Faces of Loss, Faces of Hope

Emily

Mom to Baylee Grace

February 26th, 2010

9:11am-10:18am

Winston-Salem, NC

I found out that I was pregnant with Baylee in July of 2009. My husband, Adam, and I already had 2 wonderful boys, Tyler and Noah. Tyler was 10 and Noah was at the time. I was suffering from a pretty bad case of "baby fever". We were very excited when the test came back positive.

 

My first prenatal appointment was in early August. They did an ultrasound and I was too early to see anything. They scheduled me to come back in a couple weeks. During that time we went on vacation to the beach and I was a wreck the whole time. I felt too good to be pregnant. I kn ow that sounds crazy but I was so sick with Noah and that had been the norm. 

 

At our next appointment with my OB they saw the baby and she was dancing away. I was so happy! I had gestational diabetes with Noah and had to take daily insulin shots, so I had already been monitoring my blood sugars. I told my doctor that I had some pretty high numbers so they decided to start my insulin regime again. Other than that everything was going great.

 

Our OB also thought due to the diabetes we should have a more detailed anatomy ultrasound than their office could do. We scheduled that at our local hospital. He told us that gestational diabetes can sometimes cause heart defects. It was just a precaution.

 

We had that appointment at 18 weeks. The US tech scanned me and told us we were having a girl! A girl after 2 boys!!!! I was so much more excited. I love pink and I wanted a girl so bad! The doctor came in and told us that everything looked good. She was a little small so the organs were a little difficult to see. He told us if we wanted we could reschedule another ultrasound in a few weeks but he thought we didn't really need to. I scheduled it anyway. That's just me.I did come close to canceling it a couple times. 

 

November 30, 2009 changed my life forever. We went back for them to recheck Baylee. The same US tech did our scan. I noticed that she wasn't as chatty as she was a few weeks before. I just thought maybe she's having a bad day. She did my scan and then said she was going to let the doctor take a look. I got a very uneasy feeling. They came back in the room and the doctor scanned me again. The doctor sat down and told us that our baby most likely had CDH, which stands for congenital diaphragmatic hernia. I immediately started to cry. The words "birth defect" alone made me lose it. CDH is when the diaphragm doesn't close properly and the hole allows the lower organs to migrate into the chest cavity. It is very serious due to the fact that it can effect lung development. She explained that it happens around the 7th to 10th week of gestation. My first question was, did I cause this? She assured me that I did not do anything wrong, they really don't know why it happens. Then we asked her what Baylee's chances were? She told us that Baylee only seemed to have her stomach in her chest so it wasn't as bad as it could be. She said that it would be a long road ahead of us. We left the hospital in a daze. I really don't remember driving home. I know that Adam did call both of our parents. I'm not sure that they full understood what we meant. The word hernia makes everyone think of a simple procedure. Someone at Adam's job told him that a baby at his church had CDH and had repair and was home in a week. People do mean well.

 

I googled CDH and it made me more hopeless. I was shocked to see that the national survival rate was only about 50 percent. That rate hasn't changed very much in many years. CDH babies are very sick and a lot require long NICU stays and some even need ECMO. ECMO is a heart/lung bypass. I read everything I could, which really wasn't much. I think I cried for a week. 

 

After our initial diagnosis things moved along quickly. I had a MRI to see what exactly was in her chest. It turned out to be her stomach and some bowel. We met with the pediatric surgeon that would do her repair. He gave her really good odds, he said about an 80 percent chance. I transferred my care to a perinatology group. We had 2 heart ECHOs to see if she had any heart defects to go along with CDH. They both came back good.                             

 

During my 7th month things began to change. I developed severe polyhydramnios. Polyhydramnios is when you have an excess of amniotic fluid. Baylee's stomach wasn't working so she couldn't "recycle" the fluid the way a normal baby could. I made even more due to the diabetes. The doctor was beginning to get worried. She could develop hydrops, which means fluid build up around her major organs. It is very dangerous. I became huge. People would ask if I was having triplets. The fluid was massive. I began to have problems breathing and moving. They decided to do an amnio reduction to reduce the fluid. It would come back but at least I would have a few days of relief. They did the procedure and drained about 4 liters of amniotic fluid. We decided to send some fluid off to see if she had any other chromosomal problems. Baylee handled the procedure well. It caused a few contractions but they gave me meds and they stopped. I had to stay in the hospital on the antepartum unit. They just wanted to monitor her. They gave me a round of betamethasone shots to help try to speed up lung development. Her lungs were already compromised so any little extra would help.

 

I waited on pins and needles for the results of our genetics test. I kept asking anyone that came in my room, doctors, nurses, the janitor...ha! The genetic counselor came in the afternoon and told me that Baylee's initial testing came back completely normal. CDH is often associated with other chromsome problems. I was happy because at least CDH was the only obstacle we were facing. They kept me in the hospital because they really expected my water to break at any time and it could be very dangerous. Excess fluid can also case cord prolapse which could be deadly for the baby. I turned 30 years old in the hospital...it actually helped me not dwell on getting older. I did get to go home for about a week but i had to go back to the hospital for daily ultrasounds. 

