Monthly Archives: November 2013
As January 2012 gave way to February, I knew exactly what I wanted for my birthday: for Nolan to be home from the Hospital. Fortunately, we had some progress in this regard. One day my wife texted me that Nolan was going to be moved from CVICU up to Progressive Care. Like I mentioned in my last post, this was absolutely bittersweet. I mean, while no one wants to be in an ICU for any reason, we felt pretty spoiled by the CVICU staff: they took awesome care of Nolan AND us. Every night I was there, I was asked by a staff member if I would need a sleep room. I wouldn’t, because I had to be home with the other kids, but the gesture was nice nonetheless. On the other hand, going up to Progressive Care was a clear sign that he was getting closer and closer to coming home!
A little later on in the day, my wife texted me Nolan’s new room number. I had a break in the day so I called her to ask how everything was going. Her reply: “I don’t really like this floor as much.” When I asked why, she said that the nurses had more patients than the 1-on-1 care we got at CVICU and that it was lengthy periods of time between someone coming in to check on Nolan.
I hoped that things would improve and this was just a temporary bump. I HOPED. But when I got home, Bekah confirmed what she mentioned earlier. So I scarfed down dinner and headed down to the Hospital. I got up the Progressive Care floor, having never been there before, and was pretty amazed. There were a TON of rooms…and it was super-loud. Lots of noise in the hallway and people talking in nurses stations and whatnot. Definitely not the peace and quiet I was used to in CVICU. Regardless, I went to Nolan’s room and found him asleep…and alone. That was pretty depressing. I looked around for a nurse but couldn’t find one. So I went to the nurse’s station and waited and waited until someone decided to notice I was there. I asked for my son’s nurse and was told she’d be in to the room momentarily. I waited…and waited. Finally the nurse came and I asked her the same set of questions I’d ask the CVICU nurses: how was his day and what is his weight? The nurse gave a non-specific “He’s having a good day” and then said “Let me go look up his weight, I’ll be right back.” Yeah, she didn’t come right back. About an hour later she returned with a scale to weigh him. Ugh. Was this was Progressive Care was like? You gotta be kidding me! His room was much smaller than his previous one, so all his bouncy seats and whatnot took up a ton of space, to where you almost couldn’t move around.
After the weigh-in, I didn’t see the nurse again for the rest of my visit until I was ready to leave. I went to the nurses station to get the phone number for that floor, so I can call routinely during work hours and get updates on Nolan. To make it worse, I had to go home and leave Nolan there. On my way out I saw his nurse…I practically begged her to check on him routinely since he was going to be alone. She assured me she would. I hope she did.
On the way home, I was really bummed out. I couldn’t get the thought of my almost 2-month old laying in that bed all day with very little interaction in terms of nursing visits. He went from being rocked by CVICU nurses to being practically ignored. That night, I couldn’t sleep. I was consumed with trying to figure out how to get Nolan some more love and affection when I or Bekah couldn’t be there. I didn’t have a ton of PTO time for work, so I couldn’t take time off…maybe they’d let me work from the hospital? No, that wouldn’t work. It was so frustrating.
I went to work the next day and called Progressive Care about 4 times to check on Nolan. I’m sure they got annoyed but I didn’t care. That’s my son. You know what they say about the grass being greener…well so far, the grass definitely wasn’t greener…
It was so nice to be able to visit Nolan and see some definite progress on his part. While he was using an NG tube for feeds instead of bottle feeding, he eventually began breathing completely on his own, and the number of meds he was on was less and less. Soon we could hold him with the only thing being attached were his monitors. It occurred to me that this was the first time since NICU back in December that I had seen him tube-free.
The CVICU staff continued to be awesome: they would hold him during the day, and oftentimes I’d come in to find his nurse sitting in the recliner just holding him and talking to him. It was pretty special: I can’t continue to say enough about how great that staff is. They even had a mobile brought up to his room so he can enjoy the sights and sounds, and they brought up a bouncy seat for him too. It was like our son was moving from critical life to more normal life.
Eventually we began to try to have discussions with the staff about his possible discharge. Namely we wanted to know if they would discharge us right from the CVICU. We were told, though, that kids typically go to Progressive Care and are discharged from that floor. While it was nice to have the going-home conversation, it was kinda sad to know we’ve one day leave the CVICU and be under someone else’s care for awhile. Definitely bittersweet.
