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:
With two babies taking up space in her tiny body, Bekah was going through lots of discomfort, particularly at this stage in the pregnancy. Sleeping was tough and sometimes the only place for her to get comfortable was on the couch. So on the night of December 9th, 2012, I went to bed and was pretty much out like a light. I vaguely remember at one point during the night, Bekah came upstairs to bed. I was pretty much hogging the whole bed, so she got me to move over. I draped my arm over her and went right back to sleep. At 2:30am on December 10th I was awoken by my wife saying “Oh my God…MY WATER JUST BROKE!” And I FLEW out of bed. We already had a bag packed, so I had to make my best attempt to look non-homeless and then roll out. Meanwhile water was just EVERYWHERE…it just kept coming, it reminded me of the same scene from the Coneheads movie (yeah I went there). My mom came over to stay with Hudson and off we went.
Now CMC Main is about 30-40 minutes from our home, depending on the time of day and traffic. At 3am, though, it was a breeze…and I was hauling. I’m glad it was dark out, because my knuckles were probably bone-white from holding the steering wheel so hard. On the way there we were trying to figure out how things were going to proceed. I remember being told that there was now valet parking for expectant moms, but you KNOW there wasn’t gonna be no valet sitting out there at 3am. The good thing, though, is that we’d been through this before at the same hospital. The difference was Bekah’s water didn’t break, they did that at the hospital, so this craziness was new for us. I pulled up to the hospital, ran in, and frantically told the sleepy-looking guy at the front desk that my wife’s water broke. He snapped into action, grabbed a wheelchair, and went to get my wife out of the van while the half-asleep security guard made my visitor badge. I ran back to the van so I can park it, grabbed our bag, and ran back to the hospital….my wife wasn’t there. She was already upstairs…somewhere. With Hudson, they took us both up together…but with Bekah being Niagara Falls, this was different. I asked the sleepy security guard what floor they were on…after some deep thought, he finally got it right and off I went. Problem was, no one told me where to go once I actually got off the elevator. ARGH! So I walked to the nurse’s station and told them my wife was just brought up. The nurse said, “Oh she’s probably in triage: just go down this hall, through the double-doors, take 3 lefts and a right, then halfway down you’ll see a door with a keypad on it…just knock.” I was like WHAT?! This is the hospital, not the Legend of Zelda, I’d get lost with all those turns and whatnot.
Luckily, though, I found the door….so I knocked. And knocked again. A nurse poked her head out the door, Wizard of Oz-style, and asked if I was the dad. I said duh, and she told me to wait out in the hallway. So the only logical thing to do at 3:30am in a hospital is aimlessly pace in the hallway. Oh, and text my best friend, who luckily lives in California, so the time-of-text wasn’t too brutal. I figured they were probably getting some monitors set up so they can keep an eye on things until the main show was ready to begin. That sounded like a good plan, right? After like 20 minutes, the door opened and the nurse let me in and my wife was in a small triage area and they were monitoring things. Yay, I was right! That is, until the nurse gave me some scrubs and said “Here Dad, put these on.” And I was like “OH CRAP, this is happening now!”
TO BE CONTINUED…(dun dun dunnnnnnnnn)
We, or should I say my wife, had a ton of appointments over the following weeks: regular OB appointments, appointments with the high-risk doctor, appointments at the cardiologists office. Whew. Unfortunately I didn’t go to all of those since I was hoarding all my PTO time for work so I can take off as much time as possible once the boys were born. A lot went on during this time, too. First, I applied for FMLA through my job so my job can be protected while I was out with the babies. This was pretty promptly denied since I was with the company for 6 months, not an entire year. That was pretty absurd, but considering all we were about to be facing, it wasn’t too major. I spent my work time trying to prepare for the time I’d be out: since I was the only one who could do my job, I needed to find someone who would be able to do it while I was out, which was pretty tough work.
