This is Real, This is Happening

We knew the Fontan was coming. We knew it was coming from day one but it seemed so far, far away. A successful Glenn Procedure gave us some room to breathe, to create memories, to move on a little bit. But here we are…Nolan’s Fontan Procedure was originally scheduled for late March, but since they had to do some ballooning during his cath, that date was postponed. Since Nolan didn’t need to have the surgery immediately, we chose to wait until school was out for all the kiddos. On May 5th we sat down with his surgeon, Dr. Maxey, to finally talk about the Fontan.

But before we get into the meeting, a little background. When we started this journey with Nolan, we were introduced to his surgical team: Dr. Maxey and Dr. Peeler, who was the Chief Pediatric Heart Surgeon. Last year Dr. Peeler announced he was leaving his position for a similar one at another hospital. Of course, this was a shock to everyone. Eventually, though, Levine Children’s Hospital hired Dr. Paul Kirshbom from Yale. Really awesome guy: I was lucky to meet him a few weeks ago. I know he’s going to take this program to great places. Some parents, understandably, were very nervous about Dr. Peeler leaving. What about us?

Dr. Peeler did a fantastic job on Nolan’s Norwood Procedure (with Dr. Maxey), but if you recall from this blog you’ll know that Dr. Peeler wasn’t available to do Nolan’s Glenn Procedure and it was done by Dr. Maxey, so we had some experience with Dr. Maxey getting the job done in awesome fashion. So for me, having Dr. Maxey do Nolan’s Fontan Procedure didn’t make me so nervous. I mean, I’m still nervous…but you get my drift.

So anyway, here we were sitting down with Dr. Maxey talking about our little man. He walked through what the surgery would entail (I’ll post details about it soon), and laid out all the facts for us. He said Nolan is a great candidate for his Fontan and he feels very confident about it. So if he’s confident, then I need to be confident: in him, his team, the nurses, the CNAs, the housekeepers, the food service people, etc. It’s a total package. If they’ve got my son’s back, then I’ve got theirs. Before we left we had Nolan scheduled for his Fontan Procedure on Monday, June 6th.

Don’t get me wrong, though, this is still stressful, heavy stuff. For some reason, I feel much better about a June surgery date than the late March one. I can’t explain why, but that date was totally freaking me out. Many of you read this blog because it is helping you along the journey: I’ve been happy to share our experiences with Nolan through his Norwood and Glenn. But this is new territory: this is an unknown and honestly I’m not sure if we’re ready for it. There’s no way. We’ll be bringing our son – now a toddler – in for another surgery. There will be fear, pain, and tears. And I wish, as I do very often, that he didn’t have to go through this. Or that he would wake up tomorrow with a whole heart. Sigh.

But this is real, and this is happening…and dates on the calendar keep moving along, and there’s nothing I can do to stop it. In the meantime we hope, we pray, we laugh, we have fun, we continue to make memories. I sing the ABCs with Nolan (sometimes non-stop), I tickle his neck, I encourage him to dance to fun music, and I keep telling him how awesome he is and how much I love him. As June 6th rapidly approaches, we would appreciate everyone’s prayers and kind thoughts! Thanks for being awesome, readers, because of you I know we have friends around the world and we can do this with your help!

So What Do I Pack?

This is the second entry during Congenital Heart Defect Awareness Week (Feb 7-14).

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I’ve heard this question asked countless times, whether in person or on social media: what do I pack for the hospital? I’m going to try and compile a helpful list, but it’s by no means a comprehensive list: everyone is different.  But these are a few helpful things to get you started:

