First I should start by saying that I am not a writer. I am not good with my words. I am a nurse! I know and trust medicine. There are many different reasons why I wanted to start a blog and tell you our story. Mostly, I want you to know how blessed we are and how much we love and adore our sweet Oliver. If you are ever faced with a similar situation, I want you to know you are not alone. If you meet someone with a similar situation, I want you to know what you should and/or should not say to them. I knew from the very beginning of the pregnancy this baby was going to be special. But, I guess I should start this story from the very beginning.
In May 2014, I lost a baby boy when I was 12 weeks pregnant. It was absolutely devastating. His name was Christopher. After experiencing that pain, I was not sure I wanted to try for another baby. I mean, we already have a beautiful boy and a beautiful girl. After talking with my doctor and praying about it, we decided to do another round (or two rounds) of fertility meds. In August, I decided that I was going to do this second round of meds and then I was done. I did not want to try anymore. I was tired of the anticipation each month of waiting to see if I was going to get a positive on the pregnancy test. For almost two years, I saw a negative line. I was tired of facing that disappointment every month.
That August, I accepted a new position as a nurse in the ER. I told Luke (my husband) that I was okay with having the two kids and that I wanted to focus on my new job. He was very supportive of my decision. On Labor Day, I knew something was “wrong” with me. I went to our annual Ellis family reunion. I was grumpy and did not want to talk to anyone. And then, the cigarette smoke was making me sick. I ended up leaving the party early. When I got home it clicked. It was three days before my missed period, but I decided to take a pregnancy test anyway. It was positive. Talk about a shocker. I just came to terms with not having any more children. Of course, I was ridiculously excited and nervous all at the same time.
Because of the recent loss of our last baby, Luke and I wanted to keep this pregnancy a secret until I was way past the “safe” zone. We didn’t want to tell everyone we were expecting and then have to tell everyone we lost another baby. My OB/GYN saw me frequently in the first trimester to ease my mind. The ultrasounds showed a viable pregnancy. Everything looked perfect! Then the second trimester rolled around. At 14 weeks I began to have bleeding. A visit to the ER showed an active baby with a good heart rate. I was sent home with the diagnosis of “threatened miscarriage”. I was at my 16 week check when the doctor asked me if I wanted to do a fetal DNA testing called Panorama to look for chromosomal abnormalities. Initially, I told the doctor I didn’t want to do the testing because the results would not change my decision to parent. But, my doctor said that the Panorama was a newer test that she recommended because of it being a greater than 99% accuracy rate. She also stated that she recommends the testing because if there were something wrong, they would be able to provide better care to me and to the baby. Being a nurse, that made perfect sense. If something were wrong with my baby, I would want a team prepared to care for him or her. And, greater than 99% is super accurate!
I remember the exact moment I received the phone call. I remember what I was doing, what I was wearing, what the weather was like, what I had to eat, what I had planned to do that day. I was exactly 18 weeks. When you answer your phone and it is the actual doctor calling, you know something is wrong. She told me she was sorry to tell me that my baby BOY had tested positive for Trisomy 21. At first I heard her say “boy”. I was going to have a BOY! Then, I am pretty sure time stood still when my brain processed the second part of her statement. Did I just hear her say Trisomy 21? Down syndrome? I was in shock. She continued to remind me the test I had done was greater than 99% accurate. She also said she would support me and the decisions that I make regarding this pregnancy. She then offered for me to come into the office to discuss the results in person. I remember thinking I am only 32 years old and Down syndrome does not run in our family. This is when the denial and anger started! I met with her a couple of hours later. We discussed what I could expect in the coming months and the need to begin seeing maternal fetal medicine. I left her office completely heart broken. My world was flipped upside down. I had my future planned, and this was not what I had envisioned. My plan was to have a healthy baby. I was going to watch this child grow up, play sports, graduate from high school, graduate from college, get married, have babies. I was going to watch my grandbabies play in the front yard while I sit on my front porch rocking chair! I began to grieve for the future I lost.
The emotions of denial, anger, guilt, and acceptance stormed through me for months. I have never prayed so much in my life! I would finally start accepting the truth, and then I would be back to denying it. The more I prayed and the more articles and books I read, the more at peace I became with the thought of having a child with Down syndrome. I realized that I was going to be okay. That I had a new future that just might be even better than the one I had envisioned. I am not going to lie. I was scared! Scared to be the mother of this “different” child. Scared because I have no idea how to take care of this little guy. Scared that I would have to deal with mean kids making fun of him. Scared for my other children having to fight for him. Scared because of not having enough time for all the early interventions. Scared because caring for this child is uncharted territory for me. Scared because of all the challenges we will have to face together. Fear of the unknown. Fear of the unexpected. Fear of what others will think of me. Fear that I will not be good enough. And then I realized that these were all things every parent has to deal with at one time or another. Every child is “special”, requires different care, and has different needs. Wow! I am not alone!