In the meantime, though, I kept coming in to see him and I would hold him (unless he was asleep or cranky) and we would talk about all sorts of stuff. And I never stopped calling him my hero…
I know this far I’ve been chronicling our journey with Nolan, and I really thank you all for taking the time to read this blog. I hope that it’s given some of you heart dads an insight into the roller coaster ride that is being a heart parent. Hopefully for those who have gone through it, this blog shows that you’re not alone.
I wanted to take a small break in telling Nolan’s story to talk about being thankful, since tomorrow is Thanksgiving. Yes, it’s going to be a day where we eat ourselves into a coma, watch football, maybe put up a Christmas tree, maybe line up for Black Friday, etc. But as I look back on the last year with Nolan, I really have a lot to be thankful for: and when you really think about it, sometimes the thanks can seem a bit unusual.
While finding out early about Nolan’s condition was bordering on soul-crushing, I’m thankful it happened when it did. In some way I was able to educate myself and try my best to prepare (even though there’s no complete way to be prepared). There are a lot of babies that are born with congenital heart defects who aren’t so lucky. They’re born, look normal – just like Nolan – except they go home within a couple days. And that’s where the trouble starts and before you know it you end up back in the hospital…that is, if you’re so lucky. Many hospitals aren’t equipped to deal with CHD babies, much less recognize them. Heck, the hospital where we originally planned to have the twins doesn’t even have a NICU! So yes, I’m thankful we found out early: thank God for a ultrasound tech with good eyes and a cardiology team that is AMAZING.
I’m thankful for Levine Children’s Hospital: for the kindness showed to us by all the staff. For the bright colors and cheerful decor. Trust me, when you spend 2 months daily in a place, you notice that kinda stuff. I’m thankful for their volunteers, the doctors, the nurses, the CNAs. I’m thankful for the window washers who dressed up as superheros and rappelled down the building the brighten the kids’ day. A Children’s Hospital is definitely not a place you want to be by choice. We had to be there, and I honestly believe LCH is one of the best around.
I’m thankful for my wife, who often juggled so many schedules, complete with multiple pickups and drop-offs, just so we can go see Nolan at the hospital. She continues to be a rock and an amazing mom and wife. When I told people about this blog I heard a few stories about dads who abandoned their families once they found out about a CHD diagnosis. Those guys are cowards and they’re weak. Nothing less. I cannot imagine being a single parent going through this, so I’m grateful that I get to take this journey with my wife by my side.
Now for the crazy part. In some weird way I’m thankful for the fear, the rough emotions, the waiting, the meds, the sleepless nights, the nightmares, the anguish, the worry, the anger, the impatience, the doubt, the exhaustion, the crying….because it reminds me that there’s so much more to life than me and my comfort. I have a job to do and that’s to be a great husband and an awesome dad. Yes, I’m tired…and yes, sometimes I whine about it…but it’s all about perspective. Nolan is surviving and thriving and I thank God every day for it! There are kids and families that are worse off, that are going through tremendous struggles: they don’t know where their next meal will come from or where to call home. Perspective. It’s a powerful thing, and I’m thankful for it. I tell everyone that ever since Nolan was born, my life changed. I have to speak out for Nolan and other HLHS babies because that’s the life I’ve inherited and the life my son will live. And you have to learn to be thankful for every smile, every laugh, every breath, and every waking morning…because it’s the hard stuff that leads you to the great stuff.
Happy Thanksgiving Everyone!
It was so great to have Nolan off the ventilator! He was only getting oxygen via a nasal cannula and he was alert and progressing bit by bit every day. Sometimes I worried about him being in pain, but the nurses assured me that the meds he was on was keeping him in la-la land, but without being completely sedated to the point where he was knocked out. They likened it to being on laughing gas. That was ok with me, I guess. The cool part was that my grandmother came down from Connecticut to visit us: it’s always good to see her, especially since she gets a chance to see all of her great-grandkids. I know not many people get that opportunity. Oh yeah, and the awesome food she makes is a MAJOR perk 🙂
Grandma with Grant:
Grandma with Hudson:
One night I decided to take her to see Nolan in the hospital. She had gone once already to see him, but this time it was just the two of us. This night, though, I really wish my Grandmother didn’t come. We got to Nolan’s room and as usual I asked the nurse how he was doing. She said they were continuing to back him off of oxygen to see how he would do on his own and that he was doing ok. I looked up at his monitor and noticed that his respiratory rate was a lot lower than usual. I pointed this out to the nurse and she was like “That’s ok: as long as it doesn’t go below 20 or so, we’re fine with that.” Then she went out to the hallway so we could have a visit. I can’t exactly remember how long we were there, but I noticed that Nolan’s respiratory rate started to go down, down down, til it was right at 20. Then suddenly it dropped down to 10, then to 6 and I ran to get the nurse and the respiratory therapist. They jumped right into action and I jumped right into freaking out. I was pacing back and forth and was really nervous and it was rough on my grandmother too. The respiratory therapist basically lifted Nolan off the bed and began to massage his back…as long as he was doing that, Nolan was breathing ok. If he stopped, his breathing would putter out. I felt like I couldn’t breathe either, this couldn’t be happening.