Clothing…for baby and for you

The clothing issue is where most soon-to-be heart parents have questions.  I will say that post-surgery, in my case, clothing isn’t really an option due to a chest incision (or open chest in Nolan’s case) and all the tubes and wires and whatnot.  So you can use things like socks and hats, so gather up a bunch of those and bring them to the hospital.  Let your nurses know about them because they’re often very willing to help by putting on the hats and socks for you.  I know that when Nolan was in the hospital it was always a nice surprise to walk in and see that they’ve put him in some cute little socks at least.  While having your child hooked up to all those pumps and tubes, it might make them seem a little less human, it’s amazing how a tiny pair of fuzzy socks will give that humanity right back.  Now there will come a time where a lot of those tubes and wires come off – and that’s awesome – so you will eventually need some clothes and I recommend the side-snapping variety, which will give access to the baby’s chest with minimal fuss and you can still stick out any wires from it without a problem.  And when you go home you’ll find it makes it easier to dress your baby.  While sometimes these can be tricky to find in stores, you can also find them online.  View what Target has in their inventory by clicking here.  Outfits that button up the middle are good too.  Why not zipper outfits?  Again at some point the’ll come off all the tubes, but there will remain some leads attached to them to monitor heart rate, pulse ox, etc., and the button outfits will allow the leads to stick out…not so much with the zipper.

And for you, don’t forget to pack clothes for you.  You’re there for a long run, especially if you’re not close to home, so pack a couple changes of clothes.  And dress comfy too, no need to impress.  It’s also helpful to bring something long-sleeve in case the hospital is cold to you.

Swag for Your Warrior

Maybe it’s a fun blanket, maybe a stuffed animal, maybe a mobile.  Whatever it is, your heart warrior is still a baby, even though he or she has gone through some major surgery.  Having those cute baby things there is very sweet.  Nolan is a twin and we believed he was used to being in the womb and hearing his brother’s heart beat, and now he was missing it while in the hospital, so we found this giraffe that would play a heartbeat sound.  The curve of the giraffe’s neck and head fit perfectly along the top of his little head, so we’d snuggle it up to him with the heartbeat sound and I really do think it helped keep him calm.  If you’re arsty, bring some craft supplies or pictures and decorate the room.  It’ll help take your mind off things and bring a personal touch to the hospital room.  We decorated Nolan’s room with snowflakes for the holidays and even put up Happy New Year signs, etc.  On those quiet nights when Nolan was just maintaining, it was peaceful for me to draw him a picture or make him a little sign.  It’ll allow you to bring in a little bit of home, so bring pics of the family along too.

Please Don’t Forget About You

This may sound nuts – you’re there for your kid, after all – but self-care is really important during a hospital stay too.  If you like to read, bring a book.  Put music you like on your phone and pack some headphones.  If you have a hobby that isn’t too loud or weird, bring it with you.  There is A LOT of sitting and waiting when you’re in the hospital, and if you don’t practice self-care, you’re going to lose your mind.  So bring things that allow you to be you every now and then.  Got a favorite blanket and/or pillow?  By all means bring those if it’ll make you more comfortable.  Let’s face it: if you’re in a more comfortable state of mind – as best you can be – you’ll be a bit more focused, you’ll pay more attention, and you won’t feel like you’re constantly stuck in a blender.  It’s ok to think about things for yourself.  IT’S OK.  It doesn’t make you a selfish or terrible person, it gives you a shot to be the best parent and advocate that you can be.

Pen and Paper

This is something I wish I did when we were in the hospital initially.  You are going to be bombarded with emotions and with jargon.  Lots and lots of delicious jargon.  And lots of people will come in and out of the room saying this and that and looking at this or that.  And then when the doctors come to do their rounds, they’ll ask if you have any questions and you’ll be like UHHHHHHHHHHHHHHHHHHH.  So bring something to write in, and write down anything you want: what the nurses and doctors said today, any questions you have, any concerns you have, etc.  And break that thing out when it’s time for rounds.  This will be so worth the effort, trust me.  It will help you be a much more engaged parent.  Maybe you want to journal your experience: write down how each day went and document your Warrior’s progress. I bet that would be something awesome to keep and show them when they’re older!

