Hope

Evey Hope Miller arrived on June 2nd, 2023 at 3:43PM. 
She was 4.1 pounds and 16.1 inches long. 

June 2nd, 2023 was the last day of school for us and surprisingly we had our last baby on that day. We knew Evey would make her way into the world sometime that day. With my track record, I knew that being induced meant a long day. I was induced with a balloon and pitocin around 1:30pm. The nurse kept checking in on me because my contractions were gettting stronger but I wasn't feeling them. I was trying to rest so that I could save my energy for the active labor. They had already told me I would deliver in the Operation Room just incase Evey had any dips during the active labor portion. Since I was on Magnesium for severe preeclampsia, they also told me that I would not be able to get up and walk around, but that I could position myself in the bed to help with labor. 

At 3:10 the nurse came in to reposition the fetal monitor. When she couldn't find Evey's heart rate, she yelled out into the hall that she needed an ultrasound machine. The next thing I knew I was greeted with 7 people in my room, one telling me to get on all fours and another to lay down on my back. They took the balloon out, stopped the pitocin and gave me medicine to stop the contractions. The MFM (Maternal Fetal Medicine) doctor looked at me and said. "I think we need to go ahead with a c-section to keep you and baby safe." At that point Joshua looked up and said, " Wait, what's going on?" because it was happening so fast. I looked over at him and said, "They want to do a c-section" At that point I started crying. Crying because I was nervous about getting an epideral, nervous about getting cut open, and most importantly worried about Evey's heart. I knew I had to stay calm so that she could stay calm while she was inside of me. All of the doctors reassured me that everything was going to be ok. The scariest part was that Joshua could not go with me at first. He had to wait until they got me settled on the table before he could come in. 

They wheeled me into the OR and I immediately looked at the clock. It was 3:14pm. There was an Attending and Resident doing my epidural. The Resident couldn't get the epidural in, so the Attending had to take over. Once I was settled, the Attending talked to me until Joshua was able to come in. They put the sheet over me so that I couldn't see what they were doing, which if they forgot to put it up I probably wouldn't mind because I secretly like watching that kind of stuff :) ; but, I knew they did it to protect Joshua as well. I could hear them talking to each other through the surgery and I kept praying, please let her heart be ok. I turned to Joshua and said, " I just want her to be OK." Right after I said that, I could hear a little cry and the surgeons say, " We haven't even got her out, listen to her cry." Then they pulled her out, showed her to us and she let out the biggest cry! It was a wonderful sound! Joshua and I both started crying. They took her into the next room to take all the measurements and Joshua was able to take some pictures and then a few minutes later they brought her out to us to get more pictures before she was taken to the NICU. 

             

The moment she touched my cheek, she stopped crying. It was like she was letting me know, Mommy, I am OK and everything will continue to be ok!

The rest of the night I rested, pumped, and had Joshua check on her throughout the night. Thankfully, Evey got the very best nurse that night and she has been her Primary nurse since birth. She jokes that whenever she leaves Evey, something happens, but she always gets Evey back on track when she is with her. She gives Evey HOPE!

Hope is a powerful word. It empowers us to have a positive outlook for the future and  to have protection from any challenges we may face in the future.  This is why we gave Evey this middle name. She will be the symbol of Hope as we go through life learning together to raise a child with down syndrome and heart defects. 

            

We visit Evey often in the NICU. We try to go every day, taking a day or two off during the week to recharge. She has amazing nurses and all of them have fallen in love with her. The kids have gotten use to waiting in the waiting room while we take turns going to see her. I get more time with her than Joshua does, but we will be staying longer at the Ronald McDonald House soon so that he can spend time with her like I do during the week. 

She is now 4 pounds 11 ounces. The Cardiologists want her to be as close to 5.5 pounds before they can put a stent in place to help her with her oxygen levels. Once she has the stent in place she will be able to come home. The cardiologists want to have Open Heart Surgery around 9- 12 months to correct her Tetraology of Fallot and atrioventricular canal defect. 

Recently she has developed a blood clot in one of her veins. Her left arm was purple on Friday when we saw her, and me being the mom, I tried to massage her arm and move it in different positions to see if we could get it to move. They did an ultrasound of her upper and lower extremities, Friday, Saturday and today, Sunday. They called and said they would start an injection every 12 hours to help break up the clot and to hopefully get rid of other clots that may form. The cardiologists are not worried about this set back and are going to move forward with the original plan. She is in good hands because Duke is rated #2 in the nation for Pediatric Cardiology surgeries and already, one of the cardiologists calls her beevy Evey. It's so nice knowing she is in great hands!

                                               

Laney colored some pictures for Evey to have in her room. This is also the day we found her left arm purple.

We are still working on oral feeding and are hopeful that she will learn the basics, so that after she gets her stent she will be able to pick it up easily. This is truly an adventure and she teaches me everyday to be hopeful and patient! 

     Be like a Bee- hardworking, wise and delicate.