One thing I’ve heard before but never really understood, or could even begin to understand, was the saying “the NICU life changes you.” Before you had kids you, could understand how a Mom would go to the ends of the Earth for her child. Before you had kids, you could understand why parents liked taking trips that made their kids smile instead of taking a trip to Vegas. Before kids, you could understand why parents would change their entire lives just to make their kids happy. You can understand all of that, but you could never understand the deep, soul penetrating love that a parent has for their child until you’ve been there. It’s like a secret passageway in your heart you never knew you had until you held your child for the first time, then it was like the flood gates were wide open! At that moment, you made a promise to yourself and to that little baby that you would do anything to protect them and keep them safe. They are now the most important thing in this world. Some parents get to experience this right away. They get to start that bond with their baby almost immediately. Some parents don’t. Some parents have to look at their baby from the outside of a plastic box before ever touching them.
The day after Audrey was born was the worst day of my life.
The day after Audrey was born was like a nightmare I couldn’t wake up from. Audrey was diagnosed with Pulmonary Hypertension (high blood pressure in the heart) secondary to Pulmonary Hypoplasia (underdeveloped lungs). Those were the two worst diagnoses the MFM warned us about. When we heard the NICU doctor say her diagnosis out loud, it completely broke me. I felt like I failed her as a parent for putting her through what would inevitably be a short, agonizing life. I felt guilty for being so selfish and continuing the pregnancy because I wasn’t ready to let go at 14 weeks. I felt guilty for putting my husband through the same heartbreak I was feeling. Even though we made this decision together, I felt guilty that my body couldn’t have a normal pregnancy and that all this happened because I couldn’t do what women were made to do. The NICU doctor (who we ended up calling “Dr. Doom” because she had the unfortunate task of telling us exactly what was going on) told us that Audrey’s condition is very serious and that they are working to find other alternatives if they exhaust all options they have available at this hospital. We are very fortunate to live in an area with a lot of technologically advanced hospitals so at this point we had a few different options. The doctor explained that days 3-5 are the worst for babies with Audrey’s conditions. She said they either start to show signs of improvement or go downhill pretty quickly. She explained that if things do start to go downhill they need to start her on something called ECMO right away. ECMO is a machine that will oxygenate the blood and pump it back into the body without the use of the lungs. The problem with ECMO is that the baby has to be a certain size and Audrey was right on the edge of the cutoff.
I wanted to stay longer with Audrey after that conversation, but I couldn’t pull myself together for even five minutes. I had to go back to my room until I could get it together to go back (our NICU was open 24/7 for parents). We just sat on the bed and cried. After a little while my husband thought I should eat something (it was well past dinnertime at the hospital and I hadn’t been keeping much down since my surgery) so he went to go get us something to eat. That was the first time I’d been truly alone since I had her. No visitors, no nurses, no doctors, no lactation specialists, no birth certificate processors, no social workers…. no one! I think because I had seen so many people in the last 24 hours I was mentally exhausted and let’s not forget the prognosis we’d just received.
As I laid alone in my bed, in the pitch dark, I lost it. I was so overcome with emotion I couldn’t even stop myself from letting it all out. I cried so hard I couldn’t catch my breath. I was crying so hard I thought for sure I ripped out several of my stitches. Soon I started shaking uncontrollably all over. At that very moment, I wanted to die. I remember praying (which I don’t normally do) and telling God to take me instead. I said if you have to take one of us, let it be me. I said it’s not fair to let her suffer because I was selfish. I said she’s just a baby and doesn’t deserve this. I was finally able to close my eyes and calm down enough to rest until my husband came back.
By day 4 Audrey’s condition was improving slightly, but she wasn’t getting any worse and that’s all we could ask for at this point. 3 of the 4 hospitals that had ECMO declined to take her because of her size. Our last option was out of state and that was risky given her condition. We were just waiting for some more significant improvement. Anything that would tell us she was heading in the right direction. As the week went on, she was slowly making improvements. Her doctors grew more confident that her lungs and heart were going to be ok and that ECMO was no longer needed. Audrey made her biggest strides somewhere between day 5 and day 14. On day 7 she was taken off the oscillator machine that was vibrating her body so that her lungs didn’t have to work so hard exchanging the gases out her lungs. Somewhere between day 7 and day 9, she was extubated (breathing without a tube).
On day 10, we finally got to hold her for the first time.
Being able to hold her was a huge victory. For the last 10 days, we weren’t allowed to touch her, shine too much light into her isolette, listen to our phones too loud, kiss her, hold her hand, nothing. She was to have no stimulation at all because it raised her heart rate and then everything else would go downhill after that. From day 10 all the way to day 27, Audrey made huge improvements everyday and on October 23rd, 2018 we got to bring our beautiful girl home!