Monthly Archives: January 2014
I’m learning that once the Glenn Procedure is done, it gives you a lot more ability and freedom to just have fun with your kids. Eventually the cardiology appointments move from weekly to monthly to every 3 months. The only time you go to the doctor is for your average ear check or a vaccine. Life is good.
One time where we had a ball is Halloween. While our oldest dressed up as a police officer, we had no idea how to dress the twins for Halloween. Salt and Pepper Shakers? Thing 1 and Thing 2? We decided to eventually dress them up as Charlie Brown (Grant) and Linus (Nolan):
Hilarious. They looked adorable in those outfits. We did a little bit of trick or treating with them, but otherwise they stayed in. I’m sure next year will be an even better Halloween for them. Then the next year is gonna be just plain bonkers. Heck, Nolan liked Halloween so much, he even dressed as a skeleton:
Nolan has been turning out to be quite the ham. And he LOVES the camera…you just point one at him and he has the biggest smile, that little cheeser.
In spite of all the challenges of having a heart baby, you definitely need to make time for fun. Laugh a little. Heck, laugh a lot. Make silly faces and noises…your heart baby is still a baby and likes the same stuff as other babies. So dads: be generous with the ticking, the tummy raspberries, and all that silly stuff. I know Nolan loves it…and his smile and laugh is worth so much to me.
The force is strong with this one
Hipster Nolan listens to music you’ve probably never heard of…
Maaaaan….I was PUMPED for this day! Early on in this blog you’ll remember that I wrote about the 2012 Heart Walk (https://hlhsdad.wordpress.com/2013/10/14/the-2012-american-heart-association-heart-walk/). Basically I signed up to do the heart walk solo (Bekah was pregnant) about 3 days after we found out one of the twins would be born with HLHS. It was an incredible experience…and I couldn’t help but think that the 2013 Heart Walk was gonna be epic because our heart warrior would do it with us, God willing.
Well everything was looking good for all 3 kids and my wife to join me on the heart walk. I didn’t stop there, I wanted a TEAM this time…so I worked on assembling TEAM NOLAN for the heart walk. We raised a little bit of money for a good cause and quite a few people signed up to walk with us. Did I mention I was pumped?
I kept counting down the days, kept talking to people about it, kept checking the weather. Finally the day was here! I printed my parking pass, we loaded up the kids, and we all drove to Uptown Charlotte for our first Heart Walk as a family. Yes…I was pumped. We got there to the meeting location for our team. And I waited…and waited…and waited. No one showed. Hmmm. Eventually I got tired of waiting and went to the Lowe’s tent to build a fire truck with Hudson (That mad him pumped), when a friend showed up, then another with his family. So while most of Team Nolan was a no-show, we still had a nice little team. We got Nolan a new “Heart Hero” cape and attached it to the stroller. Everyone got their stickers for who they were walking for (Nolan, duh). And then we gathered up to begin the walk:
The pace this year was much slower since we had a team, 2 strollers, and a toddler with us. Last year it was just me and my headphones, so I chugged along. The walk was a lot of fun, as always. We got to meet other heart families and their kids…it was just good to be together.
I know, Nolan looks pissed in that picture lol it cracks me up. Regardless I was happy to have him on that walk with us. But MAAAAAN, I was way outta shape, because I was wiped towards the end of that thing. But as we neared the finish line, all I wanted to do was pick Nolan up and carry him across that finish line together with my wife. We had gone through such a rough 9 months with our boy and this was to show we were in it together: we fight this fight as a team:
The Heart Walk always holds a very special place in my heart: I want it to be something we do as a family for a VERY long time!
So post-Glenn Procedure, Nolan had a little bit of a hiccup with fluid on his lungs that landed him in the hospital for one week. But now Nolan was home and we had nothing left to do but move onward: keep up with physical therapy, speech therapy, doctor’s appointments, medications, etc. It’s still a colossal amount of stuff – especially for my wife – but at least there weren’t any surgeries in the near future and that’s a great, great thing. Eventually Nolan came off the diuretics he was sent home with, he was no longer taking aspirin either. In fact, he was on ZERO heart-related meds at all at this point. He was only on one med for bowel motility and one med for his reflux.
