June 5, 2018 — Rhythm of Adventure

One year ago, on June 4th, 2018, when Jacob was just two weeks old, we noticed he was breathing faster than normal. Being with him every day didn’t allow us to notice the gradual change, but after visiting with several family members who all felt his breathing seemed fast, we decided it was best to get it checked out. After taking his shirt off and looking at his bare chest as he breathed, we noticed he was struggling. And after counting his respiratory rate, we realized it was in fact much higher than normal.

It was 10pm at night and all the other children were in bed. As nurses, we were looking to make sure everything else was fine. The color of his skin looked fine; he had been breast feeding perfectly. He was sleeping a decent amount, but don’t all newborns sleep a lot? He was slightly puffy around the eyes, but it seemed to be that way since birth. Other than his fast breathing, there were no other signs that something was wrong. We even saw his pediatrician just a few days prior who said everything looked great, other than a small heart murmur which can be common in newborns and goes away after some time.

We even thought about waiting until the morning because we knew regardless of what was going on, we’d be there for hours, we wouldn’t get any sleep and then we’d have four kids to deal with in the morning. Little did we know, we wouldn’t be getting sleep for days.

I texted my parents to let them know we were thinking of going to the hospital. They happened to be a minute away, just up the street, and encouraged us to go right away. They both came over and we said our goodbyes and planned to be back before the morning.

Jacob slept on the way to the hospital and we discussed all the possibilities of what could be wrong. We knew they’d probably do an x-ray and an EKG. Justin didn’t think they’d do an echo because he knew there wouldn’t be anyone to do it until the morning unless it was very emergent. We really had no idea.

When we first arrived to the hospital, we were taken back to a room immediately (perks of having a husband who works in the ED, but in hindsight, he was in fact very sick). I remember I posted a picture to Instagram saying “say a prayer for Jacob, we’re in the hospital having some tests done since he’s breathing a little fast”. I decided to breastfeed Jacob as soon as we got there because sometimes doctors won’t allow them to eat if they’re doing tests and what not. I didn’t even ask the nurse, I just did it. And I’m so glad that I did because that was the last time I breast fed him for over a month.

”Say a prayer for little Jacob 🙏🏼 he’s been breathing very fast and he has a murmur. Staying overnight to have tests done.”

As soon as someone came in to see Jacob you could tell they were concerned. They had that look. His oxygen levels were slightly below normal so they had one of us hold oxygen near his face so he could breathe it in. They did an EKG and an x-ray and we waited. And waited. No one came to tell us anything until a few nurses from the NICU came to get us. When I asked why we were going to the NICU, they asked if we had seen his x-ray and informed us he would need more tests.

On our way to the NICU, she informed us that “his heart was almost the size of his entire chest. We’ve never seen an infant’s heart that big before!”

In that moment I had no idea what that meant. I remember asking her why his heart was so big and whether or not his heart would go back to normal size. I was so clueless. The nurse told us that he needed an echo to find out what was really going on. I think we asked her a million other questions and we got very little answers. A doctor brought us over to show us Jacob’s x-ray and we were still so clueless. You could see his heart had filled up his chest, but I still didn’t understand why or what the outcome would be.

That was when the panic set in. We knew something was terribly wrong. We could hear Jacob crying. You could see them trying to get several IV’s in without any luck. It was one of the worst moments of my life. He was breathing even faster at this point. His blood pressure was dropping. All of his vitals were bad. They still couldn’t get an IV in. I knew he was hungry at this point but they wouldn’t let me nurse him. That was when I lost it. There was nothing I could do for my baby. I had to just sit there and watch him suffer.

Meanwhile, a group of medical students came in to see Jacob because “we’ve never seen an infant with a heart so big so I’d like for them to see how he presents”. In that moment I was just furious. My dying child was a spectacle for these doctors. No one was able to comfort him. We didn’t know if he had minutes to live or hours.

I texted my parents something along the lines of “It’s bad. Jacob is very sick. It’s his heart. He’s going to die”. I can’t imagine how they must have felt in that moment. A dear friend, Sophia, happened to be awake at 12am when I posted the initial photo of Jacob on Instagram so she was texting me to see how he was doing and probably received a similar text.

