Maeve Alice Miller was born on July 6, 2009. She was early…34 weeks along in the pregnancy. She weighed 4 lbs. 10 oz. To most people, that age and weight wouldn’t seem “too bad” for a premature baby. But Maeve had a bigger problem to face…she had a congenital diaphragmatic hernia (CDH), meaning her diaphragm had not developed properly, so some of her abdominal contents had been in her chest cavity. Throughout the pregnancy we were of the understanding that Maeve’s stomach was in her chest, pushing her heart to the side and taking up valuable space where her lungs needed to develop. We also understood that she needed as long as she could have in utero for her lungs to develop as much as they could. She could have the diaphragm repaired after she was born, but the lungs were key in determining how well she would do.
After being delivered by an emergency C-section, the staff at Hamot Medical Center worked on stabilizing Maeve. Once we spent an hour in the recovery room for me, they allowed us to go into the NICU to see her. They pushed my entire hospital bed into the NICU since my body was still numb from the surgery. Little Maeve’s head was purple, and no one quite knew why, but the rest of her body looked perfect. Her arms and legs looked so little and skinny. She was intubated and hooked up to IV’s. We were able to touch her legs gently, take a picture or two, and tell her we loved her. After a few hours, she was flown to Pittsburgh Children’s Hospital in a helicopter. Lucky for us, they allowed Jonathan (Daddy) to fly down with her, while I stayed back for my necessary recovery. We thanked God it was a cloudless, moonlit night for their flight.
On the first day at Children’s, Maeve was not able to breathe well on the ventilator, and it was determined that she would need to be put on ECMO (extra-corporeal membrane oxygenation). Basically, because she was not getting enough oxygen with the assistance of the ventilator, her blood would be taken out of her body through a big tube in her neck, oxygenated for her, then put back into her body. Maeve was just “old” enough, and just “big” enough to qualify for this intervention. Although we knew needing ECMO was not a good sign, we thanked God she had been “allowed” to be on it.
The next 16 days went by in a cautiously hopeful yet scary roller coaster ride of watching the “numbers”…heart rate, blood pressure, the oxygen level in her blood, the flow needed on the ECMO machine, the amount of fluid given versus the amount Maeve eliminated through urine…all to help determine the “right” day for Maeve to have her diaphragm repaired. Some days looked better than others, but none of them seemed like the “right” day for surgery. She was not strong enough to come off the ECMO machine, and fluid was building up in her body.
On day 18 of her life, the surgeons decided it was now or never to repair the diaphragmatic hernia. We were happy to have a decision made, and glad to have her stomach moved back into place to allow her lungs to expand more…but we were terrified. Maeve seemed to handle the surgery well, but they discovered more than just stomach had herniated to her chest cavity. The surgeons found that small bowel, spleen, some of her liver, and some large intestine were also herniated into the chest. We knew that wasn’t a good sign either, but were hopeful that things would improve now that everything was in the right place. Maeve was taken off ECMO a few hours after surgery, and put on a ventilator. It was time to see what the lungs could handle.
By the next day she had been moved from the ventilator to the oscillator, another machine that assists with breathing, because she was not getting enough oxygen from the ventilator. More fluid was building up in her body, and that included her lungs. It was an up and down day, of waiting and watching to see how Maeve would respond to the changes since surgery. It was difficult to say how thing would go. That night Jonathan asked if I thought Maeve would make it. I responded “I have hope because she’s a baby, and all babies know to do is fight to be alive. If this were happening to an adult, then my answer would be ‘no’”.
The next morning, Jonathan called from the hospital to say “Come right away. Her heart rate is slowing. It doesn’t look like she’s going to make it.” The minute I saw her I knew…this was it. It was too much for her. She couldn’t take anymore. Maeve’s body was so full of fluid she looked like she would burst. She had turned a reddish/purple color, possibly due to all the blood products she received so quickly after surgery. She did not look like the baby born 20 days earlier.
The doctors asked us if we wanted to try anything else…like putting a tube in her chest to try to drain some fluid…but we all knew that was not going to solve our problem. And in the end, Maeve’s body couldn’t take another procedure. We didn’t want to do anything TO her anymore. Her heart rate was slowing, and as a physician noted, “she was deciding for us”. We had the staff remove her IV’s, and then her breathing tube. They wrapped her up and handed her to us…the first time we were able to hold her…while she died.
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