At 2 am Thursday morning we got the call we've been fearing all along. The neonatologist said Isaac was having another episode of arrhythmias and they had a really hard time getting them to stop and then stabilizing him afterwards. He was on max oxygen and vent settings and beyond that, there was nothing they could do medically for him. We needed to come in to see him right away, he might not last much longer. So I called my mom and she and my sister came over. Jen drove with us over there as a huge thunderstorm approached. I prayed to God to not take my baby. He already has Angie, he couldn't possibly need Isaac too.
When we got there he was stable again but we could tell he had a rough night. His CO2 level was still high and his saturation levels were low. He looked pale and sick and not like the baby we knew just a week ago. We asked about ECMO but they said it wasn't an option for him. Typically CDH babies have high pulmonary hypertension but Isaac never really had too much hypertension. When his heart was working right, he did really well. ECMO is for babies with high pulmonary hypertension because it gives the heart time to rest. Isaac's arrhythmia problem would not be solved if he went on ECMO, it would only delay the problem and there are many possible disastrous side effects like brain bleeds because they have to thin the blood so much.
So we sat with him and he squeezed my finger and listened to the thunder while we waited for our Dr. Lawrence to arrive. His color started to come back and he stabilized more but we knew it was only time before he had another episode and he didn't have much reserve left. Dr. Lawrence arrived and said what we had all been thinking, that it might be time to let him go. Of course they would keep doing everything they could for as long as we wanted, but it was up to us. We sat with him for a long time and decided we didn't want him to have more arrhythmias and die that way. It wouldn't be fair to him. They had tried every medicine they could to help his heart, and some of them did, but not for long. I really wanted to hold him, since we were not allowed ever since he was born. We had him baptized by the hospital chaplain and decided it was time to let him go.
They unhooked him from as much as they could and switched him to a regular ventilator. We sat and held him for a long time. It was nice to see him not jiggling from the oscillator and he held tightly to my finger. We sang to him and told him it was ok to go. I never got to see his eyes open fully or see him unsedated. He was gone too fast from this world but he's no longer suffering. It was the first and last time I got to hold him. We had a short service with the chaplain at his bed and we will have him cremated.
It's all too much to handle. If we had known of his heart problems, which could not be seen on the many ultrasounds I had, I would have chosen just to hold him and love him after he was born instead of hooking him up to all those machines. Babies with CDH only have a 50% chance at survival, add to that a heart problem and the chances are much worse. We gave him the best chance we could. I don't have a lot of happy memories of him, partly because he was here such a short time, but mostly because he was always hooked up to machines. I loved holding his hand and feeling him squeeze it and touching his feet and feeling him push back. Those first few days when he was doing well and would open his eyes just a little and look around were amazing also.
We're so thankful for all our doctors who watched us as he grew in me, who had us sent to the best hospital for him, who worked literally around the clock to keep him stable and comfortable when he was born. They are amazing people. I especially want to thank nurse Jessica who was with Isaac the most. During one of his arrhythmia episodes, she rushed to get him the right medicine and her hands started to shake as she attached it to his IV. She apologized for shaking, and said she just really hoped it worked. It did, and it made me know how much she cared for him. One time the pharmacy calculated one of his meds wrong and she caught it. When he was gone, she cried with us. When we packed up to leave, I gave her a hug and whispered her a question, did we do the right thing? She said yes, and at the right time. Thank you, Jessica.
We never told Nathan about Isaac, and I'm thankful for that, even though I know he senses something has been wrong this past week. We will tell him about his little brother when we are all ready some day.
I am left now with a body that doesn't know my baby is gone and I have to gradually stop pumping and it hurts physically and emotionally. It takes six weeks for your uterus to return to its normal size. And most women, me included, still look six months pregnant for a while after baby is born. That's fine when you can stay at home with baby or go out and carry him around with you. But you don't have that option if your baby is in the NICU or did not survive. This is reason 5,324 why you should never ask a woman if she's pregnant.
Thank you all for reading our blog. I'm not sure if I'll continue to post. I hope I helped spread awareness of this awful condition that affects so many families. It was really hard for me when I would search for CDH blogs and the baby did not make it. If you are a mom who just got a CDH diagnosis, you should know that I have no regrets. It is incredibly hard to watch your child suffer and to force them to be strong, but sometimes it pays off and they survive and thrive. The hardest part of this for me was the not knowing, even up to the very last day, we didn't know if he would survive or not. I encourage you to get genetic testing done and get as much information as you can and to participate in the DHREAMS study or another study. Know all your options, find a good support group, and take care of yourself. The more awareness we create, the more funding for research to save these babies.
Some people have asked if there is somewhere they can donate in his memory:
- Breath of Hope has always been an inspiration to me since we got the diagnosis. They sent us a package and send one to all families of CDH babies. Elizabeth has emailed back and forth with me for months now and has been an amazing resource, confidant, and friend.
- Socks for Surgery always accepts donations of infant socks
- Ronald McDonald House provides a place to stay close to the hospital when your child is sick
- Donate Blood in Isaac's name. Preemies often need blood.
- Be nice to someone today, even if they are grumpy or annoy you, you don't know what they've been through.