Nolan moved to physical therapy twice a week, and if my work schedule permitted I went to a couple therapy sessions with him. I felt so bad for him because he would scream and scream and cry and cry…it broke my heart. Eventually, though, he started to make some progress and before you know it, he was able to hold himself up for as long as he wanted:
On the day I took this photo, he sat up for 7 minutes straight. It was a definite cause for excitement! Our little happy boy was improving!
Unfortunately he was still way behind in the mouth-feeding department, but we still worked on it.
During this time, we managed to meet and befriend several heart families either in person or online, and it has become a great resource. I definitely encourage you, as a heart parent, to find other heart parents to connect with: ask them questions, meet their kids, just hang out. It makes a world of difference. There are tons of groups on facebook you can connect with, and if you want to find someone local, ask your local heart team to connect you with someone. That’s what happens with us: we get emails asking if we’d be willing to reach out to families who are about to have an HLHS baby. We don’t pretend to know EVERYTHING, but we can definitely share our experiences and lend a helpful ear. Through this we’ve met some really cool people and really nice family. If we work together and lean on one another, our heart warriors become one heck of an army!
During this time we also realized that having a heart baby is pretty costly. We got some of those “this is not a bill” statements from the hospital for Nolan’s FIRST hospital stay (the 2-month ordeal) and it was around $750,000. Yes, you read that right…three-quarters of a million stinkin’ dollars. It blew my mind and actually made me laugh: I mean, really? Luckily I am blessed with having insurance through my employer as well as getting medicaid for Nolan. Still, things aren’t the easiest: my wife couldn’t go back to work since no daycare is gonna take Nolan…nor would I feel comfortable with him in the hands of a daycare while he’s under tube feeds and all that. And even if she did work, either one of our salaries would go completely to paying daycare for 3 kids. What a world we live in, right? And, of course, life happens through all this: things break down, bills pour in…heck, at one point in the summer our oldest broke his collarbone while he was at Vacation Bible School! SHEESH. So we realized that we needed to try to do some fundraising to help us out. Here are my shout-outs to some incredible places:
Kisses from Katie: an absolutely wonderful group from my home state of Connecticut. They reached out to us via a family friend and were so supportive. They started this group in honor of their daughter, who was born with HLHS and is now a heart angel. They want to support families with critically ill children. They have helped us with bills and even bought us a new dryer when ours was on the fritz. They are AMAZING and I can never thank them enough. http://www.kissesfromkatie.org/website/publish/home/homeList.php
Give Forward: this is a great website that allows you to develop a fundraising web page. They handle it all and when your fundraiser is closed, they cut you the check. Easy as that. They were great to work with and always available to answer questions quickly via email. http://www.giveforward.com
Bonfire Funds: this is an awesome company that will design a shirt for you to use as a fundraiser. They have high-quality shirts and give your supporters the option of buying not just a t-shirt, but a child-size t-shirt, a long-sleeve t-shirt, and a hoodie. They have lots of options and they ask you lots of questions about your cause so they can design you a really cool shirt. I was amazed that they actually used a design I made and just added a few finishing touches. In the end, the shirt looked awesome and we sold about 60 of them online! http://www.bonfirefunds.com
We came home from the hospital with Nolan with quite a bit more freedom: we didn’t need to weigh him or take his sats daily, though we would still keep up with it from time to time. As always, we looked out for the other warning signs: labored breathing, any illness, etc. We did notice that Nolan was incredibly fussy when we got him home, and we know to attribute that to the post-Glenn headache, aka “Glenn Head.” That part definitely sucked: he was really irritable and we tried so very hard to make him comfortable.
As our first week home started to wind down, we noticed that Nolan was even much more fussy than usual. My wife decided to take his sats and noticed they were in the mid-70’s…which was his post-Norwood number. After the Glenn he was supposed to be in the mid-80’s. We kept an eye on it, only to see it trending downwards some more til it was in the low 70’s. Finally my wife decided to go with her gut instinct and call the cardiologist. She was told that they were extremely busy and to go take Nolan to our pediatrician instead. My wife refused to accept that, knowing that the pediatrician was just going to freak out and call the cardiologist anyway. She basically told them, “I’m leaving now and I will wait til I see someone.” I left work too and headed down that way to meet up with her. I gave my wife tremendous credit for going with her instincts on this one, since my first thought was just to observe him a little longer. We finally got seen by a cardiologist, who took a listen to Nolan and said he thought Nolan might have some fluid on his lungs that built up after surgery and that he’d get an ultrasound just to look at the heart function, just in case. GREAT.
