This past December, Grant and Nolan turned the big number six. I can’t believe they’re already six, I can’t believe how much they’ve grown, and I can’t believe how much they’ve accomplished this year:
These two kiddos went from NICU babies to big boys starting Kindergarten. Nolan has been making some really wonderful progress with his eating, in fact, we really only use the g-tube right now for medications while he’s asleep. That’s amazing! Grant has started karate and is really enjoying that. I really love these two kiddos: they can go from sweet to crazy in the blink of an eye, but at the end of the day they bring us lots of joy and laughter.
We celebrated their birthday at home with some presents and fun. Each kiddo got a little cake that was decorated with their favorite animal. Nolan had owls and Grant had sloths (I told you, they’re a trip).
Every birthday is a big source of celebration in our home, especially for Nolan…every year is a gift! Love you boys!
I don’t know if this happens to anyone else, or maybe it’s just me due to special circumstances, but there are occasional moments that bring back early memories of this heart journey. And not like those “Awwww” memories…it’s more of those “Remember how much that sucked? BLAHAHAHAAA.” You ever have those moments? Like something: a visual, a sound, a place; that takes you right back to a moment and just messes you right up. Yeah it happens to me sometimes.
I remember the first time I went back to visit the CVICU when it wasn’t for a patient-related need. I can’t remember the exact circumstance, but I think we were either dropping off gifts for the staff or care packages for the patients that my wife put together. Either way, things were just fine as we drove to the Children’s Hospital, got our visitor’s badges, rode the elevator up, got buzzed onto the unit and walked down the all-too-familiar hallway. We were greeted by all those nurses that had since become like family to us…and it was sweet. AND THEN. IT HAPPENED. In the distance…over the sound of everyone talking…over everything else, I heard it: the beeping of the pulse ox monitor. The faint ding…ding ding…DING DING DING, that I heard so many times. And suddenly I felt my temperature rise significantly and my palms got like this:
I wasn’t full-on Shawn Kemp sweating, but I was close. And for a brief moment it’s like time stood still while the memories came crashing back: being scared, being tired, being worried…all those days after days after days. It was very brief but it felt like forever…and I kinda remember going back to the car and commenting how crazy it was to hear all those familiar sounds. But after that, trips to visit the CVICU were just fine for me.
Last year I had the opportunity to visit the NICU for a purely work-related matter. There are safety checks that several of us on staff are assigned to do and I was covering someone’s assignment, which happened to be the NICU. I was like, “Yeah I’ll do it, no problem.” And I walked around with the Nurse Manager, looking at fire extinguishers and gas tanks and whatnot. Then the time came, and honestly I didn’t think anything of it: the Nurse Manager badged us in to the very nursery where both Grant and Nolan were. The door swung open to the dim light of the NICU and I immediately saw the spot where they both used to be, since they were right there in front of the doorway. While the NICU is very quiet, the sound of my heart beating was deafening. I remember that familiar feeling of sweaty palms and the thoughts that came rushing back…back to those moments where we didn’t know what would happen. The Nurse Manager was talking but all I heard were those Charlie Brown-style wah wah wahs. As before, it lasted a brief moment and I turned to the Nurse Manager and said, “You know it’s amazing being back here…my twins were right in this spot after they were born and I haven’t been back since then.” And we chatted about that briefly and I felt much better and we continued on with our work
The last instance of this was very recent: I was with my co-workers doing a very fun video project and we were going throughout the hospital filming staff doing fun stuff. We eventually made our way to the OR floor. As their Nurse Manager wrangled up some staff for our video, I saw it. Straight ahead of me was this little pre-op holding area…the very area where we made the long walk to bring Nolan before he went in for his Norwood procedure. That moment was seared into my mind because it was the most scared I’ve ever been in my life because I didn’t know if that kiss I planted on his little head would be the last. Being there was very intense for me because – let’s face it – I would’ve never in a million years thought I’d be hanging around the OR floor. I mean come on. But here I was, and the feels were real, man. I stood and stared, and stood and stared. Finally a co-worker came up to ask me a question, which I sorta half-answered. Then I turned to him and was like “Man, this is crazy being down here,” and I pointed to this little holding area and told him all about it. He thanked me for sharing the experience and said it’s a good one to share since it can help clinical staff understand the level of anxiety our patients and families go through. I was thankful for that and it honestly helped me feel better. From there I was fine, the video was awesome and the OR staff were hilarious.
