Evalee Stella-Rose

"Don't tell God how big your storm is, tell your storm how big your God is."

Those who know me well know all about our littlest miracle, Evalee. Evy was born with a sacrococcygeal teratoma at only 30 weeks gestation. Not only did we endure a long, painful and uncertain pregnancy, but over 10 weeks in the hospital after that as well.
When I found out I was pregnant with Evalee it was definitely in the top few best days of my life! It was October 1st, and I was testing 2 times a day at this point. That night I got my first real positive. If anyone else had looked at the test, they would have told me I was crazy and there was no line. But after staring at it for a good 10 minutes, I knew it was there. We were beyond thrilled! My period hadn't yet returned from having our first daughter so we weren't even sure if I was fertile yet so it was an answer to our prayers. I was only 3 weeks pregnant then. Within that same week I told Matt something was wrong. He always thought I was crazy and would ask if I was bleeding or cramping and I'd say no I just have this feeling. After talking to many other SCT moms, I was not the only one with this feeling!

We spent the next 14 weeks being shocked, hearing the heartbeat at every midwife appointment, even feeling a few small kicks and turns. We decided to try and sneak into 3d miracles early and see what sex our littlest was. I knew she was a girl but I had to prove daddy wrong! It was on this day that we learned something was wrong with Evy. The technician had formally worked on the high risk floor at the IWK hospital and told us she couldn't tell us the sex as something was blocking the area. We had NO idea what it was or even where it was. She couldn't localize the mass.

I left bawling, called my midwife, she started working on getting us an ultrasound at FATC, as did the lady at 3D miracles. I went home and started researching what this mass could be. I found ovarian cysts, testicular cysts, maybe it was a sac of organs outside her body, we had no idea. This was a Saturday. Every day I called my midwife 5 times a day to find out when my appointment was.

On Tuesday we found out we finally had an appointment.. 12 days later!! I was sick to my stomach! I went straight to the QE2 emergency and told them I wasn't leaving until someone gave me an ultrasound and told me what was wrong with my baby. They gave me an ultrasound and the woman told me she would go get the specialist, he came in and gave me another ultrasound and told me he thought it was a sacrococcygeal teratoma but he couldn't be sure as he had only seen it once before and it wasn't nearly as big. On the way home I researched and read it was a small sac at the base of the spine that could easily be removed after birth. I was relieved. When I got home and researched on my computer, google imaged and the whole 9 yards, I broke down. Matthew, my soon to be husband came home to find me hyperventilating, and just overall insane. I thought for sure I wasn't strong enough to deal with this! Why us? What did we do to deserve this? We cried together for hours.
Just some information on SCT's. It is a large benign tumor that begins growing at the base of the tailbone. It happens to about 1 in 40000 babies but the severity ranges greatly with the different types. It has no genetic component it is just a rare thing that happens. The tumor is made of stem cells that just begin growing into this tumor.
Cystic tumors are much less dangerous and can even sometimes be drained. Solid tumors are far more dangerous and usually have several veins and arteries feeding the tumor, allowing it to grow quicker and feed off the baby. SCT's can grow in many different ways, mainly inside the pelvis, mainly outside, in both etc. Evalees was inside the abdomen as well as a large component on the outside. Since it is solid it means it is comprised mainly of tissue and so there are a lot of veins entering and feeding the tumor. This made her heart work twice as hard and one of our biggest risks was hydrops which is fetal heart failure because her poor little heart was just working overtime.
Another risk is polyhydramnios which is an excess of fluid in the amniotic sac. This is dangerous because your uterus is getting so large and so heavy it can easily trick your body into thinking it is time for labor and your water may break or you may just go into labor. It needs to be drained via therapeutic amniocentesis which carries risks as well.
Another risk is the tumor rupturing which will then bleed out and result in fetal death. There is NOTHING that can be done to for see this or to prevent it unfortunately. These are just a few of the many risks we faced, there was also maternal mirror syndrome, bladder and bowel problems, fetal anemia etc.
I get a call first thing the next morning asking me to come in right away to FATC. (Fetal Assessment and Treatment Center) I rushed in and Dr Van den Hof saw me. He took a quick peak then asked if one of his students could do the ultrasound first. I agreed, as I am all about teaching and learning myself. James did my ultrasound and did all of the babies measurements (she was a big girl) he avoided the area which made me more and more nervous but he was kind and I let him do his job. Finally we got to the teratoma. Wow, it was so much clearer on this machine. My poor little baby with a big lump on her bum. Her teratoma at 18 weeks measured 2cmx3cm. It was both internal and external and was mainly solid with a few small cysts. It had a relatively high bloodflow. My fluid was also generous and they thought I may need a therapeutic amniocentesis in the future as polyhydramnios is also associated with an SCT. Dr Van den Hof sat on the bed with me and I knew what was coming, so I asked him not to say a word and started crying. I said it never was and never will be an option for us. Legally he told me he had to say it. He said that there is a high risk that she could die in utero from heart complications and asked if I wanted to terminate the pregnancy. No, no no. My babies are strong. They are fighters, my first daughter weighed 10lbs 4oz and was as healthy as a horse, surely Evalee would be too. Her heart and all other organs were functioning properly. I was told that I no longer needed my midwife as I would be followed there by him and his team. I would be seen weekly for ultrasounds.
So for the next 12 weeks I was in and out of the hospital, steroid shots, weekly and then daily ultrasounds, many hospital stays, the last being 2 weeks, amnio drainages, MRI's, we used all of the hospitals resources. We were so blessed to live so close to an amazing hospital with such amazing, caring doctors. We watched as our daughters heart was overworked and grew weaker and weaker. They didn't expect her to make it to 23 weeks, let alone 30.

