I know this far I’ve been chronicling our journey with Nolan, and I really thank you all for taking the time to read this blog. I hope that it’s given some of you heart dads an insight into the roller coaster ride that is being a heart parent. Hopefully for those who have gone through it, this blog shows that you’re not alone.
I wanted to take a small break in telling Nolan’s story to talk about being thankful, since tomorrow is Thanksgiving. Yes, it’s going to be a day where we eat ourselves into a coma, watch football, maybe put up a Christmas tree, maybe line up for Black Friday, etc. But as I look back on the last year with Nolan, I really have a lot to be thankful for: and when you really think about it, sometimes the thanks can seem a bit unusual.
While finding out early about Nolan’s condition was bordering on soul-crushing, I’m thankful it happened when it did. In some way I was able to educate myself and try my best to prepare (even though there’s no complete way to be prepared). There are a lot of babies that are born with congenital heart defects who aren’t so lucky. They’re born, look normal – just like Nolan – except they go home within a couple days. And that’s where the trouble starts and before you know it you end up back in the hospital…that is, if you’re so lucky. Many hospitals aren’t equipped to deal with CHD babies, much less recognize them. Heck, the hospital where we originally planned to have the twins doesn’t even have a NICU! So yes, I’m thankful we found out early: thank God for a ultrasound tech with good eyes and a cardiology team that is AMAZING.
I’m thankful for Levine Children’s Hospital: for the kindness showed to us by all the staff. For the bright colors and cheerful decor. Trust me, when you spend 2 months daily in a place, you notice that kinda stuff. I’m thankful for their volunteers, the doctors, the nurses, the CNAs. I’m thankful for the window washers who dressed up as superheros and rappelled down the building the brighten the kids’ day. A Children’s Hospital is definitely not a place you want to be by choice. We had to be there, and I honestly believe LCH is one of the best around.
I’m thankful for my wife, who often juggled so many schedules, complete with multiple pickups and drop-offs, just so we can go see Nolan at the hospital. She continues to be a rock and an amazing mom and wife. When I told people about this blog I heard a few stories about dads who abandoned their families once they found out about a CHD diagnosis. Those guys are cowards and they’re weak. Nothing less. I cannot imagine being a single parent going through this, so I’m grateful that I get to take this journey with my wife by my side.
Now for the crazy part. In some weird way I’m thankful for the fear, the rough emotions, the waiting, the meds, the sleepless nights, the nightmares, the anguish, the worry, the anger, the impatience, the doubt, the exhaustion, the crying….because it reminds me that there’s so much more to life than me and my comfort. I have a job to do and that’s to be a great husband and an awesome dad. Yes, I’m tired…and yes, sometimes I whine about it…but it’s all about perspective. Nolan is surviving and thriving and I thank God every day for it! There are kids and families that are worse off, that are going through tremendous struggles: they don’t know where their next meal will come from or where to call home. Perspective. It’s a powerful thing, and I’m thankful for it. I tell everyone that ever since Nolan was born, my life changed. I have to speak out for Nolan and other HLHS babies because that’s the life I’ve inherited and the life my son will live. And you have to learn to be thankful for every smile, every laugh, every breath, and every waking morning…because it’s the hard stuff that leads you to the great stuff.
Happy Thanksgiving Everyone!
It was so great to have Nolan off the ventilator! He was only getting oxygen via a nasal cannula and he was alert and progressing bit by bit every day. Sometimes I worried about him being in pain, but the nurses assured me that the meds he was on was keeping him in la-la land, but without being completely sedated to the point where he was knocked out. They likened it to being on laughing gas. That was ok with me, I guess. The cool part was that my grandmother came down from Connecticut to visit us: it’s always good to see her, especially since she gets a chance to see all of her great-grandkids. I know not many people get that opportunity. Oh yeah, and the awesome food she makes is a MAJOR perk 🙂
Grandma with Grant:
Grandma with Hudson:
One night I decided to take her to see Nolan in the hospital. She had gone once already to see him, but this time it was just the two of us. This night, though, I really wish my Grandmother didn’t come. We got to Nolan’s room and as usual I asked the nurse how he was doing. She said they were continuing to back him off of oxygen to see how he would do on his own and that he was doing ok. I looked up at his monitor and noticed that his respiratory rate was a lot lower than usual. I pointed this out to the nurse and she was like “That’s ok: as long as it doesn’t go below 20 or so, we’re fine with that.” Then she went out to the hallway so we could have a visit. I can’t exactly remember how long we were there, but I noticed that Nolan’s respiratory rate started to go down, down down, til it was right at 20. Then suddenly it dropped down to 10, then to 6 and I ran to get the nurse and the respiratory therapist. They jumped right into action and I jumped right into freaking out. I was pacing back and forth and was really nervous and it was rough on my grandmother too. The respiratory therapist basically lifted Nolan off the bed and began to massage his back…as long as he was doing that, Nolan was breathing ok. If he stopped, his breathing would putter out. I felt like I couldn’t breathe either, this couldn’t be happening.