So off we went to the ultrasound room, where we both worked to keep Nolan calm, which was becoming a near-Herculean effort with his feeling crummy AND the Glenn Head. The doctor came in and noted that the heart function was perfect, there was no problem with the Glenn procedure, but that even in the ultrasound he could see some fluid on the lungs. SOOOOOOO unfortunately, Nolan had to be admitted to Levine Children’s Hospital…a whole week after we came home from the Glenn Procedure. How frustrating. I mean we came home absolutely elated with his progress and now this. Hopefully the stay would be long.
We were wrong.
Nolan underwent a chest x-ray to see the extent of the fluid buildup and then was put on some diuretics so he could basically pee off all that excess fluid. He’d gone through it before post-Norwood but that was an immensely different story than now. Nolan was placed under what’s called “Droplet Precautions”…which basically had everyone coming into the room donning a mask and gown, just in case Nolan’s fluid issue was due to a communicable illness (it wasn’t, FYI).
So the days became long and dull. We sat and waited and basically Nolan would pee like a full camel. With the time I took off from work for the Glenn Procedure, I didn’t have much to take off this time, so I had to do my old work-home-hospital shuttle. As the fluid came off, Nolan started getting back to his normal self: back to kicking his feet when he was happy, so that made me happy.
In a funny-when-I-look-back-on-it moment, our good friend “Dr. Doom” was on call during one of the days I was there, and she came in for her daily rounds. As I saw her in the outside room gowning up, I was like “Oh God, here we go again.” I have to admit I was wrong. She came in friendly as ever and talked ever so sweetly to Nolan. At one point Nolan reached out and grabbed her hand and she played a little bit with him and even leaned down super close to talk sweetly to him. MIND. BLOWN. So yeah, I guess she wasn’t so much Dr. Doom anymore. It was like a different person…this makes 2 times in a row she has been kind to us and Nolan, and she was helpful and even made sure I had all my questions answered. It made me feel bad for all the stank I was emoting towards her.
Anyhow, one day in Progressive Care turned into two, which turned into one full week before we finally brought Nolan home. How’s that for ironic? This fluid-on-the-lungs thing kept him in the hospital longer than the Glenn Procedure did. Sheesh.
We were really happy that Nolan’s Glenn procedure went splendidly…in fact, he was up in Progressive Care the very next day! Now we had to settle in for his recovery period. While things looked good now, I remembered the 2-month recovery from the Norwood Procedure. All-in-all, Nolan did very well.
His color looked great, he was off oxygen, and he was overall a happy little boy. He was a little bit fussy when the “Glenn Head” would kick in, and I felt so bad for him, but the staff did an awesome job keeping him comfortable. At one point some teen pageant queen from SC came to pay him a visit and gave him a dolphin pillow pet. That was very sweet: Nolan really digged her…maybe he’ll look her up sometime lol
The great part about this procedure was that we were able to hold Nolan pretty much right away (just no picking him up from under the arms til the chest healed up) and I had quite a bit of time on the weekend to spend with Noli Poli and I could tell he was just DYING to get out of there…and so were we. Overall, the comparison between the Norwood recovery and the Glenn recovery was night and day.
On our 6th day there, we were told Nolan would be ready to go home! And boy was he ready:
What a change…look at that happy boy! And he was rockin’ some sats in the mid-80’s. Life was good for our little warrior. Bekah and I were super-happy too…no surgery again for a couple of years, God willing. Now we could really focus on Nolan’s quality of life: in particular his feeding and physical therapy. There was still a lot of work to do, but MAN…2013 had been a heck of a year and it was barely half-over!
Before we left the hospital, one of the Nurse Practitioners came to visit and gave us some great news: NO MORE CHAMP BOOK! We no longer had to record his stats and weight daily!
On July 17, 2013, after all his necessary pre-sugery work, we brought Nolan to Levine Children’s Hospital. I was pretty tense. Deep down, I knew and had faith that everything would be ok, but there was also the memories of the long recovery last time, with all its ups and downs and the fear that came with it. Luckily for us, Bekah’s college roommate Arianne came to stay with us and support us through this time. It was good to have someone there.
We took Nolan to the same room that he was in before his cath. They took all his vitals and we worked on keeping him happy. At this stage he was such a smiley little guy and whenever he was happy, be would kick his feet rapidly: I called it the Happy Bike. The anesthesia team came in to meet us and chat with us a little bit about the procedure. From there we prayed for our little guy and then it was time.