On April 4th I started having really bad contractions, I didn’t sleep a wink all night long. My contractions were so incredibly painful, it took all I could just to bite my lip and bare it. On April 5th I called the doctor, but I was still at 2cm. He said Evalee looks fine and Dr Van den Hof said her heart looked pretty good too. Evalee weighed 4lbs 9oz during her daily ultrasound, I was so proud of her. Normally with this type of tumor their growth is stunted, because its feeding basically a parasitic twin. Not our little fighter.

Throughout the day the contractions continued to get worse and worse. Finally at 1130pm, after trying a shower and doing whatever I could to stop the pain, I called the nurse. Looking back I am not sure if I was in denial that it was truly happening or if I was honestly unsure. I had been having bad contractions for so long and nothing had changed. The nurse checked me, couldn’t tell what I was, so she called another nurse who said I was a 3-4cm. They took me to the bathroom, got me changed in Johnny shirts and rushed me down to labor and delivery around midnight.
The contractions were so terrible and so close together it was very hard to deal with the pain and the fear and the million questions I had about who was going to deliver my sweet angel. I was checked and I was a 5 with bulging waters, almost 2cm in 20 minutes! She was coming fast and strong and there was no stopping her. The contractions got worse and doctors were scurrying everywhere trying to get together a team and a plan. My midwife was on vacation and so Rachel, another midwife was called. Matt called his mom to round everyone up. They took my blood and gave me a drink to stop the nausea and I was rushed into the OR. I was immediately given an IV, and a Spinal, flipped over and they started! I was terrified and just wished there wasn't a huge curtain separating us. I hadn't even realized they were cutting as I thought for sure I would feel something but nope! I feel as though I did miss out on part of the labor experience, but I did labor for so long before I started dilating and I feel as though I did my part and so did she. It was just as emotional as Addisyns birth. I started to feel the tugging and the pulling and the pressure and they just couldn't seem to get her out. They were all quiet whispers and I was trying so hard to pay attention to them but my mind was racing with a million unanswered questions. FINALLY at 2:01am she sprang into this world, I told Matt to look as Rachel snapped pictures, Matt ran to be with the baby, and I waited and waited what felt like hours for her to cry. I prayed and prayed and finally the tiniest most beautiful cry! My sweet baby was here and she was ALIVE!!! 12 weeks of wondering every single day how this moment would play out, had all come to realization. I had the strongest little baby ever. She astounded every doctor. I got to see her for the briefest moment and kiss her sweet cheeks. She was rushed off to the NICU and Matt followed her. They finished closing me up and I headed to recovery for a very long wait! Within 20 minutes of being in recovery the spinal had completely worn off as it took them so long to take her out. I had full control over all of my limbs. The fundal checks were unlike any physical pain I had ever experienced in my life. They gave me dilaudid and Oxy contin and nothing could stop the pain. I didn’t even care, I just wanted to see the sweet miracle we had created. FINALLY the waiting period was up and I was taken in my bed to go see her. She looked just like her sister, but a miniature version. She was perfect. I truly don’t even remember seeing the tumor. I don’t remember it ravaging her body. Looking back at the pictures I can’t believe she is the same sweet baby she is today.
The inital plan was to have her surgery a week or more after she was born. Let her grow strong and then operate. That plan didn't work. Her platelets were so low, the tumor was corroding and it was very dangerous to keep her in that condition. So at only 1 day old, we were meeting with the surgeons to sign the papers. They told us this surgery was very risky. Her tumor had so many veins and arteries feeding it that it was likely she could bleed out and pass on. Up until this point we had been numb, blissful, she had survived, she was here, we could touch her, smell her, see her.. Surely the Lord couldn't take that from us? We signed the papers and went and saw her off. We gave her kisses and we informed all of our friends and family who began praying for her strength during the surgery. It was the longest wait of our lives but when we heard the news it was unlike any joy I had ever experienced in my entire life. My baby had MADE it. My strong beautiful babe was here to stay.
We spent the next 10 weeks battling many other problems, attempting to wean her from breathing support, pain meds and trying to figure out why she was having 20+ apneas a day. The day she came home still feels like a dream. It was a product of hard work, and determination and a WHOLE lot of prayer.
Thank you for reading her story, for some of you it might be the hundreth time you're hearing it but I hope it still leaves you with a feeling of hope in your life. Just because someone tells you it can't be done or it shouldn't be done does not mean they're right. Miracles happen everyday. Never give up before you've even begun and if life gives you more than you can handle; kneel.