Again, if you would like to catch up, you can find the rest of Henry’s Gastroschisis Story here:
Possible Growth Restriction Update
One Month Out
One Week Out
Okay. I’m just going to start from the beginning. Otherwise I will be bouncing all over the place:
Thursday, December 27, 2018. I woke up at 6:00 to have breakfast before work. Sofia joined me. She said that baby was having a dance party so she only really got three hours of sleep. I went off to work and Sofia went back to get some rest. She was able to get a couple hours of sleep in.
Meanwhile, my workday flew by. There were a lot of people off so there was plenty to do. I clocked out at noon as planned and returned to the Ronald McDonald House. Our last ultrasound wasn’t until two, so we went to the IHOP across the street from Children’s. We had a good time–and didn’t really suspect anything.
We went to our last Ultrasound at two. The sonographer came in and joked with us. She knew we were looking for a reason to deliver before the new year. But, as she started moving through the routine, she got quiet. His intestine had gotten even bigger. And, more importantly, he wasn’t moving and was not practice breathing. During all of our other ultrasounds at Children’s he moved and breathed constantly.
They attached Sofia to a fetal heart monitor. That’s when everything started. The heart rate was elevated. We’ve gone to probably 20 non-stress tests over the course of the pregnancy, so we are used to the process and the numbers. His heart rate usually hung out in the 140s and would jump to the 160s when he was moving. But now he was straddling 175…and the number wasn’t moving more than a few in either direction for anything.
The sonographer went to get our Nurse Practitioner (she is pretty much our favorite person here). On her way out, she said, “I think your baby may be picking his birthday.” As Sofia and I waited in the room, the reality set in. This wasn’t good. When the Nurse Practitioner came in, she confirmed that the numbers weren’t great. She put on a brave face for us, which I appreciated. She told us to make our phone calls as they prepared the admission.
When they left, the tears started. There was plenty of that over the course of the afternoon and evening. Sofia called her parents and I called my parents. Probably one of the hardest calls I had to make. I let them know that an induction would likely be started in the next couple hours so they could make preparations to come down here. The plan was to have them at the hospital at the time of the birth so that someone could be with Sofia as I followed baby to the NICU.
They put us in Sofia’s delivery room at around 3:00. We met our nurses and then we met with the anesthesiologist. The anesthesiologist went over the plan. That was when my worry level escalated. She only went over a Cesarean plan before leaving. She said she would go over a new plan if anything changed. I tried to hide my worry from Sofia, but we both were starting to hold our breath.
The OB came into the room about 3:30. She told us that there may have been some confusion regarding the delivery plan. She talked to us about the results of the ultrasound and non-stress test and made it pretty plain–this baby needs to come as fast as possible. She technically gave us the option of a vaginal delivery, but stressed that it could be dangerous for him to stay in there and deal with the contractions. As she talked, the baby’s heart rate moved slowly up to 180. By the time we were done talking, we had only one question left: How quickly would this happen?
I had no idea. As they prepped the OR, they ran a bunch of labs on Sofia. As they asked her a bunch of questions, I put a gown over my clothing and made a bunch of phone calls. I told my parents that this was going to happen immediately–getting them to hit the road as quickly as possible. I got my best friend–Alan–to spend the night at our house in Greeley so our furry friends wouldn’t be alone overnight. I called work and told them I would be out for a couple weeks. I didn’t really even have time to breathe. Or worry. I was just rolling with the escalating situation.
At 3:47, they rolled Sofia into the OR. I wasn’t allowed to join her until they got the spinal block in. I said goodbye to Sofia and went over to the family waiting room. They told me they would come to get me in 10-15 minutes. And that is where fear overtook me. I became far too aware of everything we knew about Gastroschisis. There’s a reason they monitor these babies so much in the final weeks. The chance for stillbirth of increases with every passing week. What was supposed to just another ultrasound turned into our worst nightmare.
I was coming to terms with the possibility that he may not make it.
Ten minutes passed. Then fifteen. Then twenty. Then twenty-five. My mind shifted to my wife. I didn’t kiss her before saying goodbye. What if something was going wrong. Far too much time had passed. I started pacing alone in the room. After nearly half an hour, the woman approached me and introduces herself as the head of the maternal fetal care unit. My heart sinks. She tells me that they tried the spinal block on my wife four times and still could not get it. She became nauseous and they had to abandon the plan of a spinal block. Instead, they switched her over to general anesthesia.