Finally one of the doctors came in…she looked like she was 14 years old and I don’t remember ever meeting her. She pow-wowed really quick with a couple other people and then quickly told me, “Ok here’s what I think it is…the sedatives are a little too strong and he’s used to being on the ventilator so he’s relaxing too much, expecting the vent to kick in. We’re going to give him a medication that will pull him out of sedation but not so much that it will put him into withdrawal.” I was like “Wait, what?” And I asked her if she was sure it would work. She told me she thought so, but you just never completely know. The respiratory therapist continued to massage Nolan, I continued to pray and freak out.
An eternity later (or so it felt) the meds arrived and were administered. We all watched, and I really think we were all holding our breath. Ironically the only one seeming to be breathing was Nolan (as he was being massaged, of course). Within minutes, his respiratory rate jumped up, the Respiratory Therapist put him down, and he was breathing just fine. JESUS. That was…just, wow. Crazy. I thanked the female Doogie Howser and the rest of the staff, then gave Nolan a kiss on the head and gave my Grandmother a big hug. Then I watched Nolan like a hawk and his respirations stayed strong. Thank God for a smart, quick-acting doctor and staff. They are incredible and saved Nolan from a definite emergency.
Before I had to leave for the night, I leaned down close to Nolan and said, “I love you…but don’t do that again. EVER.”
Once we got word that Nolan’s surgery went well, all we had to do was wait for an ok to go up and see him. It seemed to take forever, but having our friend Marc there to keep us company helped pass the time. Finally someone came to get us and brought us up to the CVICU to his room. And what I saw shocked me:
My little boy. My 4 pound baby was hooked up to so many machines. I was shocked. Completely numb. I don’t even think I said anything, I just couldn’t. In my mind I prayed and prayed, then prayed some more. Meanwhile the room was buzzing with nurses moving back and forth rapidly, giving meds, checking machines, etc. It was nuts. I couldn’t believe how swollen Nolan was…it didn’t even look like him. And (WARNING: PHOTO AHEAD), as Dr. Maxey noted, his chest was still open and I could see his little heart beating:
It was all so scary. I vaguely remember speaking to one of the nurses, but most of it was some Charlie Brown-style wah wah wah. Something about them doing an x-ray or an echocardiogram to see how his heart function is. I was just in complete shock. I mean it was kinda freaky seeing his chest open like that…ok really freaky, plus I was just kind of amazed at our medical technology and skill: they could perform surgery on a heart the size of a quarter AND they have all these machines that keep him healthy through recovery. Man, I couldn’t begin to list all the meds he was in: pain stuff, sedatives, meds to help with fluids, stuff to serve as feeds, he had a chest tube that was draining lots of gunk, AND he was on a breathing machine.
Besides the shock, I felt really exhausted in that moment. It’s like so much led up to this point and when I walked into the room it was the crushing reality that so much more was ahead. We had this huge mountain to climb together, except it’s like we had to climb it in the dark, since we wouldn’t know what to expect on a day-to-day basis. I had to get used to the new reality: this room would become our second home, and we’d have to get used to the beeping and whirring of so many machines and the visible beating of our son’s heart.
People like to say that “being a man” means being tough. I promise you, Dads out there, the “tough” you’ve known your whole life is garbage when you go through this process. The moment I saw my son like this it sucked the tough outta me. I had to learn what tough really is. And how did I learn that? I looked at that 4 pound baby to lead by example. THAT’S tough.