I remember one morning being in a painfully boring meeting while my wife was at an appointment nearby getting the babies’ heartbeats and whatnot checked out. At one point she sent me a text saying that they had a hard time finding Nolan’s heartbeat and they were sending her to the adjoining hospital for an additional look. Well I freaked, and without saying anything I gathered my stuff and bolted out of the meeting. Thank God I work about 5 minutes from that particular hospital, so I hauled my way there and tried to find Bekah. I got there and she didn’t seem worried, meanwhile I was trying not to piss my pants. She tried to tell me I didn’t have to be there but I wasn’t having any of that. Then the nurse came in and told me this was just an added precaution they do pretty frequently: if the doctor’s office can’t find things quickly, they just send you next door to the hospital where they can take their time and use stronger equipment, that way other appointments don’t get held up. OHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH. I get it now. Oh well, stupid me! At least I got to spend some time with my wife in the middle of a work day, which was really nice.
So at one of the appointments with the high-risk doctor, he decided we were far enough along to begin discussing a C-Section, since BOTH babies decided to do somersaults in there and they were both breached. You see, til this point they wouldn’t just let us pick a random date, take the babies out, and then treat Nolan. The goal was to keep them in as long as possible so their lungs can develop fully. The doctor looked on his calendar and chose one date, a Monday I think, to do an amnio test to see how the babies’ lungs were doing. If it came back positive, the C-Section would be held the next day. So this was it…we had a date. We still had something like 3 or 4 weeks til that date, but it was something concrete as opposed to “Well, they’re due at the end of the year.” It was crazy, but the real craziness was only just beginning. We had so much to do: who would watch our oldest while we were at the hospital? Who would watch the dog? How am I gonna deal? AHHHH!
As I mentioned in a previous post, I did NOT have a good first experience with our initial cardiologist. So I was absolutely thrilled when she was unavailable and we had to see a different doctor for our second cardiology visit. The first thing he did was sit down and go over everything about Hypoplastic Left Heart Syndrome from the beginning…in simple terms. He said that Nolan’s heart was structured differently (what’s called a Double-Outlet Right Ventricle), which would be helpful for him. I was shocked, we never heard that in our first meeting with Dr. Doom (imagine that). He also said these words: “We have some of the best surgeons you’ll find for this…we know how to treat it, and we’re successful at it.” WHOA. What a turnaround! We went from Welcome to Depressionville, Population YOU….to HOPE! It was like suddenly we had a breath of fresh air, and I immediately felt more uplifted.
He had us do another fetal echo, and he came in the room multiple times to guide the tech towards things he wanted to see specifically. Afterward he met with us again to confirm everything and talk a little bit about future appointments. Then he personally walked us to check-out so we could make an appointment to meet with the surgeon who would be doing Nolan’s surgeries. Wow…that’s service. You know, I can’t say enough how much it meant to have a fresh view on things at this stage in our journey. The first doctor made it seem hopeless, the next doctor made us feel like they knew exactly what to do. And when your world has become so fragile, that’s big.
So I encourage you, find the doctor you like. Find someone who speaks at your level, not down to you. Chances are, wherever you are, there will be a few cardiologists available: try them all if you want. Seriously. You will be seeing this person A LOT. If they give you crap, you’re going to have to deal with their crap for a LONG time. So make it worthwhile for everyone. I encourage you to seek out other heart parents in your area and flat-out ask them who they like and why…I promise you they’ll be happy to tell you. It’s YOUR responsibility to ensure the best care for your kids…so do the legwork now.
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.
Until this stage in the game, my wife’s pregnancy had been going pretty well: we had all the standard appointments, the babies were growing well, we liked the doctor. Then came our 20-week ultrasound, and the day that would really change our lives forever…
I was looking forward to seeing the boys, as always, and this was the big ultrasound where we’d get to see them more than usual. The ultrasound started normally, with the tech chatting with us and showing us everything about our two boys. To this day, I really can’t remember why, but my wife mentioned how her sister’s daughter was born with a heart defect. She and the tech chatted about it briefly as the tech began to look more closely at the heart. Baby B’s heart was fine, but as soon as she began looking at Baby A’s heart, all the friendly chatting stopped. In fact, she stopped talking altogether.