I’ve written before on this blog how I do think Heart Parents suffer from PTSD. I firmly believe it. I also believe that it’s different for everyone: I’m sure some people have it in extreme forms and some people will just get these flashes of it. Either way, I’m sure as you’re reading this you’re remembering a moment where this has happened to you. And it’s ok, it doesn’t make you weird or defective. And it doesn’t necessarily mean you need to seek any kind of professional help (though I’m not the person who should help you decide that). In my experiences above the one thing that was a common thread in these “Raging Remembrances” was the act of calling out what I was experiencing and talking about it. I’ve found that if I say “Hey this reminds me of such-and-such” it allows me to acknowledge the feels are real and that I understand them.
I’m not saying you have to be all touchy-feely or whatnot…I’m saying I hope that you get comfortable with sharing your momentary Raging Remembrances…that at least brings someone into the ring to be on your side. Heck you don’t even have to share it with a fellow heart parent, just share. If you talk about it, you avoid packing it away. Sure you can get away with packing one or two or three of these memories…but over time you’re gonna run out of room…and when you try to stuff one more thing down it’s going to come bursting out and it’s gonna be U.G.L.Y.
While it does take some bravery to talk things out, remember that you don’t have to go into the WHOLE story. Just a dab will do you. Give it a try the next time something sets off your Raging Remembrance.
On December 16th, at 6 days old, Nolan was finally broken out of NICU for good. He was on his way up to the Cardiovascular Intensive Care Unit (CVICU) for some observation and so the team can get ready for him post-surgery. As we inched ever closer to surgery day, things felt incredibly tense, and I was just trying to keep my faith up and be strong. We got to CVICU about mid-day and it was an opportunity to see Nolan without that stupid bili light mask on, though they said he’d need to continue to light treatment as soon as they settled him in, which sucked. A nurse was getting him situated in this huge room and eventually a Nurse Practitioner named Lindsay came in. She noticed I was wearing a shirt from church and noted she went to the same church but a different campus. That was cool and helped cool things down a bit. Meanwhile, Nolan was just being SUPER fussy. My wife and I felt like he was just miserable with the mask on and wanted to be held. Finally Lindsay just picked Nolan up in her arms and gently rocked him back and forth. It’s funny: I can close my eyes and picture this part so vividly and I don’t know why. Maybe because it was so unexpected? I don’t know. I just think it was awesome to see this complete stranger show complete human care for our son. And you know what? He calmed down. So Lindsay said no more bili light…he’d had enough and was fine enough to be with his parents for the day. And she was instantly my hero.
They got Nolan all snuggled up in bed to rest for a bit, then brought in a couple chairs to sit in when we decided to hold him.
And that was it…we waited. At 6am the following morning they would come for our one-week old and whisk him away to some of the most serious surgery possible.
In the meantime, though, I definitely wanted to take advantage of my time with him, so Bekah and I took turns holding him…all night.
This is one of my favorite pictures of me and Nolan. I love looking back on it and I’m amazed at how tiny he was. And even better, he chose just that moment to open his eyes and look up at me. A great moment, indeed…
What a day. This was the same day that I got to spend doing fun train stuff with Hudson. It was also the same day Grant came home. In addition to that awesome stuff, though, it was a day something wack happened. See, up until this point, we became pretty food mainstays at NICU. The nurses and staff knew us and we were there a ton. In fact, we were part of the process: when the time came, the nurses would let us help by taking the twins’ temps and changing their diapers. Easy, but it was a great way to stay involved and have hands-on time with the boys. And even if one of the boys were to poop when it was not scheduled diaper time, they would tell us it was ok to change it whenever we wanted. Today, though, this was different.
On the way back from my day with Hudson, my wife called to say Grant would be discharged, but she was also very emotional as she told me about this really rude nurse who wouldn’t let her do anything with Nolan. At one point my wife heard him poop and when she went to change him, the nurse yelled at her and said he wasn’t scheduled to be changed yet and it didn’t matter if he pooped or not. Well as I soon as I heard that, I was PISSED. Like that bear up there (you’ll see him again later). One thing I DO know, is that working for the same healthcare provider as the hospital meant that patient complaints are taken very seriously. And if you remember from a previous post, the NICU staff provided me with a handy-dandy list of important phone numbers…one of which was the Nurse Manager. So I called that number and calmly explained the situation. Adding with rather sharp emphasis that, “I do not appreciate anyone allowing my son to sit in his own waste for any length of time.” The nurse manager apologized profusely and said she’d handle the situation and would like to meet with me the next time I was in. I told her I was on the way.