If you remember from way back in this blog, I talked about us walking with the nurses all the way down to pre-op with Nolan before his Norwood Procedure. We wouldn’t be doing that this time, and I wasn’t sure why. Instead one of the anesthesia team members held out his arms and I handed over our 7 month warrior…my hero…to be cut open for yet another time. While I was clinging to the faith I had, it was no less heartbreaking to see my little guy go. Next, though, it was time to go to that stupid waiting room that I hated so much. We checked in with the lady at the desk and saw that another of our friends, Karen, was already in there waiting for us. It was quite the surprise because we weren’t expecting her. It’s always good to have company during this stage.
And just like the first time we waited: we talked, we read, we watched tv, surfed the interweb, stared off into space. And periodically we’d get updates from the O.R.: anesthesia was completed, the first incision made, everything’s looking good, etc. Finally we got word that the procedure was complete and that Nolan was doing well, but it would be a little bit before we got to see him. I took that opportunity to go to our favorite Malaysian Restaurant to pick up some lunch. We ate and were very happy, but we were dying to see Nolan.
Finally we were allowed up to see him in the CVICU. It was crazy being back on that floor with its familiar sights and sounds and people. What was different this time was that Nolan was doing AWESOME and all those nurses were thrilled to see him and how well he was doing! Nolan was still a little out of it and was intubated, but all signs pointed to him doing well…AND His chest was closed! YES!
We held his hand and talked to him as he came to. He was in some discomfort, but he was looking great…even his color was amazing. The nurses and the rest of the heart team were very happy with his progress and the goal was to remove his breathing tube and get him up to Progressive Care within a day. And that’s what happened! Less than 24 hours after surgery, Nolan’s tube was out and we were already out of CVICU, which was bittersweet. Back to Progressive Care, where things were a bit more challenging. This time, though, we knew what to expect.
It was amazing how much better Nolan looked after the Glenn Procedure: his color was much better and not so pale, and his oxygen sats went from low 70’s pre-surgery to 85 post surgery. YES! Now for the recovery phase…one day at a time…
It was coming up to that time: Nolan was fully recovered from his Norwood Procedure, he had a successful cardiac catheterization…now it was time to schedule his next heart surgery, the Glenn Procedure. We could definitely see Nolan getting a little stronger and gaining weight slowly but surely. While we looked hopefully towards the future, I’d be lying if I said I didn’t have some anxiety about yet another surgery for Nolan. The recovery for the first one took so much time and I didn’t think I could handle another lengthy recovery.
The cardiac team called us one day to talk about scheduling Nolan’s Glenn Procedure. They gave us the date of July 17th but noted that Dr. Peeler, the renowned HLHS surgeon who did Nolan’s first surgery was not available. I was like WHAT?! I mean Dr. Peeler is THE Man for HLHS babies and you’re gonna try to schedule a surgery without him? You gotta be freakin’ kidding me! No offense to Dr. Maxey, the other surgeon, but really?
So I called them back. I was like, “I don’t mean to offend anyone, but we NEED Dr. Peeler.” The scheduler replied, “Well Dr. Peeler will be on vacation and won’t be back for several weeks, and even then his schedule is booked up.” I sighed loudly. I felt defeated…and suddenly scared to death. I mean the Glenn Procedure is supposed to occur between 6 and 8 months of age. By July 2013 Nolan would be 7 months old…if we waited longer, it could be bad for him. So very reluctantly I agreed to keep the July 17th date.
We also had a meeting with Dr. Maxey scheduled…first off, let me say that I love Dr. Maxey, I think he’s an awesome guy and I’m thankful he’s on our team, but I was worried I’d offend him since I came prepared with questions. He started off by taking a look at Nolan and expressing how happy he was to see his progress. Then he talked about the Glenn Procedure and what they would be doing and why (See yesterday’s post for more info). Interestingly, he mentioned that the procedure will take about 3-5 hours, but only 45 minutes of that will be spent working on the heart itself. Amazing. He said a lot of time is given to prepare and to get through any scar tissue. He said “If you don’t hear from us, it’s ok.” Then he asked if we had any questions. So off I went: how many of these have you done? Was the last one? How many have you done by yourself? Then I apologized and he smiled and said it was ok: he understood we had the utmost care for Nolan and wasn’t offended. He told us he does TONS of Glenn procedures and has been doing them for a long time. I felt pretty satisfied by that…I mean, what other option was there, right?