As I mentioned before, pregnancy terrifies me. And those moments of silents felt like eons, and I began to feel a chill then a cold sweat coming on. I got really, really nervous. Meanwhile the tech said, “Sorry, I’m just trying to concentrate a little harder here.” I knew by her silence that something was wrong.
We went to meet with the doctor, whose often joking tone was very somber and serious. He said the babies are growing fine, Baby B looked good, but he noticed something unusual about the other baby’s heart. He said he wasn’t sure, but he described it as “pretty serious.” And that’s about as far as we got in terms of an explanation. He would refer us to the high-risk doctor at the Womens’ Institute, who will help give a second look. Finally, before we left he said something along the lines of, “It could be nothing, but to me it looks pretty serious.”
I was in a fog. I’m not even sure if my mind was racing or if it shut off entirely. I have no clue, all I know is that all my pregnancy-time terrors came true…something was wrong with one of our babies. And I’d have to wait weeks to find out what it was. I hugged my wife in the parking lot and tried my best to reassure her and be strong for her. We both had to go back to work, though (I really didn’t want to), so off we went our separate ways. I got in the car and drove pretty much 25 feet before I completely lost it. I mean, what the heck? What the heck did we do to deserve this? Haven’t we been through enough? I was sad, I was angry, I was confused…it was crazy. I begged God to make it better, because babies don’t deserve that. He could make me sick if He wanted: Go ahead, God…take my arm, take my leg, take the nose off my face…whatever…as long as he’s ok.
I sat in the parking lot of my job and prayed that the next appointment would show that the baby was ok and that we’d be able to look back and laugh, saying “haha remember that?” I walked into the building and one of my co-workers asked how it went. I remember sitting in her office, still in a fog, staring off into space and saying “Not good.” It’s funny, I walked in not wanting to talk to ANYONE, but once I started to talk about it, I felt a little better. It made it real, like this is what it is, or at least this is what we think is going on. How bad it is remains to be seen…
I like to tell people that when we were expecting our first child, I was SO convinced it would be a girl. I don’t know why, I just thought that. I tried my best to prepare mentally: specifically perfecting the evil eye I would give any boys who would try to step to her. Well…I was wrong. We had a boy, and he’s awesome. I love Hudson with all my heart and I love being his dad.
This time around I was pretty confident that at least ONE of the kids would be a girl, and that’s what my wife wanted too. We went to this 3D Ultrasound place in Fort Mill (we used them for Hudson too and they’re awesome) with my Mom and Aunt. The big moment arrived and…boys…both of them. Cool! “Hudson will have someone to beat up on,” I thought, “and they’ll gang up on him too, it’ll be great.” Then came the other fun stuff like “Oh Lord, they’re gonna eat us out of house and home!”
Not a day went by during my wife’s pregnancy that I wasn’t completely amazed that we were having twins. Heck I STILL can’t believe we have twins!
My wife and I wanted 2 kids, max. We already had one, Hudson, who was 2 years old when Bekah’s home pregnancy test had the lovely plus sign. June 5th was the day after her birthday and she had an appointment with her doc. Since I started a new job, I didn’t think I’d get the time off to go, not to mention that I had to be at a Leadership Retreat that particular day. I do have to preface this story by saying that I don’t do well during the pregnancy experience: I freak out and get really nervous when it comes to doctors appointments. You hear all the time about bad news and I just didn’t know what I’d do if I got bad news at any of these appointments.
So you can imagine my terror when my wife texted me in the middle of one of my meetings and it simply said “Call me.” I excused myself and nervously dialed her number. She answered with a fairly happy tone: “Hey babe!” And then…I knew. I KNEW. TWINS. It had to be. And then she confirmed it…twins. And then my mind went NUTS. Are they sure? Twins. TWINS?! What?
After a short chat I returned to my seat in my meeting and was in a fog all day. I couldn’t stop thinking about things like how we’re supposed to afford twins, how we’ll never sleep again, how we’re supposed to fit them in our cars, etc. But I came home and Bekah showed me their little ultrasound, and in spite of all the worries, the only thing I said was, “I love them.”