When I got to the hospital, she was there to meet me outside of the NICU doors after I did my 2-minute hand-wash and gowning. I told her before we talked I just wanted to go in and say hi to my wife and twins. I went in and noticed Nolan’s numbers on his monitor were a little low. So I leaned down and said “Hey buddy, I’m here and i love you. I’ll be back, ok?” and his numbers went up. Told you…we have a bond. I did the same for Grant then went off to meet with the Nurse Manager in her office. She was very cordial and again apologized for any problems. She said she spoke with my wife and the nurse and that the main issue centered around Nolan having some lower oxygen saturations that day, and they didn’t want him too worked up through too much human contact. She also said the nurse in particular had many, MANY years of experience and only wants the best. In the best way I possibly could, I told her I didn’t care if the hospital was built around that nurse, she needs to treat people better…like human beings, with good, clear communication. If she just SAID something, it wouldn’t be such an issue…instead she had to be all stank about it, which caused this hullaballoo in the first place. And I told the nurse manager, “I appreciate your expertise, and I will keep contact with him to a minimum…but if I want to hold his hand or his foot, I’m gonna hold his hand. And you will not stop me. That’s MY son.” To be honest, I didn’t feel completely satisfied with the meeting, but it was more important to me to voice my concerns and be on with my life; particularly spending time with the twins and getting Grant ready to come home.
Unfortunately, people talk. That evening, after Grant was settled in at home, I went back to the NICU for a few hours to hang out with Nolan. I sat real close to him, held his hand for a little while, but mostly just sat quietly, prayed, or talked to him. When I got there, I asked to see his nurse for an update. At this time of day, the shifts had changed, so it was a new nurse, thank GOD. She came up and I asked how he was doing, and after her report I asked if it was ok for me to just scoot up close to him and talk to him quietly. Her response blew my mind. She said something like, “Oh yeah, I heard about that. You know, like, you’re the parent, if you want to do something, you can go ahead and do it, I won’t stop you.” That was frustrating. So apparently word got out and suddenly I was the Ogre Parent. Great. I tried to assure her that it was merely a simple question and I just wanted to do what was best for him, but I got the same kind of response. Ok, whatever.
Listen, sure i was labeled as a bad guy by a small handful of people…but it was worth it. I put those bustas on notice that I didn’t want them treating my family like just another number. We got incredible care at the NICU, so don’t think a few knuckleheads ruined it for us. But it became clear to me that things aren’t always communicated well, nor do they happen in a manner you like or feel is fair. SAY SOMETHING! It is your right. As a parent, you are your child’s best advocate. Trust your gut and let someone know how you feel. Sure, there’s the chance you become the bad guy, but most of the time they just want to work hard to make it right…and they should. Please, for the sake of your kids, SPEAK UP!
So while I was having a fun day with Hudson at the NC Transportation Museum, Grant was getting ready to be discharged from the NICU: he got a circumcision and a hearing test and the doctors were happy with his jaundice levels. Since Hudson wasn’t allowed in the NICU, I had my mom meet us at the hospital to entertain Hudson in the waiting area while we got Grant ready to go home. During the pregnancy, Bekah and I spent a lot of time talking to Hudson about the babies and their names. Hudson, in all his 2 year old glory, couldn’t pronounce their names. Instead he would refer to them as “Nolit and Cramp”. HILARIOUS. So Hudson knew he would be a big brother, he just didn’t completely understand the concept. So I took Hudson with me to the parking garage to get the van and I told him, “Your brother Grant is coming home!” and he just replied with an “Ok.” We pulled up to the front of the hospital, where Bekah was waiting with one of the NICU Nurses who helped her out. I told Hudson to stay in the van while I got out to help with all our stuff. I put some bags into the back and then picked up Grant’s carrier and popped it into place right across from Hudson. Hudson curiously leaned over and unleashed this gem: “What’s THAT?!”