And to be honest, even if it was Dr. Peeler sitting there in front of me, I would’ve had some nervousness too. There will never, ever be a time where sending your child for any surgery or procedure will be easy.
One thing to note, for all HLHS families out there who haven’t gone through the Glenn yet: Dr. Maxey did mention that the only bad thing post-Glenn is what he called “Glenn Head”. He said in essence all the blood from the upper body is now being re-routed and it brings a wicked headache that can last for a couple days to more than that. But he said it eventually goes away…oh boy…
The Glenn Procedure (or hemiFontan) is the 2nd of three open-heart surgeries for children born with Hypoplastic Left Heart Syndrome. This surgery occurs somewhere between 6 and 8 months of age. It is a surgery in which a detour (shunt) is created from the aorta to the pulmonary artery. The bidirectional shunt is performed by connecting the superior vena cava to the right branch of the pulmonary artery using fine sutures, and dividing or tying up the pulmonary artery. Now, venous blood from the head and upper limbs will pass directly to the lungs, bypassing the right ventricle. The venous blood from the lower half of the body however will continue to enter the heart (this will be corrected in the 3rd surgery).
The venous blood from the upper body is re-directed first, because that is the larger part of a baby’s body. As the body grows, the lower body becomes larger, bringing the need for the 3rd surgery (The Fontan).
Recovery for the Glenn Procedure is much shorter, on average, than that of the Norwood, and oxygen saturation will improve along with overall energy. Since HLHS babies operate with a single ventricle, the Glenn Procedure will decrease the overall volume load on the single ventricle.
So why is the Glenn Procedure done so soon after the Norwood? If you remember, the Norwood-Sano procedure places a shunt in the heart that is attached to the pulmonary artery. As your baby grows, so will his heart…the shunt, however, won’t grow and will begin to stretch. It will get to a point where both ends of that shunt will begin to narrow and you’ll notice your baby’s sats begin to trend downward just a little. This is one of the signs that it’s time for the Glenn Procedure and the Norwood is definitely not a long-term solution. In fact, during the Glenn Procedure, the Sano Shunt is removed.
For more information, check out this incredible video by the Children’s Hospital of Philadelphia (CHoP): http://www.youtube.com/watch?v=fUPVkKvPGe4
Ever been in the right place at the right time? In a previous post I mentioned that my wife and I were pretty disappointed with our in-home speech therapy and physical therapy. It was nice that they were coming to us, but after months, we weren’t seeing any results. The biggest problem was the speech therapist: she was often rude and condescending to my wife (a HUGE no-no) and once Nolan spit up all over her during a therapy session, she pretty much gave up on him. I don’t play that. One day I was walking out to our mailbox, and I’m sure my mind was on 5 million other things that given moment. I mindlessly grabbed the mail and saw just a bunch of junk mail: you know the kind – cleaning services, sell me your house, vote for me, etc. etc…all useless…or so I thought. The last card/ad in the stack was one for a new place that opened very close to our house called Pediatric Boulevard:
I read the card, then re-read it. It said they provide physical therapy, occupational therapy, and…SWALLOW THERAPY. It said it right there in black and white. It was like a God-send. I remember standing there on my front porch and hoping this would be the next step we needed to make. Excitedly I walked into the house and showed it to my wife. We looked them up and saw they took our insurance…all we would need is a referral. That was easy: at the ceremony for the HEARTest Yard (wrote about it yesterday), my wife and I cornered one of Nolan’s Nurse Practitioners and laid out our case for trying this new place. They told us they’ve worked with heart babies before, so we felt like giving it a shot…what did we have to lose? The NP said to email her the info and she would make the referral…we did, and she did.
Nolan currently attends physical therapy twice a week and speech therapy twice a week at Pediatric Boulevard. Yes, we have to drive there, but it isn’t far at all. They’ve shown to be much more aggressive with his therapies in order to push him towards results. No more of this rubbing his face crap…they actually tried to FEED him. What a concept!
You know I can’t say it enough: as a heart parent, you are responsible for the quality of your child’s care…don’t just leave it up to the doctors: they’re very busy. You know your little warrior, so be their advocate and find the best care for them!