Charlie's First Week

Our Charlie boy was born February 6. 2025 at 8 am. It’s funny because Zach had been hoping for February 5^th because he thought 2/5/25 had a good ring, but Charlie had other plans. He was 4 weeks early, but still weighed in at 6 pounds 5 ounces and was 18 inches long. He had a head full of dark hair, just like they thought in all his ultrasounds. He was immediately intubated and sedated because of his CDH. He was initially started on a conventional ventilator but was soon switched to an oscillator because of his labs. The oscillator is a type of ventilator that gives low volumes of air and pressures at a high rate. It looked like he was vibrating because of how many breaths he was getting. His vitals and labs improved after the switch, and he was able to be weaned on the settings. He was also having low blood pressure so was started on medication to help with that. Unfortunately, he started to have some fits of grumpiness and was having some abnormal movements. So they started an EEG. This looked at his brain activity for the next day and a half to rule out any seizures. Luckily, he wasn’t having seizures, but the EEG stickers left SO much glue in his beautiful hair. I was able to make it to his bedside after a couple hours post-birth. It was hard to take everything in right after delivery and my hormones being all over the place, so I started taking notes on everything happening (which is how I’m able to write all of this).

The next day they did an echocardiogram to look at Charlie’s heart. They were concerned for coarctation of the aorta, which is when one of the major vessels (the aorta) is narrower than it should be. They told us his pulses were good and it should plump up after his CDH repair, so they weren’t concerned. They placed a PICC line and he continued to need medications for his low blood pressures. His blood gases were looking worse because he was having so much agitation, so they had to increase his sedation. It was so hard seeing our baby struggle with everything. He was having a hard time handling the oscillator because it felt so unnatural to him. He also couldn’t be held so there was no way for me to comfort him. That was, and sometimes still is, the hardest part. Charlie cried and I felt so helpless because all the things a mother can do for comfort, I couldn’t do.

Saturday, I discharged from labor and delivery. I was definitely very sore, but I was walking constantly. The nurses kept asking if they could get me water, but I would go get it myself. Being a nurse myself makes for the worst patients. There were times Zach had to go home to let our dog out and feed her, and I would walk to the NICU to see Charlie by myself. There was no way I was staying in bed, so I only used a wheelchair on my first visit with Charlie. My feet were more swollen than they ever were during pregnancy, and I had to sit just right to be comfortable, but I pushed through. And let me just say, perineal ice packs are the best invention post-partum (iykyk).

That same day, Charlie opened his eyes! It was incredible. Previously our boy had only been grumpy or sleeping, but this was the first time he looked like a normal awake baby. We also got to be apart of our first diaper change. With his intestines being up in his chest, everything moved very slowly so he wasn’t pooping much at all. It took him several weeks to get all the meconium out. It wasn’t much, but we were getting to see some of the normal baby things.

On Sunday, Charlie’s weight went up but not in a good way. He was holding onto too much fluid, so he was started on Lasix (diuretic). He was also able to get off his blood pressure medication! But on the other hand, his blood pressure was high because he was so agitated, especially at night. When he got mad, it made his respiratory labs (arterial blood gases) look bad so they were trying to get his sedation under control. But on a positive note, the nurses were able to get most of the glue out of his hair, and it was so fuzzy! Charlie’s hair was definitely one of his best features. That day was also the Chief’s Superbowl. We didn’t win, but Charlie sported a Chiefs hat and bib from his Papa. Everything was too big for him and we had to be really careful with any touching and moving, so they just laid on top of him for pictures. And lastly (probably Charlie’s favorite), he got his first taste of breastmilk. On top of everything going on, I was pumping every 3 hours around the clock. At first it wasn’t so bad, but as the days went on it got hard. I’ve told many people that pumping through the night might be harder than breast feeding because I can turn off my alarm to pump but I can’t turn off a crying hungry baby, so missing sessions was easy. Thankfully, I was able to stay on schedule until my milk was fully in and I could sleep more through the night. I just felt grateful that at least something was going okay.