When I was 24 weeks along, we went to Nationwide Children’s Hospital for an echocardiogram. Before the scan started I was told that my doctor would call me with results. After the scan, I knew something was wrong when they told me the cardiologist would be meeting with me to discuss the results. The scan showed the baby had tetralogy of fallot. Tetralogy of fallot consists of four heart defects and requires open heart surgery. I remember thinking that I had just started to accept the Down syndrome, but I cannot handle a heart defect (or 4 defects)! I was once again heartbroken! My heart literally ached for this child growing within me that I loved more than the sun, moon, and stars in the sky. They continued to monitor the baby’s heart during the rest of the pregnancy. I began having non-stress tests twice a week when I was 32 weeks. Biophysical profiles were performed frequently (weekly and sometimes twice a week) to ensure the baby was not in any distress and to make sure he was continuing to grow.
At about 34 weeks I began having preterm labor. My doctor put me on bedrest and started me on a prescription to stop the contractions. The rest and medicine worked. The doctor stopped my medicine at 36 weeks. When I went in for my 37 week check, I was 3 cm dilated and 70% effaced. My fluid levels were low, and the baby had stopped growing. Because of the baby’s heart, the doctors wanted to have a team ready for him. An induction ensured that everyone would be there and ready for us. The doctor scheduled my induction for Monday, April 27th. The night after I saw my doctor is when the contractions started. I was so happy that I was not going to be induced! He was coming on his own! The contractions were about 15 minutes apart. I labored for over 60 hours! My contractions were 10 minutes apart and I thought I would never get to 7 minutes apart so I could head to the hospital. Around 3 AM on Sunday, I began to have heavy, bright red bleeding. That is when we headed to the hospital. Once there, the contractions were 5 minutes apart and were lasting anywhere from 4-8 minutes. I wanted to try to have this baby naturally, but after 60 hours of labor, contractions that were lasting 8 minutes, and still only 3 cm dilated and 80% effaced, I decided I wanted the epidural. I got the epidural and they started Pitocin. The contractions came more frequently and were only lasting a minute (thank God). The epidural never kicked in! The pain was getting worse and they told me they would have to replace the epidural. When the nurse checked me, I saw pure panic in her face.
She grabbed her phone and called the doctor and the NICU to get them to our room. We were going to have this baby soon. I went from 5 cm to 10 cm in 5 min. There was no time for another epidural or any other pain medicine to take the edge off. Baby boy was coming! I remember the fear that started within me when she called the doctor. My heart began to race. I started worrying about the baby. What if he didn’t make it, what if I never got see his bright eyes, what if I didn’t think he was beautiful because of the Down syndrome, what if I didn’t love him like I love my other children, what if I can’t push him out? The emotional and physical pain was horrific! I remember hearing the doctor say “I can’t get a heartbeat” (on the monitor) “we need to get him out now”. I began to cry and said out loud “I can’t do this”. The pain was relentless and I was completely exhausted from not sleeping for days. Talk about the willpower a mother has to protect her child! I pushed multiple times without a break until he was born. He wasn’t crying. He was limp and blue. They laid him on my chest and all I could think was take him and make him cry! I held him for a few seconds and kissed him before they took him to the baby warmer. He was beautiful! I loved him more now than ever! My fears were ridiculous! How could I ever have thought I would not love him the same as my other kids? And then I heard him cry! And I saw his huge, bright blue eyes. That second is when he stole my heart.
Our little boy weighed 5 pounds and 2 ounces! When he was first born he needed a little assistance with his breathing, but he was stable. He stayed with us during most of the hospital stay. They performed additional testing, blood work, and echocardiograms. He had a difficult time with his blood sugars, but we were able to control them with supplementation. His heart rate was a little on the high side, but that was to be expected with his heart condition. His oxygen levels dropped a few times, but he was able to compensate. When you are an ER nurse, seeing a pulse ox of 87% is not acceptable. The physicians felt an oxygen level greater than 85% was acceptable for our little guy. When his levels drop, around his mouth and eyes turn blue. I hate it! Absolutely, hate it! But, this is “normal” with babies that have tetralogy of fallot.
I was so excited when the doctors told us he could come home! He was coming home with me! He did not have to be in the NICU or be transferred to the downtown Children’s Hospital. He was coming home. Luke and I still had not decided on a name and the hospital wanted us to fill out the paperwork before we could leave. You would think after 37 weeks we would have come up with a name we both could agree on. Luke wanted Jacob, and I wanted Oliver. Luke finally surrendered and we named him Oliver James. His name fits his personality perfectly. He is MY Sweet Oliver!
Adventures of the Kuhns 
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