Finally one of the doctors came in…she looked like she was 14 years old and I don’t remember ever meeting her. She pow-wowed really quick with a couple other people and then quickly told me, “Ok here’s what I think it is…the sedatives are a little too strong and he’s used to being on the ventilator so he’s relaxing too much, expecting the vent to kick in. We’re going to give him a medication that will pull him out of sedation but not so much that it will put him into withdrawal.” I was like “Wait, what?” And I asked her if she was sure it would work. She told me she thought so, but you just never completely know. The respiratory therapist continued to massage Nolan, I continued to pray and freak out.
An eternity later (or so it felt) the meds arrived and were administered. We all watched, and I really think we were all holding our breath. Ironically the only one seeming to be breathing was Nolan (as he was being massaged, of course). Within minutes, his respiratory rate jumped up, the Respiratory Therapist put him down, and he was breathing just fine. JESUS. That was…just, wow. Crazy. I thanked the female Doogie Howser and the rest of the staff, then gave Nolan a kiss on the head and gave my Grandmother a big hug. Then I watched Nolan like a hawk and his respirations stayed strong. Thank God for a smart, quick-acting doctor and staff. They are incredible and saved Nolan from a definite emergency.
Before I had to leave for the night, I leaned down close to Nolan and said, “I love you…but don’t do that again. EVER.”
One day during the week in January, my wife texted me to let me know they were going to try extubation again. I was hoping this didn’t turn into the chest-closing saga, so I prayed hard that this would work. And it did! He got the tube out of his throat and was on bi-pap for a little bit and did so well, they just put him on a nasal cannula for a tiny bit of oxygen. Success! Chest closed? Check. Breathing tube out? Check. Next up: get the heck outta the hospital!
But, as usual, that would take a little bit of time. Anyways, it was super difficult to concentrate on work because I couldn’t wait to go see Nolan and hold him. I got there and the nurses were happy and so was I. Even the doctors and nurse practitioners were happy with Nolan’s progress. Life was good. The best part: I didn’t have to sit next to Nolan, I got to sit with Nolan.
Life was really good. This is what I waited weeks for. Seeing him without that tube in his mouth that would make his lips look all twisted sucked, but now I could see his little lips and his little nose and even hear him cry. Oh the cries. Who would’ve thought that I’d be so happy to hear a baby cry! So that’s how it would go: I could hold Nolan and talk baseball, tell him my corny jokes, doze off together…whatever. It was just great we were doing it together.
While we waited for Nolan to be ready to finally breathe on his own, we noticed that he was becoming much more alert when we would visit. He would open his eyes sometimes and look at us and even squeeze our fingers. It was a really nice thing to see, plus respiratory said he was making some really nice progress on his breathing. Here’s Nolan with his big eyes open:
Of course, I have to begin training them early:
Nolan was especially happy to spend time with his mommy:
One thing that was the hardest during Nolan’s recovery was the fact that we couldn’t hold him. There were days where Bekah and I wanted nothing more than to scoop him up and love on him. One day we were telling one of the nurses that we couldn’t wait til he was extubated for good so that we could start holding him, and she said, “Wait, you haven’t held him? No way, we can make that happen.” So she did make it happen, and one day while I was at work Bekah got to spend some time holding her little Nolan:
One day I went to visit Nolan at the CVICU and one of the nursing supervisors was in there. I think it was a Saturday or Sunday because it was during the daytime, so it couldn’t have been a work day. Anyway, we were chatting about Nolan’s progress and pretty much they had been working with respiratory to wean him off the breathing machine in an effort to get his breathing tube out. And she said “I think we’re going to try to extubate him today.” And was like “Really? When?” I wanted to be sure to tell Bekah: she was home with Grant and Nolan. She said, “We’ll do it within the hour.” WOW. That was fast! I texted Bekah about it and then when the time came, I went down the hall to the Quiet Waiting Room.