The nurse who escorted us from pre-op took us to this large waiting area. We had to check in with a very nice lady at the desk, who gave us a number, which would identify Nolan on the big screen on the wall. It showed patients in pre-op, surgery, and post-op. She told us to have a seat and she would give us periodic updates on the hour. Surgery was scheduled to begin about 8 and it was still pretty early. We picked a couch to sit on and tried our best to relax. Once we sat down and had a good hug, we realized how exhausted we were. I mean we hadn’t slept at all. Before I knew it, both of us had dozed off. You know how you get that feeling that someone is watching you? Well I had it and popped my eyes open to see our friend Darren sitting there across from me. Dude scared me to death! I was like, “How long have you been there?” and he said, “Long enough,” which is code for dude you were drooling. Darren is a pastor and an awesome guy, and used his chaplain credits to get in to hang with us, which was really cool…we definitely didn’t ask him to do that.
And you know what? I’m thankful for him. He prayed with us and just was there as a friend. At 9:11am the lady from the desk came up to me, asked my favorite question (“Do you speak English?”) and then told us that the surgeons have made their first incision and everything is going well. Well that was late, but at least they got started. So while we waited and I drank like 40 cups of coffee, Darren entertained us with a bunch of hilarious stories about his father-in-law. I mean laugh-out-loud stuff. I know this is going to sound crazy, but for a little while, it took my mind off of what was going on, and I’m so thankful for that. I like to laugh…as much as possible, in fact, but laughter didn’t seem like it was on the menu this day, but Darren changed that for us. The lady came back every hour to let us know things were still going well.
Eventually Darren had to leave, and Bekah and I moved to a different couch up against the wall. We watched and listened as people received their updates, left to see their loved ones in post-op, and basically sat around waiting like us. I definitely didn’t feel like chatting with any of the other waiters, so I didn’t. Eventually Bekah fell asleep on my shoulder…and I think I might’ve fallen asleep too, because I don’t remember getting updates during this time. Finally after about 5 or 6 hours of waiting, my legs and back were stiff so I decided to get up. I got a drink of water and decided to mosey on over to the screen to see where Nolan was on there. I looked at my sheet with his ID number, then looked at the screen…then to the sheet, then to the screen…and again. Um…his number wasn’t on there.
“OH NO,” I thought, thinking the worst. I could immediately feel my body heat up like 50 degrees. I turned to the lady at the desk and frantically said, “My son’s not on there. Why isn’t he on there?!” She was checking…and I was freaking. I was fearing the worst. She said something like “It probably means he’s out of surgery, I should get a call real soon.” And I was like “Probably isn’t enough!!!” And so I stood there…staring at that screen, arms folded, hoping and praying for Nolan’s number to show up in the Post-Op column. Nothing…nothing…still nothing. God, it felt like hours.
Suddenly the doors behind me opened. I turned around and saw Dr. Peeler, Dr. Maxey, and the rest of the surgery team, still in their scrubs. I sucked in a breath and held it, and waved a feeble hello. Dr. Peeler said “Let’s go talk with your wife” and I said ok and walked across the room on the shakiest legs EVER. I sat down next to Bekah and nervously held her hand. The team sat across from us in a half-circle. Dr. Peeler was the first to speak and said, “The operation went as well as expected, and he’s going to post-op now. Any questions?” And I was like uhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh. Dr. Maxey chimed in, saying everything went well, but that due to swelling and Nolan’s small size, they were unable to close his chest, but that’s not uncommon. He then asked if we had any questions and I specifically remember saying “No…I am just SO happy to see you guys.”
What a relief…Nolan made it! Now we just had to wait for someone to get us and bring us up to his room at the CVICU. During that time, another friend of ours – Marc – came from work to hang with us. It was so good to see him too. And he brought Starbucks! My man! I remember he brought a chocolate chunk cookie and I ate the crap outta that thing, I was so hungry.
Thank God for good friends. Thank God for a great Hospital. And thank God for a great surgery team!
What a day this was. We had to wait weeks after the 20 week ultrasound before going to see the high-risk doctor at the Womens’ Institute and the day finally arrived. We had an early appointment and both had the day off work, so we set off . We got there and everyone was pretty nice: the first thing we did was meet with a genetic counselor, who asked us a bunch of questions about our family histories. Next we settled in for our thousandth ultrasound. This one took awhile, and eventually the doctor came in to look at things himself and even typed out some labels on the ultrasound like “Double Outlet”…whatever that meant. Finally we got to meet with the doctor who said he thought the baby had what’s called Hypoplastic Left Heart Syndrome, which means the left side of his heart is underdeveloped. Whoa. He said he would be handling the delivery of the babies since now they are considered high-risk and our original doctor was not able to do deliveries at the main hospital in Charlotte. He said he’d be referring us next to the cardiologists at the main hospital, preferrably that day. The next thing he said flummoxed me. He said an option for the baby could be “Selective Reduction.” I wanted to put a shoe on him. I was like “NO.” That baby will be born and he will be a BOSS. End of story. He was actually a really nice doctor, he just really got off on the wrong foot.
