Mom to Emery Rose
October 20, 2015-October 21, 2015
In August 2014, I was diagnosed with diminished ovarian reserve and told that I likely would never be able to conceive a child again. My husband and I accepted this and actually were not looking to have any more children. At the time, we already had a boy 11 and a girl 4. It was something we just took off of our radar and continued on.
In April of 2015, I discovered I was pregnant. We were shocked and nervous, but I was still so excited. The day I found out I was pregnant I went in for blood work. The very next day the doctor’s office called and said that I had very low progesterone. I remember the nurse asking, “Are you bleeding, spotting or cramping?” I told her no and that I actually felt fine. She seemed quite surprised and said she would call in a prescription for progesterone and that I needed an ultrasound the same week. The ultrasound confirmed what we already knew and they determined a due date of December 10, 2015.
We started making preparations for our new addition. I had terrible nausea, but other than that felt OK. I also had the Progenity test and an AFP test. Both came back completely normal. By having the Progentiy test we were able to know in our 11th week the sex of the baby, which I found out, was a little girl. I kept this little secret to myself until Father’s Day when I gave my husband a pink onesie that said “Daddy’s Little Girl”. Shortly after we decided to name her Emery Rose. Emery’s big sister, Jillian, wanted to name her Princess Rosie, so we thought this was a good compromise.
Our 20 week ultrasound came and went and according to my OB everything looked great. I remember at my 20 week ultrasound Emery was stubborn and would not flip over so we only got a good view of her left side. The tech did not seem concerned and neither did my OB.
When I returned for my 24 week appointment I let my OB know there had been a major change in my pregnancy. My belly hurt to the touch, it was growing fast, I felt winded all the time and my feet were already starting to swell. It was August and my daughter, Jillian, was a big baby so my OB dismissed my “complaints” as normal.
When I left that day, I knew something just wasn’t right. I always would say, “she’s killing me”. My back and belly hurt so bad all the time and I could not understand how a pregnancy could be so painful. My next appointment was when I was 27 weeks. As soon as my OB came into my room she commented on how big I was and that she needed to measure me. I was measuring almost 34 weeks. She wanted to schedule a growth scan but didn’t want to do it until 30 weeks. I begged for one that day and she didn’t feel it wasn’t necessary.
Two days later I was in L&D as I was having terrible pains in my belly. I was contracting, but nothing alarming. It was thought I was developing preeclampsia and told to go home rest a day and return to the office the day after. When I followed up in the office they discovered I was having tachycardia and sent back to L&D. I again asked for an ultrasound but was told it wasn’t necessary. They did want to do a round of steroid shots in case I was in fact developing preeclampsia. I was sent home over the weekend and told again to return to the office on Monday.
That Monday I went in with the game plan that I was going to politely demand an ultrasound to see what was going on. I kept having this uneasy feeling and couldn’t do anything to shake the feeling something was wrong. I didn’t have to demand the ultrasound, my OB suggested it. I was still tachycardia and my BP was slightly up. Most alarming to her was that I had gained almost 10 lbs over the weekend and nearly 25 lbs in 18 days. As the technician did the scan I just knew something was not right. My OB confirmed what I knew all along, something was wrong. Our little Emery had fluid in her tummy, on her skull and excess fluid on her skin.
The following day we were referred to a material fetal specialist. After a 3 hour appointment and most of it spend waiting in a room while the doctor was on the phone in the next room. He finally came back in and said we could go to Cincinnati, Philadelphia or San Francisco. Those were the only hospitals in the nation that would take our case. Our daughter had a mass in her chest. This mass had flattened her diaphragm, moved her airway to the left, was putting pressure on her left lung and shoved her heart to the side wall of her chest cavity on the left side. I couldn’t breathe or even talk. I was so confused and didn’t even know what he was talking about. My mother in law, who was with me, calmly said we would go to Cincinnati as it was the closest.
Two days later we had appointments scheduled at Cincinnati Children’s Hospital. A MRI, fetal echocardiogram and detailed ultrasound. After a full day of testing we had a team meeting and were told what we were facing. Emery had a CPAM (congenital pulmonary airway malformation). Basically a mass formed instead of a normal right lung. These are normally caught at the 20 week ultrasound. (Remember she was stubborn and only showed off her left side.) This mass was either missed or formed after the ultrasound and was growing fast. Any mass larger than 1.6 is considered large. Hers was 5.34. Because of the pressure on her heart she developed hydrops. Hydrops are in utero heart failure and is seen by fluid on the skull, in the tummy and skin edema. She had fluid present in all 3 areas. When a fetus has a CPAM and cannot work the amniotic fluid the way they are supposed to a mother can develop “mirror syndrome”. That’s where the mother starts to mirror the baby’s condition and this can be fatal to the mother. They felt I was developing this and I also had polyhydramnois (too much amniotic fluid). Polyhydramnois puts the mother at risk for rupture and then hemorrhage.
During the team meeting we were offered “comfort care” which meant terminating the pregnancy. That was not an option for us as I was not giving up on her. I was told the pregnancy was very high risk and that I needed to stay in Cincinnati until delivery. This meant leaving my children, husband and work. I looked at my husband and said, “I won’t give up!”
I was staying in Cincinnati while my husband was at home. He would bring the kids over on the weekends while I was staying at a hotel. I had doctor appointments, NSTs and ultrasounds twice a week. I was not allowed to drive and could not be alone. My mother flew in from Iowa to stay with me. I was contracting at every visit but it was called irritability of the uterus. By this time I was measuring 43 weeks and had an AFI of 47. AFI is Amniotic Fluid Index. Anything over 25 is polyhydramnois and normal for 3rd trimester is around 15.