Around 3am, a cardiologist named Dr. Putman came in to do the echocardiogram. It was nice to have him there because I knew we’d soon find out the fate of Jacob. Dr. Putman was cool, calm and collected. He spent what seemed like hours doing the echo. We didn’t want to disturb him until he was done so we waited. It was probably only 30-45 minutes in reality.

Eventually he called us over. I don’t even think we realized he was in cardiogenic shock or severe heart failure in that moment, but Dr. Putman knew.

He slowly showed us his heart and explained that he had a parachute mitral valve and a large VSD. He explained what that all meant. He explained that normally with a parachute mitral valve you see other heart defects that he doesn’t have, so he was spending more time making sure there wasn’t anything he missed. He also said that in all of his years in pediatric cardiology he’s never seen a child present so sick having these heart defects. He told us that we needed to go to The Children’s Hospital of Philadelphia because he will need to have more tests done that they will be able to do. All I knew about CHOP was that really sick kids go there and here we found ourselves needing to go there.

Honestly, I think he knew that Jacob would need to go on life support and that if he survived he would need open heart surgery and he knew that CHOP was the place to be. In that moment I was overwhelmed but looking back now I realize what an angel Dr. Putman was in that moment. We later found out that they wanted to intubate Jacob prior to his flight to CHOP, but Dr. Putman insisted they wait and let CHOP do it. And thank God he insisted they wait because being intubated at CHOP was ultimately what led him to needing CPR and life support. If they did it at SBMC I don’t think he would be alive today because his heart was just too severely failing.

After we knew we needed to get to CHOP it was just a waiting game. We found out that CHOP has their own staff and helicopters that they use. So we needed to wait for the next shift to start at 6 or 7am and then for them to fly to SBMC.

While we waited, the staff continued checking his vitals which were still not good. I think they were able to get an IV eventually so that torture had stopped. He was still crying, probably for so many reasons, but I knew one was because he must be so hungry. As a nurse myself, I knew food wasn’t a priority, but as a mom I knew it might make him even just a little happier in that moment. Poor boy. I want to cry now just thinking about it.

The next few hours were some of the darkest hours of my life. I literally started planning out Jacob’s funeral. I thought about how I’d have to tell Josiah that the new brother he was so excited to have was actually dead. I was so angry with God. I was upset when I found out I was pregnant but eventually grew to love the child I was carrying and fell more in love once he was born. Why would God even give me a child only to take him away at two weeks old? At one point I remember telling Justin that I didn’t even believe there was a God. It was bad. I didn’t know what to do. I paced the hallways. Justin tried to calm me. I just kept saying over and over again that he was dead; that he was going to die. The bathroom was the only place I could cry and let it all out. I remember going in to that bathroom in the NICU multiple times to cry so hard. I needed to pump since I wasn’t able to breastfeed, but I remember saying to Justin, “What’s the point? I’m never going to breastfeed him again”.

Around this time, I had texted my dad letting him know that Jacob had to go to CHOP. Shortly after I sent that text he showed up in the NICU. He was very calm and tried to keep us all calm. I knew he was just holding it together for us. Meanwhile, my mom was still at home with our three other kids.

Finally, on June 5th, 2018, the helicopter arrived around 8 or 9am and there was a whole team of people that were going to be taking the trip with Jacob. They would only allow one of us on the helicopter. So Justin and I had to sit there and discuss who wanted to be on it in case he died on the way. Who would be ok missing it? Who would be ok being up there with him if something did happen? Who would be ok flying without getting sick?

Justin was so exhausted at this point and there was no way I was sleeping, so we decided that I would go and Justin would sleep in the car while my dad drove him down to Philadelphia. I also knew I wouldn’t be able to sit in a car for 2-3 hours knowing my son could be dead and I’d have no clue. I didn’t want to arrive at CHOP and not know where to go either. I was already having a panic attack.

Justin and I gave Jacob kisses and then the nurse from CHOP loaded Jacob into this little cocoon filled with monitors and wires and sealed him up. My dad, Justin and I followed them all down this long hallway and out to an ambulance. The ambulance took us around the hospital to the helicopter pad and that’s when I said goodbye to Justin and my dad. My dad was holding it together. Justin and I were crying. It was a very difficult moment.