After I cracked up I told him it was his brother Grant, and he gave me this whatchu talkin bout willis look. And we were off. It was bittersweet, because I remember making this same drive when Hudson was ready to come home as a baby and I was just mortified of how he was doing in the back. This time around i was a pro, so I was happy to have Grant ready to come home. Sad thing was, I’d be leaving Nolan behind…and things would get more challenging with one baby at home and one baby in the hospital. We got home to get settled in and Hudson was still unsure of this whole “baby” thing:
But eventually over time he came around to be a great big brother:
Biggest challenge to having Grant home? Lack of sleep…oh yeah…I forgot that babies don’t sleep. So not only were we sleep deprived, we’d either take turns going to the Hospital, or would work finding people to watch the two boys while we went to see Nolan together. Grant is a sweet, chill baby, though, and we love him to death. It was good to get him out of NICU and home where he belongs.
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.
After a couple days of both boys being in the NICU, we were told that we were going to speak with the surgeon. Well we already did that, right? Well yeah, we did meet Dr. Peeler, but this time we’d meet the other surgeon, Dr. Maxey. My first thought was “Ok, what can he tell us that we don’t already know?” but we agreed. Dr. Maxey chose to meet us in the NICU so we could be close to our kids…definitely a nice first impression. He was very kind and personable and pulled up a chair and said, “I’ve cleared up my schedule to be sure I give you all the time you need to have your questions answered.” WOW! That’s pretty special, right?
So Dr. Maxey gave a quick rundown of what HLHS was, which we were pretty good with, and then began to describe the initial surgery, which was called the Norwood Procedure. He was very, VERY clear that the Norwood Procedure is a very serious open-heart surgery. It is intricate and challenging and a baby’s heart is roughly the size of a quarter. A QUARTER. How the heck do they do surgery on that?! Then he said something that absolutely wrecked me: nationally about 20% of kids (1 in 5) do not make it through the Norwood Procedure. Oh my God. BUT, he said, he and Dr. Peeler have a ton of experience on the Norwood and do each Norwood Procedure together. He said their rate of success is 97%. Whew, that’s much better. But…what if Nolan ends up as that tiny 3%? How would I cope? What would I do? Is that even fair?
Dr. Maxey was such a nice guy. He did a great job of reassuring us we were in the best place for Nolan, but still reminded us that this surgery was very serious and could take upwards of 6 hours or more. He said sometimes they won’t be able to close the chest post-surgery due to swelling and that’s ok. He said he had time and asked us if we had any questions. I’m not sure if I even asked him any…honestly I was nervous for my son and just as much nervous for myself because I realized I’d never been so anxious in my life. Surgery was set for the morning of December 17th…7 days after Nolan was born.
I enjoyed meeting Dr. Maxey: he does a great job of being informative and reassuring. He and Dr. Peeler make a great team.
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…
Yes that’s my tiny Nolan eating from a bottle I was giving him while in the NICU. This will always be an awesome moment for me and I’ll tell you why. Nolan wasn’t the best at bottle-feeding after birth. The nurses would give him about 15-20 minutes to complete a feed. If he couldn’t finish his feed on several occasions, they’d have to insert an NG (Nasogastric) Tube, which is a tube that goes in the nose and to the stomach for feeds. As you can see in the photos, he had an NG tube in by the time these were taken. They WANTED him to bottle feed, to maintain his sucking reflex, but they also didn’t want to take too long to feed. One nurse told me that bottle feeding for little ones is the equivalent of you and I doing a pretty strenuous gym workout. That burns a lot of calories for Nolan and he would need every single calorie for surgery, since he was so small.
It got to the point where Nolan, in his infinite stubbornness (recurring theme alert), wouldn’t drink for the nurses. None of them. Sometimes, though, he would eat pretty well for me. And just me. I was definitely feeling the Dad love there! So the nurses would let me hold him, which was priceless, and I would try to feed this itty bitty guy. The trick was to hold the edges of his ears just gently, which would supposedly help trigger his sucking reflex (who knew?) and use a couple fingers just under his chin. At first I was nervous because I didn’t want to do anything to hurt him or make him work too hard, but even the nurses were amazed: he was drinking for me! I tried to feed him as much as I possibly could because I absolutely loved that bonding time. I held him and he’d drink quietly and it seemed like all the problems would go away. It was a sweet time to be with my boy. And to be brutally honest, I wanted those moments with him as much as possible, because I knew what was looming and who knew how many chances I would get…
My bond with baby Nolan became a pretty awesome thing: he could be having a rough day with his monitor going all bonkers, and I’d walk in and talk to him and everything would calm right down. So he knew me…we bonded…and it was awesome.
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.