Told by: Jenn
We named our little girl Evelynn, and we did not expect any complications. It was a high risk pregnancy based on the fact that I had open heart surgery when I was a baby and I was on a medication during the pregnancy, so both the baby and I were monitored very closely. We were told consistently how perfect she was. They did a fetal echocardiogram, and the perinatalogist actually said she could use the pictures in her presentations for how everything should look! Honestly, a heart problem was our biggest fear. Towards the end, I started to develop preeclampsia, so I went on bed rest & they induced when I was 37 weeks, 5 days. I made it to 10 cm, but had developed a fever, & when I would push, the baby’s heart rate would go up & wouldn’t come down to where they wanted it to, & my blood pressure was up, so they decided to do a c-section. Evie was born @ 1:39am on 7/19/11 & had issues breathing right away. They thought it was just an aspiration pneumonia & kept trying to get her stable, but eventually ended up calling the NICU down at St. Joseph’s Hospital in Milwaukee, Wisconsin, about an hour away, and they came up to get her at about 11:30am and left around 2:00pm. I had not seen her because they still had me hooked to the epidural trying to deal with the pain, so they wheeled her in & let me touch her hand & she opened her eyes & looked at me, & then they took her. She stayed stable through the transport down to St. Joe’s (as we call it) and through out the evening & into the night, but early on the morning of the 20th, her vitals started to crash & St. Joe’s called the hospital that I was at & said that they needed to get me down there to be with her because they didn’t think she was going to make it. My ob/gyn (bless her, I swear, she is a saint) was able to pull the strings & get me admitted down there, so my mom & here friend drove me, since my husband was already down there with Evie. Once I got down to St. Joe’s, I was able to spend about 3-4 hrs with her, we had her baptized, & we learned that they wanted to transfer her to Children’s Hospital, which was only 3-4 miles away but it took like 20-30 minutes to get there. But, Children’s had a life support machine called ECMO & they wanted her to have access to it in case she needed it. Her vitals had finally gotten to a point where they could transfer her, the team got there, & all of a sudden the doctor from Children’s sat us down & told me to prepare myself because they didn’t expect her to survive the transport & that this was probably the last time I would see my daughter alive. That was the last thing I expected to hear & at the same time in a weird way it wasn’t… it definitely hit a nerve & shocked me, but I could see something & feel something from the nurses & doctors. But, she did survive the transport, which was a huge accomplishment. I stayed in St. Joe’s & away from her until the 23rd.. the only reason that they let me go from there was because they knew she wasn’t doing well, but my blood pressure wasn’t stable. My poor husband was giving me updates via phone & trying to manage everything by himself (we’ve gotten used to doing everything pretty much as a twosome… we are each other’s support systems)… she had 3 surgeries in 2 days, one was exploratory because they thought something was blocking the food from moving through her digestive system, which wasn’t the case, then her kidneys stopped working, so they put her on dialysis, & then they put her on the ECMO machine, which is full life support. It is heart lung bypass & was doing everything for her. Here’s where things get fuzzy & run together… once I got out of St. Joe’s, I was out & able to spend time with her from Saturday until Monday night. TMonday during the day I had seen my ob/gyn & she had wanted to admit me to do a magnesium drip because my blood pressure wasn’t coming down, but she knew that Evie wasn’t doing well, so she let me go, but made me promise that I would go in if my blood pressure went too high. So, Monday when we got back down to Milwaukee, we had to meet with the geneticist & he basically told us that there was little to no hope & that they were more surely leaning toward a metabolic disorder. A few hours later, my husband made me take my blood pressure & it was 170/117, so he took me to the hospital that is connected to Children’s & they admitted me for preeclampsia. I was there from Monday the 25th until the morning of Wednesday the 27th… The nurse that I had on Tuesday had lost two of her children, one to SIDS & one when he was 18, so she spent a lot of time talking with me & she took me up to see Evie that day. Wednesday when I got out, my husband & I thought we were going to have to make the decision to take her off of support & we were agonizing over that. We knew she was not going to survive & that she was looking worse, she was jaundiced & her vitals weren’t as strong… but how do you say goodbye? Thankfully, our Dr. sat us down & told us that we would not have to make that decision, they would, that they had just gotten some tests back showing that it was a metabolic disorder, but not what specific one, & that they would give her one more night to respond to the treatment. I truly believe that she was giving me more time with Evie, because at this point I had had the least amount of time with her. The next day, July 28th, we finally got to hold her. The hospital had a photographer take pictures of us holding her & of our hands with hers, & our hands holding her foot. They did molds of her hands and feet, and hand and feet prints. They gave us as much time as we needed and wanted with her. My parents got to hold her and say goodbye, my husbands said goodbye. Both my husband & I were amazed how God had answered our prayer from the night before…both of us had prayed for strength and peace, & when we woke up that day, we had this amazing feeling of peace. They took her off support and she went very peacefully at 1:45pm.