The Quiet Waiting Room is the secret weapon of the CVICU floor. There’s a regular waiting area with TV and coffee and all that jazz. But the Quiet Room is a big open space with low lighting and it’s completely lined with comfy chairs and recliners. I have taken MANY a nap in that room because you can turn the lights out completely and almost no one ever goes in there. So this day I went down there and told the nurse just to call my phone when they were done. I couldn’t sit down, though, so I pretty much paced the entirety of that room praying really hard that this extubation would go successfully and that he would get so much closer to going home. Finally the call came and I could come see him.
I rushed to his room and saw my little guy in his bed. The tube was out of his throat and there was a different one on his nose called bi-pap just to give him a little help but that mostly he was breathing on his own. Poor Nolan looked really pale and his chest was moving up and down pretty hard. I held his hand and he looked at me and his eyes looked really sad and almost scared. I felt bad for him. I knew extubation was a good thing, though. He was making this little, quiet, raspy cry…which was the first time I heard him make a sound in over a month. While he was intubated, it looked like he would try to cry or cough, but the tube in his throat made it impossible.
Unfortunately, it was short lived. Over the next few hours, Nolan showed that he wasn’t quite ready to be off the breathing tube, so they would have to re-insert it. Somehow, it wasn’t as frustrating to me as the multiple attempts at chest closure, I was just sad that the stupid tube would have to do down Nolan’s throat again and I couldn’t imagine what it felt like. Sigh.
Now that Nolan had a successful chest closure, all we had to do was continue to get him off the meds and then get that breathing tube out. On one hand, it felt like the hard part was over, but in reality there was still a lot left to do. Nolan was doing well, though: he’d open his eyes and look around a little bit and some of the meds were going away. We all kept doing our routine of juggling kids and work to go spend time with Nolan. It was exhausting but necessary: I wasn’t gonna miss a single day with Nolan. Suddenly, though, a weird thing happened to me. I started to lose my grip.
I don’t know why, and it wasn’t tied to one particular event or circumstance. It’s just like I woke up one day and felt like I was completely unraveling. I would fell really bummed out, and even though Nolan was showing slow progress, it didn’t feel so great to me. I felt completely disinterested in just about everything, kind of like I was walking in quicksand or some crazy fog. The Children’s Hospital is attached to the main hospital here, so you have to pass by the main hospital to get to the entrance to Levine Children’s. And day after day I’d see happy parents trying to figure out their car seats so they can bring their newborn babies home. And I wasn’t happy for them, I was jealous. I just wanted Nolan to be home already so we can be home. The worst part was usually I would go and sit with Nolan and always pray for him. This time I found myself sitting next to his little bed and asking God just to help me get through it all. I felt like somehow it was my fault things were progressing so slow, and it was my fault that I couldn’t spend as much time with Nolan or with my other two boys. Then I’d go to work and feel like I couldn’t do anything right. Ugh, what a mess I was.
One day at work I decided to chat with one of our chaplains, whichever one happened to be at the office at the time. This time it was Carl. I explained things to him and he listened and just kind of nodded and said “You know, maybe you should try taking some time and write down something every day that you’re thankful for. That could help put things into perspective.” That’s all. No fiery scripture-quoting, no organ, no laying on of hands. So I did just that: I went to my office and grabbed a scrap of paper and began to write down a few things I was thankful for: my wife, my family, my home, working cars, a good hospital, food, running water, the ability to get out of bed in the morning, the ability to breathe on my own….
And just like that I felt WAY better. Ok so it wasn’t so bad after all, I was just being super-hard on myself due to all the stress we were under. That night, the visit – and future visits – with Nolan went much better. The drive to the hospital didn’t bother me, the parents loading up fresh newborns didn’t bother me, and I kept praying for Nolan and calling him my hero.
The HLHS journey is a very long one with lots of good moments and lots of bumps too. You can’t ever compare an HLHS baby and a healthy baby side-by-side, you always have to put things in perspective. Just remember: if your little one is doing well, and you’re doing well, then all is good. Everything else is a bonus.
