TeamTex- Our HLHS Story

Last year for my birthday my OBGYN agreed to let me have our 20 week sonogram a week early so we could find out the gender! What a great birthday present! Though, honestly, I knew the whole time that it was a boy. I remember seeing "pregnant" on that pee-stick and thinking "here's my boy".
During the scan the tech commented that he was kind of laying funny and that his spine was casting a shadow on his heart so she couldn't see everything she needed to see. We didn't think much of it but she made a note to check it again at our next scan. His heart rate was great and everything else looked good so we thought we had nothing to worry about. We went home and prepared for our gender reveal birthday dinner with my family.

April 7th, 2017. We had a late afternoon sonogram appointment. It was the start of our wedding anniversary weekend. The sonogram technician did her thing, still mentioning that she couldn't quite see what she needed to see in the heart area but that his heartbeat was strong and everything else looked great. By the time we were done with the sonogram and back in the waiting room to see the doctor it was getting late and we still needed to pick up Lydia so we would have time to get her changed for swim class. I sent Derek to get her since the "good part" part of the appointment was done. The nurse called me back and soon the doctor was in the room.

All happiness that I had from what I thought was a great sonogram drained from my body as he described what they had seen. I don't even remember what he said, I just remember that it felt like sirens were going off in my brain. I was doing my best to stay calm and to think of coherent questions that I should be asking. The only thing I remember asking was, "what are his chances of survival?", to which he replied "I'm sure they're better now" referring to today versus 40 years ago when these surgeries were first being pioneered.

My doctor gave me instructions to call the same specialist we had seen during my pregnancy with Lydia and make an appointment for as soon as possible. The specialist would be able to confirm the diagnosis and then give us our nest steps. As I walked out of the hospital I texted my  teammates that I would be out on Monday because there was something found in our sonogram. I knew there would be no way I would be mentally capable of teaching while I was waiting to see the specialist.

I kept it together until I got to my car. Then... I lost it. I sat there staring at the clock, bawling my eyes out. What was I supposed to do? Go home and tell Derek? Suck it up, get ready for swim class and pretend nothing was wrong? Derek had plans to go out and play poker with some of his friends that night. I didn't want him to miss that, and I also didn't want to drop this bomb on him right before he left and then he wouldn't have a good game (and he'd probably lose money!). I decided to keep quiet. I rushed home, got ready for swim class and we had our normal Friday night.

Saturday morning I woke early (mostly because I didn't really sleep in the first place). I went downstairs where Derek was sleeping on the couch because he didn't want to wake me when he got home from poker. He woke up and I told him we needed to talk about something before the kids woke up. All I could manage to squeak out after that was, "his heart is not okay". We tried to celebrate our wedding anniversary but any conversations we had when the kids weren't around that weekend was focused on our new diagnosis. I remember telling Derek that I did not want to google it, that I didn't want to read horror stories before we saw the specialist. After all, it wouldn't be confirmed until then and I didn't see the need to freak out over something that wasn't 100%. Monday came and I called as soon as they opened. We got an appointment for 2pm.

April 10th, 2017; on our two year wedding anniversary it was confirmed. Our son had Hypoplastic Left Heart Syndrome.  We were instructed to schedule a fetal echocardiogram with a pediatric cardiologist here in Austin and he would be able to assist us with deciding upon where to deliver and seek cardiac treatment. The surgeries that are required are not performed here in Austin. We could go to Dallas or Houston.

After a month of fighting with my insurance company we finally for the 'okay' to go to Texas Children's Hospital in Houston. At the time, TCH was the #2 hospital in the nation for pediatric cardiology and pediatric cardiac surgery. That right there was our deciding factor. We had no idea what our future held, but we wanted to know that we did everything possible to give our little guy the best shot possible. On May 24th we took a visit to the hospital to have a tour and meet our delivering doctor. We then went back to Houston a week later to attend a class for parents of hospitalized newborns- sort of a 'what to expect' thing. It was after those two visits that Derek and I both felt comfortable and confident in our decision and we began preparing for my temporary relocation to Houston.

Since I required a cesarean section delivery due to other complications we chose to schedule it so that we could pick his birthday. Though my due date was 7/6 and I really wanted to schedule my c-section for 7/7/17 (what a lucky birthday, right!?) my new doctor was weary about letting me stay pregnant that long. He warned that if I went into labor on my own we would be risking getting into an emergency c-section situation and we didn't want that! The July 4th holiday made things a bit tricky for us but we finally decided on June 29th as our day.
(^by the way, I wouldn't have made it to 7/7/17. When we checked in on 6/29 I was already in early labor)

Thomas Xander Nerenberg was born at 2:18pm on June 29th, 2017. I was warned that when he came out he may be blueish or purple- he was a healthy pink! I was warned that when he came out he'd have to be hooked up to IV's right away and that I wouldn't get to hold him- he was so strong that I DID get to hold him, and kiss him, and tell him that I loved him before he was whisked away to the Cardiovascular Intensive Care Unit (CVICU).

It was 12 hours before I saw him again. I was taken to my recovery room and was told that I could not go to the CVICU until I could stand on my own and walk around a bit, Well, if that isn't motivation I don't know what is! Four days later I was released from the hospital and we checked into the Ronald McDonald House. We were only a mile away from the hospital that night but I hated it. I hated being so far from him. I couldn't sleep, I was in so much pain both from my c-section recovery and from pumping every 3 hours. My hormones were crashing, I had no idea what my baby's future looked like, and I was utterly helpless in every way.

My mom, older sister, and younger sister came to Houston for Thomas' birth and they helped to take care of Lydia until he was 1 week post-op. Lydia was only 14 months old and was not allowed to visit Thomas just yet and I really didn't want her at the RMH. They all stayed in the townhouse that my brother-in-law's mother owned but wasn't using. Derek and I stayed at the Ronald McDonald House until my mom had to leave and go back to work, then we stayed at the townhouse again. I found a summer camp at a church near the hospital that Lydia could go to during the day so I could spend my days at the hospital. Derek worked remotely from either the townhouse or the hospital and spent his evenings with Thomas.

Thomas had his Norwood surgery at 6 days old and spent about 3 weeks in the CVICU after that. We were moved down to the "step-down" unit after that where we began learning his medicine schedule and everything else that we would need to know to take him "home" (Houston-home) until his next surgery. We were discharged August 14th, 2017 after spending 47 days in the hospital. We maintained cardiology appointments every Wednesday between discharge and our next surgery on October 25th, 2017. Glenn recovery is so much different than Norwood recovery! We only spent 10 days inpatient after the Glenn and were given the okay to take him home to Austin a week and a half later!

I will write a more in-depth recap of our Norwood and Glenn experience another day.

Honestly, I am not sure what we would have done without so much support from our family and friends. I thank God daily for their generosity and flexibility. A hospital stay like ours comes with so many unknowns. No one can tell you exactly what is going to happen after surgery. No one can predict when of if you will leave the hospital in between surgeries! We feel extremely blessed that our hospital stay was as short as it was! Faith, prayer, family, friends, and consistent communication was what kept Derek and me going.

This experience... it's hard. It's so hard. It's harder than I ever let on to anyone. There were okay days, there were bad days, and there were really bad days. But we kept going... because what else can you do?