The pilot was very friendly and explained everything to me. He showed me the headphones and how I could listen to everyone speaking. I knew that if Jacob was to code I’d be hearing all of it over the headphones so I asked him how I could turn the sound off if I needed to. I even joked about him being a good pilot and if he’s flown a lot. He told me he flew for the coast guard so that was reassuring.

Everyone was secured in the helicopter and that’s when the wings started turning. It was such a surreal moment. Like a scene from a movie. We lifted off the ground and I could see my dad and Justin standing on the edge of the parking lot. The wind from the helicopter was so strong. I could see my dad’s hair blowing all over the place. At this point, these two strong men in my life lost it. I could see my dad standing up with both of his arms reached up to God, sobbing. A security guard came over to check on them because he could hear their cries.

As we got up into the sky, I felt such peace. I can’t explain it. I felt like God’s angels were carrying us to CHOP. No one was talking. It was just silent. I could see for miles. It was a beautiful morning with blue skies and white fluffy clouds- perfect flying weather. In that moment I could feel God’s power. I felt so small and God felt so big. I’m sitting here speechless as I type this, just thinking back to that moment. It truly was a beautiful moment that I will always cherish and I know God was with us.

Eventually, I could see the city skyline and the pilot was pointing out all the buildings. I didn’t hear anyone talking in the back so I was just praying that meant Jacob was doing alright. We landed and immediately went to the CICU (Cardiac Intensive Care Unit). When we arrived, the flight nurse told me that his vitals were stable and he slept the entire flight. I get chills just thinking about it. God kept him alive for that flight and gave him the rest he needed to get through what was to come at CHOP that day.

In the CICU, I felt like I had arrived in an episode of House. Jacob was instantly surrounded by about 15 different doctors and nurses. I had no idea what was going on. I was texting Justin letting him know that we had arrived and Jacob was still alive. He asked what they were saying and all I could understand in-between everyone talking was the word epinephrine. Working in the ER, Justin knows if someone needs epinephrine it has become a code situation. Fortunately, he wasn’t coding in that moment but Justin thought that was what I meant. He later told me that in that moment he thought Jacob was dying. He said his hands went numb. He had never experienced anything like it. He yelled and screamed out. My poor dad, driving the car probably didn’t know what to do. I don’t know why they said epinephrine at that time, maybe they did give it, but Jacob survived that moment. On the way to the hospital, Justin tried talking to his mom but he couldn’t even get the words out to tell her what was going on.

Eventually, the charge nurse came over and asked if she could show me around the unit. I didn’t want to leave Jacob, but I knew I wasn’t going to be of much help with all of the medical team there. She showed me around the unit, where the sleep rooms were, the showers, kitchen, etc. Once I got back to Jacob she found a breast pump for me to use. At CHOP I felt like there was hope and I knew I needed to keep breastfeeding.

I continued updating Justin on what I could and shortly after, him and my father arrived.

The following days were a blur. We had doctor after doctor, specialist after specialist, coming up to us and asking us all kinds of questions. They performed test after test, not only on Jacob but on Justin and I as well. The top cardiologists in the world couldn’t tell us what was happening with Jacob and why he was so sick. They kept telling us that they’ve seen plenty of kids with these heart defects, but none that presented so ill. They also told us they’ve never seen a heart failure level so high. It was so high that it was reading as “>25,000”. They couldn’t even give us an accurate number because the test didn’t go high enough.

Eventually he started declining more quickly and they knew they would need to insert a breathing tube. The doctors knew that his heart might not be able to handle it, so they told us about ECMO aka life support. They told us they would have a team ready to go with the ECMO machine if things went bad during the intubation. Well, things did go bad and he needed not only ECMO but CPR. I didn’t realize it at the time otherwise I would have lost it. The ECMO machine connected to a large artery and vein in his neck and basically took all the blood out of his body and through a machine and then back into his body. It was a way to let his heart rest.

The following days were a miracle. By now, several people knew what was going on and the prayers were coming in! His heart was going back to a normal size! They couldn’t explain it. It was the first bit of hope we got and we were beyond thrilled. He still had the defects that needed to be addressed, but he was getting better. We thought there might be a chance at survival.