Charlie had one of his best days on Monday. He was stable off his blood pressure drip and his blood gases were the best they had been since he was born! He was still feisty with any touching and moving, but he was doing okay. We were feeling really optimistic, and they started talking about when they would do his CDH repair. Charlie was sucking on his breathing tube and we were able to touch his feet, arms, and head. And boy oh boy did he love his head rubs!

Tuesday, however, took a turn for the worst. He was very restless and had to be started on a second sedative and a paralytic. They repeated his echo and said his heart looked good, but the blood pressure in his lungs was severely high. To help with this they added an inhaled gas (nitric oxide) to his ventilator and started IV milrinone. These two medications were used to help improve his heart function and relax his blood vessels in his lungs to bring down the pressure. During the day, there was one doctor we had never met who kept lingering into his room but didn’t stay or speak to us, and looking back he knew things were going downhill fast. We were told they were going to drain all treatments until we needed to start talking about further life support. Charlie was mostly stable after starting all these treatments, so Zach and I went to the cafeteria for lunch (at least as much as we could eat with all the stress). We saw the fetal surgeon we had met during our consult and talked about how Charlie was doing. She was optimistic and said even if things did go in the wrong direction, CMH had one of the best ECMO programs she had ever seen. ECMO is the highest level of life support. It has two large catheters that pull blood out of the body, oxygenate it and remove the carbon dioxide, and then put it back in the body. In other words, it acts as the heart and the lungs and is the last option for support. Within minutes of ending our conversation, I got a phone call from CMH. I knew something was wrong. I answered the phone and the nurse practitioner said, “we’ve exhausted all our options and we need to put Charlie on ECMO.” My heart dropped.

We basically ran upstairs and into Charlie’s room where they were already setting things up to insert the ECMO cannulas. I already had tears in my eyes, but then I looked at his vital sign monitor and saw that his oxygen was in the 50s and trending down. I started sobbing. Looking back, Zach has said he was in shock. And not being in healthcare he didn’t know how bad it really was, but seeing how distraught I was he knew it wasn’t good. The nurse led us to our chairs to sit and talk to the doctor and sign consent. We sat down and I couldn’t stop watching the area of his warmer, my tears never ending. The doctor who had previously been stalking Charlie’s room came to us and squatted down. I really don’t remember a thing he said besides that we needed to sign consent. Zach has said that the doctor was teary eyed when he had to give us the news. We signed our son’s lives over to the team and had to step out for the procedure. It was one of the hardest moments of his hospital stay.

When the procedure was done, they came and got us from the waiting room. They said he tolerated it very well and was stable. We walked back into his room. I wasn’t sure what I was expecting, but it was actually kind of a relief. I didn’t realize how much he was truly struggling until I saw him no longer struggling. He was still paralyzed, but his vitals looked much better. This is not where I wanted Charlie to be, but he looked at peace. The other perk with ECMO, was that his CDH repair would be within a few days. The downside was there are SO many complications that can happen with ECMO- bleeding (especially in the brain), clots, poor blood flow to the extremities, infection, neurological problems, and like any technology it can fail. The thoughts of something going wrong never left my head until he was off ECMO. He got regular brain ultrasounds, and I held my breath every time until the result was back. If something went wrong, this was Charlie’s last treatment option. Knowing there was nothing further was terrifying. It was never-ending worry.

The day after starting ECMO, he was able to come off the paralytic. It was a slow day, mostly rest and recovery. Throughout all of ECMO, his fluid balance was hard to manage. He either had too much and was swollen or too little and his blood pressure would get too low. It was a constant cycle of adding and taking away fluids and diuretics. I remember multiple times telling Zach, “I want him to be an organ donor”. I was trying so hard to be positive, but it was so hard. I mentally started thinking about our future if Charlie didn’t make it and trying to plan. Thank goodness I didn’t get far into the planning. After Charlie started to move more, he was able to get more breast milk on an oral swab. That was the first time he was sucking on the swab and seemed to want more. It made me feel like my pumping was worth it and that I was doing something right. After everything he had already been through, he still had to get through surgery. And the team decided the next day was the day. He would be one week old.