That means two things. First, she would be asleep throughout the procedure. Secondly, since Sofia didn’t need support through the procedure, there was no medical reason to allow me into the room. She looked worried about telling me this, but I knew this was a possibility. All I could do was wait. She wasn’t able to tell me much of anything else. I called my parents to let them know and see how close they were. They had just turned onto I-70. They were twenty minutes out.
Henry Thomas Reilly was born at 4:18 in the OR as I paced in the family room just outside. At about 4:30–some 43 minutes alone in the family room–Sofia’s nurse appears and tells me to follow her. We quickly walk back through the OR. We pass by a door with a window on it. I see five people working on a woman. There’s a lot of blood. When we go in the next door, I realize that woman is my wife. The two “rooms” are separated by curtains. There are eight people on my side of the room surrounding a tiny bed. Everyone is in full-body suits with RN, MD, or CNA posted on their chest. Several of them turn to me as I enter the room. They smile and congratulate me as they bring me to my son’s bedside for the first time. They ask me for a name. I tell them, but let them know my wife still has override power when she wakes up.
He is so small. He is barely moving. He has a full head of black hair. His eyes are still closed. There is a plastic bag covering him from the mid-torso down. It is a clear bag. Inside are his small intestines, large intestines, stomach, and bladder. It’s hard not to focus on the large intestines. I know they were dilating above what they wanted, but I never truly understood what a 3cm dilated intestines would look like.
As the RNs work on my son, the doctor starts talking to me. He pooped. In utero. That’s how all of this started. One in five babies poop in utero. The biggest issue with it is that there is suddenly poop in the amniotic fluid. And babies swallow and breathe in amniotic fluid. So baby probably pooped sometime between midnight and noon. But that is why we had twice a week appointments. They caught this issue before Sofia even realized that his movement was decreasing.
As we talk, one of the RNs moving a suction tube down his nose and continues for several inches. He doesn’t react to this, which terrifies me. Suddenly, it makes a loud sucking sound and a large amount of dark substance come out. She goes further down and sucks out even more. Then, for the first time, he crinkles his forehead and starts to cry. To go from accepting that he might not make it to him crying was one of the biggest leaps.
As another RN tries to get the tiniest needle in his tiny hand, I ask about an Apgar Test. They said they didn’t really run one, but if they did he would score and 8 or a 9. And, with a rush, I know he’s going to be okay. We still have to deal with the Gastroschisis, but that’s okay. That’s why we are at Children’s. They know how to deal even with severe cases of Gastroschisis. He’s going to be fine.
As I stand around and try to take it all in, my mind turns to my wife. There is a rag on the floor next to me. It is covered in blood. Even though it is only there for a second before one of the teammates grabs it and makes it disappear, I can’t help but worry. She’s been in surgery for awhile and they haven’t told me what’s going on. I ask them a couple times how she is doing but they are not able to give me much other than saying that she is in surgery and doing okay.
After ten minutes of two RNs failing to get the needle in the tiny vein, the MD calls it off and tells everyone to prep for transport. They have a NICU room ready and they can do all of this in that room. I turn to her and ask if I join them. She says yes since I cannot stay with my wife. They spend a few minutes unhooking everything from the wall and making the heating bed transferable. Then, we are off. I cannot help but steal a few looks at my wife as we leave the room. They are still working on her. And there really is a lot of blood.
I will never forget that one minute walk from the OR to the NICU. I stood next to the heating bed. Around me, I am flanked by the same eight doctors and nurses who have been with my son since his birth. This is why we are at Children’s. This is one of the best places in the country we could be for this very situation. In the height of the moment, there was no place left for active emotions–just moving in step with Henry–just minutes old.
They wheeled him into the room where I now sit and type. This is the room he will be for the next several weeks. But, as we wheeled Henry into place, I was on the sidelines as the professionals took over. His heart rate was still climbing–nearing 190. As they worked on getting the IV in through his tiny hands, I called my parents to let them know I was in the NICU. They arrived about five minutes later. I nearly broke down when they came–having been without my wife or other support during the most stressful hour of my life.
As my parents settled in, I finally got word that Sofia was out of surgery. I left my parents to watch over him and told them to let me know when his surgeon arrived. A nurse took me back to the delivery room where my wife would be staying. And there she was. Mostly unconscious, but she was out of surgery and everyone was telling me she was doing fine. The relief that came in that moment was intense–knowing that the two most important people in my life were safe after everything they had been through.