Don’t Forget the Details

There are other small things that you’ll need to remember or prepare for.  Did you pack your phone charger?  You definitely won’t want to forget that.  What about those clothes you packed?  You don’t want to get funky, so check and see if there’s a washer and dryer on-site that you can use and whether you need to bring your own detergent.  If you’re staying at a Ronald McDonald house or someplace similar, you’ll want to check into that too.  Don’t forget toiletries too!  That goes back to the thing about not being funky.

And how about that hospital food?  We got meal tickets everyday, which was awesome…but after 2 months of daily stops there, it started getting a little mundane, no offense to the hospital.  So look into places to eat in the area: somewhere you can pop in, grab some grub, and get back without losing too much time.  Even better: find if there’s a couple places that will deliver to the hospital.

Have a plan for visitors too.  Some ICUs have restrictions and that makes it easy, but if you don’t want a billion people, including third cousin Ray-Ray and aunt Junebug, then you need to have a plan.  Tell people early, and bluntly, about your plan.  If people are supper offended, let them be…they’ll either get over it or they need to do something else with their time.  Your focus is on you and the health of your child.

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I hope this list is a good starting-off point for you as you prepare to enter the hospital with your new heart warrior.  It’s never going to be an easy trip, so I hope this list makes packing a little easier for you.  If you have more questions about what to pack, please feel free to leave a comment: maybe there’s something I forgot to include!

What Do You Mean “He’s Not Available”?!

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…

What is the Glenn Procedure?

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

Cardiac Cath: “It’s Ok Dad”

The time finally came for Nolan’s cardiac catheterization.  We knew it was the next necessary step before Nolan’s surgery, but we were both pretty nervous about it.  We got someone to watch the other boys while we left the house bright and early to be at Levine Children’s Hospital.  I mentioned before that I love LCH: it’s bright and cheerful and has a very cool and colorful lobby.  This time, though, as we were checking in for Nolan’s procedure, I was just flooded with memories about Nolan’s first surgery and very lengthy recovery.  I quietly asked God over and over to make this quick and painless with a fast recovery…I didn’t think I had the strength to practically live at the hospital again. 

We were escorted up to a room where a nurse had us put Nolan in a gown, which was comedically too big for him, and she took his vitals.  The anesthesia team came to chat with us for a little bit before we were finally told that it was time to go to the cath lab.  Unlike Nolan’s first surgery where he was wheeled there, I got a chance to carry him.  That was good.  I needed that, big time.  As we walked through several hallways and waited for the elevator, I held Nolan closely and tried to whisper confident things to him…all the while my legs felt like jello.  But here’s the funny thing: Nolan had started doing this thing where he really liked playing with my facial hair.  Whenever I would snuggle with him, he would reach up and rub his hands on my face and coo softly.  I loved it.

There, as we waited for the elevator, Nolan did just that.  He reached up and rubbed my face…it felt like he was saying, “It’s ok Dad…I’m going to be fine.”  And then I felt fine.  He’s ok, I’m ok. 

We went down to the cath lab waiting area and continued to play with Nolan and make him smile.  Meanwhile a nurse brought little stuffed animals for Nolan and his 2 brothers.  It was very sweet…LCH is the BEST.  Eventually it was time for them to take Nolan back…and we were escorted up to that big waiting room that I hated so much. 

We got word that the anesthesia took a long time…apparently Nolan is a very difficult stick, and the procedures would finally begin.  While we were waiting, someone with the GI Team brought us this creepy doll (I named it Ming Fu) that demonstrated Nolan’s new G-Tube button, along with some literature about the button and how to remove and replace it.  Wait,what?  Yes…this tube would be pulled completely from his body if it was pulled hard enough…and if that happened, we would need to know how to put it back in.  What the what?  That’s NASTY.  I was NOT thrilled about that idea, nor was I enamored with the fact that we’d be replacing the button every few months.  Ugh what was next?