 

The fluid built up again in a matter of about 2 weeks. It got hard to breathe and very uncomfortable. I just wanted to my baby to be okay. I got a little frustrated and I feel guilty about that now. They were going to send off fluid this time for lung maturity because I was about 33 weeks. They did the procedure and my dad was with me because Adam had an important meeting at work and he was going to save most of his time off for when Baylee was in the NICU. Baylee decided to be feisty that day and she did her best to grab the needle. They were only able to get about 2 liters. The next day we got the results that the test came back immature. I had another round of steroids. They caused my blood sugars to go up pretty high so I had to be put on an insulin drip. For that I had to be moved to Labor and Delivery just in case I needed to be delivered if they got dangerous. I had to have my sugars checked every hour for 24 hours. Stick after stick....I just wanted Baylee to do well. I prayed and prayed. 

 

After a few days at the hospital I got to go back home and see my boys. I went to the hospital for my daily ultrasounds. Baylee still continued to do well on her biophysical profiles but a couple times I had to move around and eat a snack to wake her up. I noticed that she was getting a little sluggish. I knew her resting times and she was beginning to have more and more of them. 

 

I was sleeping on February 25th and my phone rang, it was my OB. He said they had all talked about my case and they thought that Baylee was being compromised by the fluid and it was best for her to go ahead and be  delivered. I agreed and we made arrangements to go to the hospital and if she looked stable on ultrasound we would do a c section the next morning. 

 

My parents came to take me to the hospital and Adam would come after work. Baylee was stable. They admitted me to antepartum for the night. I didn't sleep but a couple hours. I think it was the most afraid that I've ever been. Not knowing how my baby was going to be was so hard. 

 

Adam came to the hospital the next morning around 6am. The c section was scheduled for 8 am but it could be delayed or a little earlier. My parents came next. We are all very nervous and no one said much. The nurse came and gave me some meds to calm me and some horrible antacid that is standard in c sections. The NICU doctors came in and told us they were ready for Baylee and that no matter what she would be very sick, even in the best case. The wheelchair came for me at 7:45 am and everyone followed me down the hall. They showed my parent where to wait and Adam came with me to get suited up. I walked into the c section operating suite and they check Baylee's heart rate. It was 154. I hopped up on the table and everyone introduced themselves to me. They hooked me to the BP cuff and I sat on the side for the spinal to be placed. It took him a few tries to get it in the right spot but it wasn't that bad. I saw the NICU staff waiting at the bassinet. I was terrified but trying to keep it together. I became numb and they started the section. I know it took them a while to break my water....there was a lot of it again. Baylee was out a few minutes after that and they handed her to the NICU doctors. I wished she would shock them all and cry but she didn't make a sound. I didn't get to see her at all but Adam said she looked good. I tried to see but the doctors and nurses were in the way and I knew they were helping her. After about 10 minutes the doctor came over and told us that she was stabilized enough to go to the NICU. He also told us that the next couple hours would be critical.

 

Adam was told to stay with me while they finished and transferred me to PACU. They would come and get him to see her in an hour. Not 5 minutes later the OR phone rang and they wanted Adam to come to the NICU. I thought that meant she was stable and doing well. I thought it was a good sign that he got to see her before they transferred her to the Children's Hospital.  The phone rang again a few minutes after he left and it was NICU wanting me to come down. The doctor said that I was too unstable to go, I had lost quite a bit of blood. They convinced him to let me and he decided he would go too. He said he would monitor me. I was very excited  because I never thought I'd get to see Baylee until a couple days later.

 

They switched me to a stretcher and zoomed me through the halls to the elevator. I never got it. I was so excited to see my little girl. I didn't get their urgency. Stupid me. 

 

The NICU was quiet and I saw Adam standing there and he was crying. Why? There were my parents and they were crying. A man I didn't know came over and hugged me (the hospital chaplain) and said I am so sorry. For what? I couldn't get it. I think I went into shock. I thought I was in the wrong place. I saw Baylee but I didn't believe it was her. She was beautiful but very blue and she looked like she was sound asleep. She had every tube and cord you can imagine hooked to her little body. She had a head full of black hair just like her daddy. She looked so much like me. I was amazed. Here comes the doctor telling me that my baby is dying. No she isn't.....I didn't believe her. She was going to be okay. She got right in my face and said hold your baby or let her die on all these tubes. I could not comprehend any of it. I shook my head and they picked Baylee up and handed her to me. They left the vent in and the doctor said she wasn't breathing even on the vent. I decided to take her off after they said she would never be the Baylee we wanted if we kept her on it. They took it out and I started talking to her and her heat rate went from in the 60s to 120. I want to believe that she knew it was me. I held her while she took her last breath, she was very peaceful the entire time. She never opened her eyes. I hope and pray that means that she felt no pain. I worry about that. 

 

February 26, 2010 changed my life forever. It was the best and worst day of my life. She was on the earth for 67 minutes and she has forever affected me for the better. I miss her. I know she is happy and is in my heart forever. 

 

Emily blogs at bayleegrace.blogspot.com 

You can contact her at emilytyler30@yahoo.com