The team still needed to do some risky tests including multiple cardiac catheterizations so every day seemed like a roller coaster of emotions. Jacob would be doing better and then we’d be signing consents for tests that could ultimately end his life. It was so terrifying but we continued to pray and trust God was in control.

At first, the doctors were hoping that we could delay any type of surgery since his heart was back to a normal size and he seemed to be doing better. Unfortunately, every time the doctors tried taking him off his medications he would decline again. That was when we knew Jacob wouldn’t be leaving the hospital until he had open heart surgery.

The next hurdle was deciding what defect to operate on. Again, he was a very complex case and so the doctors weren’t sure what the best option was. Should they close the holes and leave the parachute mitral valve alone? Or was the mitral valve the bigger issue and they should repair that? There were even talks of heart transplant because his heart couldn’t sustain without medication it seemed. There were so many emotions during this time. So many sleepless nights. I never wanted to leave Jacob’s side.

The doctors decided they would wait and discuss Jacob’s options at a conference they hold every Tuesday. It is a room full of the top cardiologists in the world. And they were talking about my Jacob?? It was so surreal.

Unfortunately, that weekend took a turn for the worst. It was Father’s Day 2018 when they told us Jacob would need open heart surgery that Monday, June 18th. It was such a difficult moment. In your mind you know he needs it to be better, but in your heart you can’t even handle thinking of your baby being opened up like that. Why did Jacob have to get so sick just a couple days before this conference where they were going to have a better idea on what to do. It was scary. We really had to just sit back and pray the doctors made the right decision.

Ultimately, it was decided that they would put a patch over his large hole, the VSD, and they would try to stitch up all the little ASD holes. They would restart his heart and if the blood seemed to be moving through properly they would leave the mitral valve alone. To perform a mitral valve replacement or repair is very risky because there hasn’t been anything invented that can grow with the child’s heart as they get older. So a mitral valve surgery would mean a lot more surgeries down the road.

It was now Monday, June 18th. A nurse took us up several floors to the doctors wing. We met with Jacob’s surgeon, Dr. Mascio, and he explained everything to us. We kissed Jacob goodbye and put him in God’s and Dr. Mascio’s hands.

The next several hours we spent distracting ourselves. I’m pretty sure Justin was exercising at a nearby gym the entire time. Our other kids and parents were visiting the hospital so I ended up distracting myself by playing with them.

Then we got a call from a nurse that he was out of surgery. Man, talk about your emotions being out of control. We arrived to his room and you could barely recognize him. He was so swollen. He had wires and tubes coming out everywhere. It was intense. It was a lot to handle. But Jacob survived. Jacob survived open heart surgery!

The days and weeks to follow were difficult. We continued trying to take him off of his medications but he would decline again. It was a very slow, emotional process. Eventually, we were moved to a step down unit, the CCU. I was terrified to leave the CICU. In the CICU, it was one nurse for each patient. In the CCU, it could be at least a few patients for each nurse. The care was completely different. But it also meant Jacob was getting better so it was nice.

Finally, on July 14th, 2018 Jacob was discharged from The Children’s Hospital of Philadelphia. The doctors didn’t want us to drive all the way back to NJ just yet so we stayed overnight at the Ronald McDonald House in Camden, NJ. In the morning we had to go back to follow up with his doctors. Once we got the all clear, we were heading home to New Jersey with our Jacob!

I remember getting home and seeing our bedroom, similar to the way we left it. It was like life had frozen in time for those 6 weeks we were in the hospital. When I thought he was dying back in June, I remember thinking about going home without him and how awful that would have been. To see his clothes and his crib and everything and to be without him. I weep for the parents who have had to do that. I pray for them often and I thank God he spared me from that reality.

So today, June 5th, 2019 I rejoice. I thank God that I can hold Jacob in my arms and kiss his sweet cheeks.

One year ago, Jacob almost died. Instead of mourning his death on June 5th, I get to celebrate his life. Thank you God and thank you to those who prayed relentlessly for this boy!

To God be the glory forever and ever. Amen!