We got word that the GI procedure was complete and went well.  The doctor came up and explained everything to us and even answered a few questions about Nolan’s diet and spitting up problems (the kid was a faucet).  Then we waited for the cath to be complete.  When that was done, we let out a hugh sigh of relief and were escorted to see Nolan.  He was in a post-op room: he had been extubated successfully and he was quite a bit cranky.  The nurse told us that they had a hard time finding a good place for his anesthesia iv, so they had to go in through his neck.  Poor baby.  He was a little achy from all the procedures, so he got some pain meds and eventually he fell asleep.  We stayed to comfort him, even as he got moved up to Progressive Care.  Within a couple hours, he was doing just fine:

False Start x2

WHOOOPS!  I love this picture because I feel like it sums up what this post is going to be about…

We were nervous about Nolan’s 2nd surgery, but before we even got there, he had to get through a cardiac catheterization first.  We had a date set and were ready to get there…but then Nolan got an ear infection.  No go.  False start #1!  So we had to put him on antibiotic and wait for the ear infection to clear up before we did the cath.  So we re-scheduled.  And we waited. 

Once Nolan’s ears were lookin’ good and we were getting closer to our cath date…Nolan caught a cold.  Seriously?  Ugh.  We were told they wouldn’t do a cath with a cold because they run the risk of the breathing tube pushing secretions further down and having Nolan develop pneumonia.  Don’t nobody got time for that.  False start #2!  Good Lord, can we get some luck here?  It was like one minute we were hesitant about this, but now we just wanted to get it over with!

Finally, Nolan’s cold cleared up…we had a cath appointment, and it looked like we were going to keep this one.  Now that we jumped all those hurdles, it was on to the next one: heading back to Levine Children’s Hospital…

Cardiac Cath Consult

While we were chugging along with Nolan and the rest of our gang, we were told by our cardiologist that Nolan’s second open heart surgery was coming soon, but that he would have to undergo a cardiac catheterization first.  The 2nd surgery was already this monster looming ahead of us, so another “procedure” is definitely not something we were looking forward to.  We had an appointment with another cardiologist who worked in the cath lab.  He was actually a really nice guy…and come to find out he was from Connecticut just like me!  Of course, I had to ask him about a pizza place I love called Pepe’s Pizza in New Haven.  This is my fav restaurant EVER.  He said he was sorta related to the family that owned the place.  I was floored…I instantly liked this guy.  But anyway, on to the serious stuff: the cath was important because it allowed them to look at the heart’s functioning up close to see if he’s readyf or the second surgery.  They would look at his arteries, the Sano Shunt that was put in during his first surgery, and his heart pressures. 

Nolan would be brought in to the hospital for the cath and would be placed under anesthesia before the GI team would come in.  Why GI?  Well to this point, if you recall, Nolan has had a feeding tube since he hasn’t been eating by mouth.  The G-Tube he had isn’t a long-term tube and would eventually need to be replaced by one called the Mickey Button (more on that in another post).  The GI Doctor would remove the old G-Tube and put in the Mickey button before the cath team comes in to do the cath procedure.  This involves entering an artery through the leg and moving a little camera up to the heart to have a look around.  It wasn’t a lengthy procedure, but it was a necessary one…no way around the cath.

The doctor told us that occasionally they’ll see some things like narrow arteries or something like that, and it’s something they can repair right there in the cath: just open it up with a balloon.  They can close things off too if need be.  Of course, if that would be done, it would delay his 2nd surgery until that was fully healed.  The goal of the cath is to ensure everything is a-ok before proceeding with another open heart surgery.  The doctor also said that Nolan would probably be kept overnight at the hospital since most heart babies are slower to get their sats back to normal after the procedure so they give them some time and observation.  The doctor did also say that eeeeevery now and then the sats don’t come up the way they want and they will go ahead and do the surgery within a couple days.  That freaked me out.  It’s enough trying to build yourself up for a surgery, but knowing the possibility it could be in a couple days?  Yeah, scary.  But the more I thought about it, the more confident I felt that Nolan was going to be ok.  We just had to keep praying hard. 

They set an appointment for Nolan’s cath and all we had to do was wait…