I stood by my wife’s bedside as she partially came to. They encouraged her to cough to start getting the anesthesia out of her system. As the medication of the surgery wore off, she started to complain about the pain. They gave her some of the basics as they waited on the morphine drip to arrive. I was only with her fifteen minutes when my mother came in the room. She looked worried. She looked at me and told me I needed to go back to the NICU.
Before I could think, my mother was by my wife’s side and I was fast-walking behind the nurse who brought my mother. I didn’t have the energy to ask what was going on. I knew the worse wasn’t over yet. I just didn’t know what to expect. When I walked into the room, there were two new faces hovering over Henry. The bag that covered his lower half was off and they were examining his intestine inch by inch. I looked up at the monitor and saw his heart rate fluctuating between 200 and 210. They wanted it under 160. His respiratory rate was above 100. They wanted it closer to 50.
The two newcomers told me they were surgeon fellows. The surgeon who would be doing the primary Gastroschisis procedure would be in shortly. In the meantime, they were examining his intestines inch by inch for a hole or a rupture. Our worst nightmare. If they found one, that would mean we would be heading down a very different road to recovery that would likely include a resection of part of the intestines.
I took out my phone and found that Sofia’s family had been trying to reach me for the last half hour. I called Sofia’s father and handed the phone to my dad. They talked as I was introduced to my son’s surgeon. They didn’t find a hole (Thank God). So they started cleaning the intestines, the stomach and the bladder of the meconium that came out in utero. The surgeon took over after everything was clean and started prepping for the surgery. That’s when I realized they would be doing the surgery in this room.
Henry’s heart rate dropped below 200 as they administered morphine to prep him for surgery. My understanding of this surgery was they they would put the bladder and the stomach back in his abdomen through the small hole and put his intestines in a silo bag that would allow for them to go back in slowly over the course of several days so that there wouldn’t be too much pressure on the inside of his small abdomen (it never needed to grow to hold the intestines since his intestines were never inside).
That’s when the surgeon asked my dad and I to leave. I kind of expected that. My dad and I talked as we made our way back to Sofia’s room. When we got there, to my surprise, Sofia was talking with my mom and seemed to coming out of the anesthesia. I tapped out my mom and took over the bedside as they finally started to set up the morphine drip. As the pain relief came, Sofia become more aware, but was obviously exhausted.
It was less than an hour later when the surgeon made his way into our room. I could barely stand when he came in. He said, “We got it all in.” I was relieved because it really did look like a lot to fit all of it into the silo. When I said that, he said, “No. It’s all back in his abdomen.” My parents and I had the same reaction. Shock. How the Hell did he fit that much back inside? But I didn’t have the energy to ask. I just thanked him. He told us that he didn’t close Henry’s hole. He just put some mesh over it and covered it. That means it should heal without a scar if all goes well. That’ll leave him without a belly button and with a flat tummy.
That was around seven o’clock–some five hours after our last ultrasound. It’s been some 48 hours since then. Since then, things have become pretty standard. My parents went home the following afternoon. My best friend came down. Our friends at the Ronald McDonald House came over. Other than that, we’ve fallen into a routine of making our way back and forth between the NICU and the Maternal Fetal Care Unit. I’ve probably walked that hallway thirty times already. And Sofia has graduated from the wheelchair to walking the hallway most of the time. Her recovery from the C-Section is ahead of schedule.
As for Henry, all signs look good. From the resting heart rate of 200 before surgery, we watched it fall into the 140s this evening. It’s been slow and steady. The respiratory rate is falling too–but continues to climb when they pump gunk out of his intestines. He also got a PICC line in today–a procedure I would recommend not being present for.
And now we wait. He continues to get better. He went from morphine in his first few hours to aspirin to no pain meds at all. As the PICC line give him the nutrition he needs is in, we wait for his intestines to heal. Sofia has already started pumping so that we will have milk to give him when his intestines are healed and ready to start the long process to full feedings.
I am ready for the long road ahead. I did not expect such a terrifying entry to this world for our little one.. But we are in a far better place now. This is the part we were ready for–waiting for Henry to recover. Sofia will be discharged as 2018 turns into 2019. After that, our lives will stop being the back and forth in the fourth floor hallway and will start being a back and forth between the hospital and the Ronald McDonald House.
I am convinced that the preparation plan that Children’s Hospital of Colorado provided us and their care upon my son’s arrival saved his life. There is no way to know what would have happened if we weren’t here for that last ultrasound. I will be forever grateful for this place. We are lucky to have such a place here in Colorado.
I will keep you guys updated on the long road to a full recovery.