta tell you, it was an awesome day. Hudson’s joy brought me joy and it was good to get into the Christmas spirit…especially since the thought of Christmas barely crossed my mind that week. And to be honest with you, I think I got more out of that little trip than Hudson did. It was refreshing and I just really needed it. It’s always going to be a challenge to balance the needs of a heart baby with those of your other kids. The only advice you can offer is just try your best. You’re going to be exhausted, you’re going to be emotional, you’re going to be frustrated. But never forget the other kids: take time out to do special things with them and make them feel special too.
One day I came down to the NICU to see poor Nolan in his little bed, with this bright light shining on him and this weird mask covering his eyes. The nurse said Nolan had some jaundice, which is typical of babies who are born a little early, and the light was called a Bili Light, which was a treatment to help the jaundice along. The light had to stay on, and so did the mask, until they were happy with his tests. Grant had some jaundice too, but not as much as Nolan, because he used the Bili Blanket, which was this funky light blanket that would be the envy of EDM fans worldwide. And he only needed it for like a day. Nolan had his for several days. It was pretty depressing because the mask meant you wouldn’t see his little eyes and it almost made him less human, if that makes sense.
Day after day, we’d come to the NICU and see Nolan under that light. Occasionally they’d give us a short break to hold him or just love on him a little bit, but mostly it was hands-off, talking-only stuff. It sucked. I knew he needed it, but it felt like he was making zero progress. I mean heck, isn’t it enough he had a heart defect? Now he has to be all covered up, just laying there to be poked and prodded. It made me feel awful for him. For possibly one of the first times (and definitely not the last), I wanted so badly just to be able to fix him. I would’ve done anything. Guys are supposed to want to fix things, and here I was helpless. Meanwhile, Grant was just a few feet away and he was able to wear clothes and be held. While Nolan only had our voice…
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?
After receiving my scrubs, I went into the nearest bathroom to change. It’s hard to change clothes when you’re insanely nervous, and I swear I almost fell over a few times. The scrub pants went on, but the top they gave me was way too small…it was like Fat Guy in a Little Coat. So I stepped out and asked for a bigger size, which seemed to bother the nurse, but whatever. This one fit much better. I got to sit with my wife for a few minutes while the nurses called the high-risk team and the cardiac team. Then I was told the time had arrived and that Bekah would be wheeled away. I walked with a nurse down another hallway: she opened a closet and told me to put my belongings in there, then she guided me to a chair and said sit and wait til I come get you. So I sat and tried to relax…yeah right. I think I must’ve been sitting there for 20 minutes, maybe more, and the longer I sat, the more nervous I got. Thoughts started to jump into my head like: what will Nolan’s birth be like? I’ve heard about some HLHS babies looking blue when they’re born, will he be blue? Will he be breathing? Will he be ok? Will I ever get the chance to hold him or will I have to wait til after surgery? And the more I thought on these things, the more of a wreck I became. I prayed silently, then prayed again…then again. Finally the nurse came to get me, and on wobbly legs I walked into the operating room for the C-Section, which had already begun. And oh God, I did not want to look! Luckily I was spared a view of it all by the bajillions of people in that tiny room!
There was the surgery team, nurses, anethesia, a NICU team, a cardiac team, a respiratory team, and on and on. They pulled up a seat right by Bekah’s head, which allowed me not to see what was going on. I thought she was asleep, but then she turned her head to look at me. I told her I loved her and that she was going great. Meanwhile the doctors are all casual like “So, did you go to the Christmas party last week?” It was hilariously surreal. Every now and then my wife would wince from the pressure they’d be putting on her and I must’ve asked a hundred times if she was in pain. She was not, but my nervousness didn’t help things. I knew Nolan would be the first one delivered and as they continued to work, I just kept trying to prepare myself. FInally at 5am on the nose, I heard the doctor call out “Delivery!” and the nurse called the time and out came a baby. And that’s when I think I stopped breathing, just holding my breath to see how this was going to go….please God let it be ok. Nolan came out the typical weird purple like most babies do, and he immediately turned a nice pink and cried his little head off. He was SO tiny: about 4 pounds 11 ounces. The nurses ran their quick little tests and no one seemed to be freaking out so I let out my held breath. A nurse asked if I wanted to come say hello, and I walked over on jelly legs. Even up close he was still so small…but he was crying and looked so….normal, except that his little chest was heaving up and down pretty hard, almost like it was sucking in. I pointed at it wordlessly and the nurse said it was ok, no worries. So I leaned down and I said “Hey Nolan, it’s Dad…you made it, and I love you.”
An eternity went by before the doctor called out “Delivery!” with a time of 5:02. Wait, only 2 minutes went by? I swear to this day it felt like 45 minutes or so. Out came Grant at just under 6 pounds and he was pretty pissed to be out of his comfort zone, and he let us all hear it. I went to say hello to my cranky-pants son and I told him how much I loved him too. I went back to Bekah who was asking how they looked and I said “They’re beautiful.” and she asked specifically for Nolan and I said “He looks great, I’m amazed.” Then an awesome, unexpected thing happened: one of the nurses walked up and said “Would you like to hold Nolan?” I didn’t think we’d get to hold him…we heard so many stories about heart babies being whisked right to NICU or to surgery, and we didn’t know what to expect. But I quickly said yes. The nurse swaddled him up and said I could hold him just for a moment so he doesn’t get too cold, then she handed him to me. He was SO small…especially compared to the 8 pound 12 ounce behemoth that was Hudson. I smiled and told him I loved him, then turned to Bekah and said “Look buddy, it’s Mommy!” The next moment is one that gets me every time and is one that I’ll never ever forget. My wife was still on the operating table getting closed up, so she could only really move her head, so I held little Nolan up to her, so she could nuzzle up against his cheek. In that moment, everything was right in the world, everything was love.
Next we got to hold Grant, who was still a little cranky, but calmed down once he got to me. We were lucky enough to love on him some more, which was awesome. And I know he responded when he heard Bekah’s voice. Once I gave Grant back, the only thing left to do was sit and wait…and watch. I would walk up and talk to them…sometimes I would observe. Then it got a little weird: one of the nurses put a little oxygen mask on Grant. I was like “Um, the other one’s the heart baby” and she said, “Oh that one’s fine, this one’s just having a little trouble getting some of the gunk out of his lungs, so we’re helping him out a little. Nothing to be scared of.” So then the little NICU incubator box thing came in and the team prepared to put Nolan in there and take him away. I said my goodbye to him, for now, and was very sad to see him go. Then another box came in for Grant…they were going to take him down to continue to assist with his breathing, but again they said, no major concerns.
The doctors finished up with Bekah and we were wheeled into post-op, where we waited for a long while before going up to a room. It was weird, though: two babies born and none were with us. So I tried to keep the mood light by telling Bekah how terrified I was in that room and how much I tried to avoid looking at the procedure. We had just been through a whirlwind and I was exhausted, I couldn’t imagine how my wife felt. Now we were just on countdown until we could see our babies again: