Our heart warrior’s arrival and the longest month

You know when you keep putting something off, the task somehow becomes more and more daunting as a result of your procrastination? In part that is what happened with this blog post and in general with my lack of sharing on my blog and instagram account. This post is a long time coming. Our heart warrior Emmett was born almost 8 weeks ago, at the end of October and we’ve been home from the hospital for 3 weeks now. It’s been a rollercoaster of events and emotions, and I initially didn’t have the time or the mental capacity to process and write about the events that took place after Emmett’s birth. However, I finally feel ready now to share about our month long experience, and by some miracle was able to carve out enough time to write in the midst of the craziness with 3 kids.

As you know, Emmett was diagnosed at my 20 week anatomy ultrasound with Tricuspid Atresia, a severe type of congenital heart defect (CHD). Because of his diagnosis, I was receiving prenatal care at Riley Hospital for Children in Indy, as it’s ranked #5 in the country for Pediatric Cardiology (such a blessing to be so close). Because of the seriousness of his heart defects, I needed to deliver in Indy where Emmett would be receiving care immediately after birth. The initial hope was that Riley’s new Maternity Tower would be open by Emmett’s arrival and I could deliver right there at Riley. However, due to Covid staffing issues, the grand opening was delayed, and therefore my induction was scheduled at another hospital a couples of miles away. One of our many questions (and worries) going into it was whether Emmett would be able to stay in the NICU at Methodist hospital or would be whisked away to Riley immediately after birth, leaving me at Methodist separated from my new baby until my discharge. We were told prenatally that it’ll all depend on his condition after birth, and we just won’t know how stable he will be until he’s born.

Therefore my induction was scheduled at 39 weeks to ensure I wouldn’t go into labor on my own since we live about 2 hours from Indy. We were prepped that if I happened to go early, we would risk a helicopter or ambulance transfer, complicating an already complicated situation. Thankfully I made it to my induction day, and jokes on us because Emmett needed some coaxing to join us earth-side. It definitely seemed like we were evicting him earlier than he would have liked, and he wasn’t born until the following morning. We were beyond grateful that when he arrived, he was stable and able to stay in the L&D room with me for one glorious hour. I was even allowed to try breastfeeding at that point which was a huge win! After an hour, he was taken to the NICU, which is a tear-at-your-heartstrings good-bye for a mother who just gave birth (as you other NICU mamas know). However, I was trying very hard to focus on the positive that for the time being he would at least remain in the same hospital as me.

In the end, Emmett did so well that he was allowed to remain in the NICU at Methodist the whole time until I was ready to be discharged. During this time I was able to breastfeed although we did have to do a bit of supplementation of breastmilk via bottle (there was a partial day when he was sleepy and hardly ate causing his blood sugar to drop, and the NICU doctor wanted to ensure he was getting enough). The plan was to transfer him via Lifeline ambulance the same morning I was discharged, but his transfer was delayed two days in a row for lack of open beds at Riley. Finally after 4 days in the NICU (and one false alarm thinking he was getting transferred only to be told it wasn’t happening that day) Emmett was transferred via ambulance to the heart center at Riley. I can’t begin to describe the emotions we experienced seeing our little 4 day old baby loaded up into the transport isolette with all the gadgets, tools, medical equipment, and 3 person transport team. My postpartum hormones did not make things any easier. Neither did the fact that we were not allowed to ride with him.

By the time we finally made it to the heart center at Riley, it was the weekend. If you’re familiar with hospital settings, they don’t do as many “elective” tests or procedures on the weekends, therefore not much changed with his care compared to the NICU. Until that next Monday, he was simply hooked up to a heart monitor and pulse oximeter that constantly monitored his heart rate and O2 sats, they kept an eye on his weight, and just observed him. (The biggest change for us was that Emmett now had a private room and so Taylor and I were able to stay in there and be with him 24/7). Some of the staff over the weekend indicated that there was a chance Emmett may be discharged prior to his first surgery, but that we would need to wait for the echocardiogram results. When Monday finally rolled around, Emmett had the echo, and the cardiology fellow who came to speak with us about the results dropped the bomb that based on what they saw, Emmett was scheduled for surgery the very next day. We were shocked at how little time we had to mentally prepare (less than 24 hours), especially after getting our hopes up that we might be able to take him home prior to his first surgery. This surgery was to place a PA band, which is a band around his pulmonary artery to help reduce the excess blood flow going to his lungs, which over time can cause hypertension and damage his lungs.

Let me tell you, handing my week old baby off to a surgical team was the hardest thing I have ever done. I was a mess, an absolute mess. He looked so tiny and helpless as they wheeled him back, and all I could do was pray with every fiber of my being. In the family waiting room, a nurse came by every hour to give us updates on the surgery’s progress. Thankfully the wait was shorter than what we anticipated, and about 3 hours later we were told to head up to the CVICU because he was out of surgery and upstairs already. I had tried to mentally prepare for the sight of him as best I could be, having researched and followed other heart moms on social media. However, nothing fully prepares you to see your baby lying there paralyzed, with tubes and wires coming out of him. At this point, Emmett was sedated and on a ventilator, with a chest tube, catheter, feeding tube, 5 IV sites including a femoral line and an arterial line, and of course the incision site. Prior to going through this myself, I always imagined that the actual surgery was the scariest part, and once you make it out of surgery it’s just a matter of healing. Little did I know there is so much more to recovery than resting and waiting. There were lots of bumps and setbacks on the road (which is pretty typical with this type of surgery). Emmett had various ultrasounds done, chest x-rays to check for fluid on his lungs, repeat echos, an infection scare, a rocky extubation, and more blood work than I could count. The constant beeping and alarms going off triggered by Emmett’s heart rate, respiration, or oxygen saturation levels going out of range still cause my own heart rate to quicken. The extubation process was also particularly traumatizing; when they took him off the ventilator, he did not start breathing on his own and as the doctor was holding him up he looked gray, limp, and lifeless. Panic started to set in, and we eventually had to step out of the room as they worked to get him to start breathing (which eventually happened after he received a shot of narcan to counteract the morphine still in his system). Permanently seared into my brain is the memory of his little body after extubation, puffy with swelling, his eyes looked to be swollen shut, and as I went over to his side and started talking to him, his little face turned towards my voice. In that moment I thought my heart would break into a million pieces. It still brings tears to my eyes thinking about that, and how helpless I felt in that moment.

After a few bumpy days, Emmett finally started making progress and he was transferred out of the CVICU to the step down unit. Unfortunately, it was around that time that his O2 sats started dropping. He ended up being put back on oxygen, but even with his oxygen support getting turned up higher and higher, his sats did not improve and in fact continued to worsen. The only positive was that Emmett still looked comfortable, he did not appear to be in distress, wasn’t breathing harder or turning blue. However the numbers began to dip down into frightening ranges. The average heart-healthy individual’s oxygen saturation levels are high 90’s. With Emmett’s physiology, they want his sats to ideally be between 75-85. Much higher and his lungs are getting too much blood flow; much lower and he doesn’t get enough oxygen. During those scary several days, his sats were sitting in the 60’s with dips as low as the 40’s. It was obvious from the nurses’ reactions that those numbers were very concerning, and although the doctors tried various things to increase his sats, the numbers did not improve. Emmett was transferred in the middle of the night back to the CVICU due to prolonged periods of de-saturation. Eventually, a repeat echo showed that below his PA band, there was further narrowing at the pulmonary artery as well as the muscle underneath, in the right ventricle. This seemed to surprise the doctors, who said that they typically do not see this type of rapid constriction/narrowing in such a short amount of time. Unfortunately, what this meant was that Emmett would require another surgery, this time to place a shunt, which connects a section of the aorta to the pulmonary artery with the purpose of increasing his oxygen sats to the desired levels. For a few anxiety-filled days leading up to the surgery, there was talk of having to intubate him again to try to keep his sats from staying in dangerous territory. Thankfully with a combination of medications and stopping his feeds (he was on a feeding tube at this point), they were able to keep him off the ventilator until he was able to get back into the OR.

Learning that we would have to send Emmett off to surgery for the second time in less than 2 weeks was heartbreaking and incredibly frustrating. As parents it left us wondering whether that first surgery was rushed, if we could have or should have pushed to delay it in which case perhaps only one surgery would have been required. Of course with some time and perspective, I recognize now that of course we were not the ones dictating treatment and we simply followed the medical experts recommendations. But at the time those feelings were swirling around along with the anxiety and fear of another surgery.

Perhaps because we just went through the first one, but the second surgery seemed somewhat easier to weather for me emotionally. Emmett’s recovery also went quicker and with less bumps this time. He was transferred out of the CVICU to the step down unit in 2 days which felt extremely fast! We were there for an additional week and a half, most of which was spent waiting for Emmett to gain weight. Heart babies typically struggle with weight gain, as their hearts have to work extra hard which can cause feeding difficulties. The doctors wanted to see about 3 days of steady weight gain before letting him go home. After his second surgery he was initially on a feeding tube of course, and then was able to start off breastfeeding with 2 additional bottles of fortified breastmilk a day. Fortified breastmilk is when they add a bit of formula to the breastmilk to increase calories for babies who need help gaining weight. Despite the fortification, Emmett kept losing weight so each day they had to increase either the amount of breastmilk offered, the amount of fortification, and the number of bottles per day to find the right balance. By the time he was discharged, we were at 6 bottles and only 2 breastfeeding sessions per day. This was definitely a disappointment as I had such a great breastfeeding journey with our other two kids, and hoped to be as close to exclusively breastfeeding as possible with Emmett. Of course I know that the important thing is that Emmett is gaining weight and that he was cleared for discharge. Nevertheless, giving up that dream is something I’ve had to grieve and come to terms with. I think it’s particularly hard because it is one of the few things that I can theoretically control.

In the end, we spent more than 31 days in the hospital before Emmett was discharged and we were able to take him home. Which means we spent an entire month away from our other two boys, who were being cared for by my parents and in-laws. As we walked out of the hospital, I tried very hard to push aside the thought that we will be back in a few short months for the next surgery. (With Emmett’s condition, he will require at least 2 more surgeries, one around 6-8 months of age and another around 2-3 years old. Even then, these surgeries are not a cure, and his heart will never be “fixed” to be like yours or mine.) Being in the hospital is like being in a time warp– you lose track of what day or even month it is, and it has a very “groundhog day” feel to it. The schedule is monotonous, the same rounds with the team each morning, various tests, waiting for results, waiting for next steps. The worry and stress take a physical toll on the body; you can actually feel the cortisol pumping through your veins and are on high alert, constantly waiting for the next bomb to drop. It’s one of those experiences that you can never fully understand unless you go through it personally, and that makes it feel incredibly isolating. You find yourself shielding most people from the severity of what is happening, because it feels too depressing to have only bad news to share, too fruitless to go into the complexities of what is happening. So this is my attempt not only at processing the events of the longest month of my life, but also being transparent about what we experienced. I also found it very helpful after learning about Emmett’s diagnosis prenatally to read about other heart babies and what they have gone through in an attempt to prepare myself for the journey. My hope is that hearing about our experience provides those a few steps behind us with knowledge as well as encouragement. Because despite the hardships that Emmett has gone through (and unfortunately has yet to face), he is the strongest, sweetest little babe and I am so proud to be his mother.