I remember being at work one day when I got a call from the weird 1-390340928302984 number, which meant the hospital. Usually these make me briefly nervous as I never know what to expect. I answered and it was Nolan’s nurse, she was like “Hey Chris, Dr. Peeler would like to speak with you.” I became more nervous because I was worried something had gone terribly wrong, I remember that I suddenly stood up in my seat in the middle of my office. Dr. Peeler came on the line and was to the point: “I’d like to close his chest up and need your authorization.” I was like:
There was a long pause before I was like “Ummmm….so what makes you think he’s ready now? I mean, this is the third attempt.” Dr. Peeler gave is own long pause, “Well…….the swelling has gone down. It’s as good a time as any.” I sighed loudly and gave him the ok. I figured that if anyone knew what he was doing, it was Dr. Peeler, but I just had my doubts due to the past 2 attempts. Then I waited….and waited. I definitely couldn’t concentrate on my work, so I decided to have lunch in the conference room with some co-workers in the hopes they’d keep my mind off it for a bit. Yeah right, all I did was push around my food with my fork and my co-workers knew what I was waiting for. Finally the phone rang: 1-3907239071241242114. I jumped right up and ran into the closest empty office. Before answering the phone I was like OHGODOHGODOHGOD.
It was Dr. Peeler. “Mr. Perez, we successfully closed the chest.” I was blank. Say what? The first thing out of my mouth was “Are you sure? Like…are you SURE?” As if Dr. Peeler is not some world-renowned pediatric heart surgeon but some dude off craigslist or something. His answer was something like “Yes, he’s stable and it looks good.” He could’ve easily said “Hey moron, I know what I’m doing, ok?” and I wouldn’t have been offended because I was PUMPED. I thanked him a billion times before he handed over the phone to the nurse. I thanked her too then excitedly called my wife. We were both still a tiny bit skeptical considering the past attempts, but it was hard to keep in the joy. I walked into the conference room, where my co-workers waited anxiously and I said two words: CHEST. CLOSED. And they cheered. And I was like:
I couldn’t wait to get to the hospital that night. The first big step post-surgery was done and he was looking strong. I also realized that it was January 10th, which was Nolan’s one-month birthday:
Yeah that was pretty much me over the course of some weeks. Christmas was over and I was basically in the same routine as always: work, home, hospital, home, repeat. And I was like out of my mind completely. Some days I was exhausted. Some days I was irritable. Some days I was none of the above, I just kinda stared off into space. I found myself getting super forgetful: like I’d step out of my office, go 20 feet down the hall, then completely forget what the heck I was just about to do. Parts of my work day were routine too: call CVICU, ask for Nolan’s nurse, get an update. It was my way of keeping connected so I didn’t feel so off the deep end. I really wished I could spend more time with Nolan…but I had to work, there was no doubt about that.
Meanwhile, the heart team decided a different tactic with Nolan’s chest: as the swelling went down, they would basically push both sides of his chest together little by little every few days and then put this bandage over it to hold it in place. Inch by inch it went and his numbers kept holding steady, so that was awesome. All the while, Nolan kept improving enough to lose one med here and another med there, so that instead of like 20 pumps he was down to 10 or something. Hooray for improvement. Each night was the same, though. I’d go in and check in with his nurse, then wash my hands, then pull up close to Nolan and talk quietly to him. I’d pray for him, and most importantly I would always tell him he was my hero. I couldn’t imagine if it was me in that bed: I know for a fact I wouldn’t be strong enough. Some nights I would read or surf the web on my tablet; some nights we would jam out to Needtobreathe. Whatever I did, though, I always did it close to Nolan.
I tried to maintain a festive atmosphere in Nolan’s room, if all else for my own joy. We put up signs and pictures of his brothers, and I even went on the interwebs to look up how to make paper snowflakes, and I spent a couple nights doing that. The first one, I gotta tell you, came out kinda ghetto looking. And I mean GHETTO. It was squat and weird, but once I got the hang of it, those snowflakes looked dope. Nolan’s nurse (can’t remember which one at the time) tried to laugh at my ghetto snowflake…I called it unique. I even wrote out Deuteronomy 31:6 on a card and attached it to the side of his bed. I’d like to think that it was to encourage him to be strong and courageous, but you KNOW it was really more for me. I constantly needed that reminder.