After almost 2 weeks of being in a hotel I was admitted to the hospital. Emery looked great on ultrasound but I was started to get “sick”. By now I was measuring 52 weeks and my AFI was alarming high…55. My heart rate was fast, BP slightly high and I was swelling to the point they could not get refluxes from my legs when they tried. When the doctors and nurses would measure my belly they said my uterus was touching my sternum. I was at too much risk for rupture and then hemorrhagic that it was decided to do an amniotic reduction.
The morning of October 20th I had the amnio reduction. I was 32 weeks 5 days. My team and her team were on standby. That morning they took 6 1/2 liters from my uterus. They said it was unheard of to take that much fluid and remember I was at a hospital that sees the worst cases in the nation. After the amnio reduction I knew immediately it was bad. It was as if all my organs shifted down. My doctor kept saying I should feel better now that all the pressure was off my lungs but instead I felt like I was suffocating. I couldn’t take a breath in and never felt Emery move after the reduction.
As the day went on my BP continued to rise, Emery’s heart rate was all over the place. She was having decelerations and then would have high accelerations. Her heart rate and mine at one point was the same in the 170’s. My BP was climbing and was 179/101 the last time they let me look at the monitor. I had a biophysical profile in my room and they gave her 30 minutes to respond. She scored a 2. The MFM came into my room and explained that babies sometimes do better outside and the plan was for me to deliver and that they needed to move quickly. I looked at my husband at that moment and said, “We are not getting out of this ok.”
I had been admitted to one hospital, but needed to deliver at Children’s. In the morning I had been taken to Children’s for the reduction and then had an ambulance ride back for monitoring. Once the decision was made that Emery had to be delivered I started to get really nervous. I remember my nurse telling me to relax and that I was just an ambulance ride away. She went on to say no one had ever needed lights and sirens and that everything was very controlled and I had no reason to worry. And of course as soon as we got into the ambulance they hit the lights and sirens. I still have no idea what happened, I just remember they kept telling me to just hang on and that we were almost there.
It seemed like forever to get me into the OR. Because of the mass, Emery would not have an airway exposed when she was delivered and so I had a modified EXIT procedure. What this means is that the doctors partially delivered Emery and while she was still connected to me via umbilical cord the fetal surgeon performed surgery on her to remove the mass. At that moment I was the only thing providing oxygen to her. I will never forget the sound of them bagging my daughter to keep her blood circulating. I still sometimes wake up in the middle of the night and feel like that blue curtain is in front of my face and can hear that sound of them pushing air into my daughter. Once the mass was out and she was able to be intubated, she was delivered and the cord was cut. I can tell you the exact moment this happened because I instantly felt empty. I heard the footsteps as they rushed into the adjacent OR to continue working on her. At one point someone from her team came to my head and tried to give me an update on her. I told them I didn’t want to hear it. My surgeon asked me to please listen and that it was good news. I still insisted that I didn’t want to know. I’m not sure if I had my guard up and was protecting my heart or if I really just knew.
A couple hours after her being born my husband and mom were able to go see her. For being 32 weeks she was 6lbs and 18 inches long. He said she was perfect and looked great. She did have a lot of tubes, a chest tube and was on total support. They were able to retrieve 2 dime size pieces of right side lung tissue to place in her. The hope was that these tissue pieces would grow and by age 2 or 3 would be functional and by age 8 or 9 it would be fully functioning. What no one knew was the damage on the left lung.
The mass had put too much pressure on the left lung and basically prevented it from growing. This is something that could not have been seen on ultrasound or MRI. They knew the left lung was compressed but they felt once the mass was removed it would inflate and begin to work. It never did. It was too small and the blood vessels were too constricted that they could not work oxygen the way they should. She began to retain carbon dioxide. We were at a crossroads. If she went on one machine it would cause one problem and if she went on another it would cause another problem. There was nothing we could do. When we were given this news I was still recovering from my surgery and with medicine it was as if I could hear her doctor but couldn’t comprehend what the words he said really meant.
I was told that I was being taken to the NICU so that I could spend time with her. Seeing her for the first time was amazing. Her body sunk into mine as if she knew she belonged to me. I held her and just studied every inch of her not wanting to ever forget it.
In the morning, which was only a few hours later, her doctor visited me once more. He explained that Emery was beginning to pass on her own and said that I needed to hurry to get back to the NICU. The Chaplain met us there and she was baptized. I got to hold her again and this time it was apparent that she wouldn’t be with us long. Her nurse had cleaned her all up and put a pink bow in her hair. I kept thinking of all the bows and headbands I had waiting for her at home that she would never wear. I spoke to her and prayed to God that he would accept her into his arms and love her with more love than I could ever imagine.
Emery Rose was only with us for 16 hours but the mark she left on our hearts and in this world could never be measured. She never cried and I only have one picture of her with her eyes open that another doctor took during surgery. The hospital did take several pictures of her before she passed and I will forever cherish them.
I remained in the hospital for four days following her birth. When we finally made our trip back home I can’t even put into words how it felt. I was excited to see my kids that I had not seen in a few weeks and yet carried so much pain and hurt from what I was leaving behind.
We had her funeral exactly one week after she was born. Our pastor performed the service. He gave a great message on the promise we all have been given through Jesus that we will be reunited again with our dear Emery Rose. I’m holding tight to that promise and looking forward to that day.
You can contact April at: firstname.lastname@example.org