Anyways, we talked with the genetic counselor again, who worked on getting us scheduled at the cardiologist’s office. She also set up a tour of the NICU and the Cardiovascular Intensive Care Unit (CVICU) at the Children’s Hospital.
We had a lot of time to kill before going to the cardiology appointment, so we decided to have breakfast. We went to a place called Briggs and it was delicious. Why was this important on this day? Because we sat there and decided that, ok they found something wrong. We don’t quite know what the next step is, but they’re going to send us to the people who do know. In the meantime, we should relax, spend time together, and eat. And we did. And it was nice.
On we went to the hospital for our tours. Everyone at NICU was really friendly, but I remembered how dark it was in there…and quiet. I really tried my best not to look at the babies to avoid being sadder than I already was. The next stop was the CVICU: we spoke with a nurse who told us about the floor. I don’t remember much of what she said because my mind was racing, which basically turned her into Charlie Brown’s teacher: wah wah waaaaaah. One thing I do remember is her taking us to a room of her patient. It was a little baby that got out of surgery and he was asleep in his bed. She said “See, he’s doing fine…breathing normal. That’s good. And if you look around, no one here is freaking out, there’s no alarm, no panic. We have it under control.” I would never forget that. I was completely confident in their ability at that point…it was going to be ok in their hands.
Then we had our cardiology appointment at Sanger Heart & Vascular Institute. We sat there in the waiting area, surrounded by photos of kids with heart issues, which is crazy at first. We were finally called back in and briefly met the cardiologist. She was nice enough, I guess, and, and told us we were going to do a fetal echocardiogram. This was basically ANOTHER ultrasound that lasted foreeeeeever. By that point we were so exhausted (my wife must’ve been practically comatose). Once it was done, we met with the cardiologist again. She drew us a very nicely-done picture of a normal heart, then a picture of what our baby’s heart is like or would be like. She did this very matter-of-factly, almost robotically. She didn’t touch much on surgical options and only briefly explained what Hypoplastic Left Heart Syndrome meant. I asked her how often she’s seen HLHS and she just said “It’s rare.” Well rare like what? Sasquatch rare, like you never ever see it? Or rate like, hey we don’t see it much but we know what to do? Eventually my wife started to cry, and the doctor looked nervous. She handed my wife a box of tissues and walked out. And I hated her for it. Despised her, in fact. How dare this lady be so cold? How can she work with parents of unborn sick babies and behave so icy? I was furious, and would harbor those feelings towards her for quite awhile (more on that later).
Once we settled down, we went to the check-out to make a follow-up appointment. Then I heard music to my ears, “Oh that doctor isn’t available next week, would another one be ok?” I was like, “YES! ABSOLUTELY
!” Anyone is better than her, right? (more on that in another post, too).
So our fears were confirmed. Our baby would be born with a congenital heart defect called Hypoplastic Left Heart Syndrome. But what did it all mean? Was he going to make it? What kind of life would he have? What kind of life would WE have? Oddly I didn’t feel as overwhelmingly sad as I did after our previous appointment. By this stage in the long day, we knew something was wrong, and now we just needed to know what was next. Don’t get me wrong, it wasn’t super-joyous either, but I was just looking forward to working with a doctor that WASN’T the one we met today. We drove towards home in disbelief and shock, and picked up Hudson from daycare. Smart move: it’s hard to be upset when that boy is so happy to see you. We definitely needed his smiles and hugs.
At that point I was just thankful for my growing family, no matter what the difficulty ahead may be. I had faith that God would get us through (as mad as I was with Him earlier), and we’d be depending pretty heavily upon that faith.
It’s amazing to re-live that day and all the emotional ups and downs associated with it. All things said I am grateful my wife and I are a great team. She’s so strong…stronger than I am, and I was glad we were fighting the battle together.