The Story of Ella Rose

Hello,
Welcome to Ella’s story.

Ella was conceived after two back to back miscarriages & two years & 8 months later of trying to conceive. I took a round of clomid & we were so very excited when I found out I was pregnant. Every milestone and every week we passed was a blessing to us, as another miscarriage happening was constantly on my mind. At 17 weeks I decided to get the NIPT test done to see if our little one had any genetic conditions. I thought it would be a good idea, just incase. A week later it all came back normal & we found out she was a baby girl! Ella Rose, the name I’ve had picked out for years for my first daughter.

We started to get the cutest girl stuff we could find, and started to work on her nursery. I remember I got a cold before my 20 week anatomy scan, and I almost didn’t go just because I didn’t feel good, but I was so excited to finally get one of those 3D pictures of my baby and maybe see some features of her, if she had daddy’s nose, or my lips. To see how big she was getting. Well, I wish I didn’t go that day. I wish I stayed home. That day was the start of a very hard journey for our little girl, and us. I remember getting to that room, and waiting for the ultrasound tech to come in.

She was very quiet the whole time, concentrating on every little thing. I kept asking questions. “What’s that?” “Does that look normal?” “Is she for sure a girl?” I was probably being very annoying. But I was concerned. That’s a mama to be’s job. To care about her growing little one. She finally spoke and what came out of her mouth seemed awfully rude to me, at least at the time. “I can’t get you any good pictures of your baby today, she’s not wanting to move around for it, sorry” as she handed me a picture of a foot I could barely tell was even a foot, and her heart beat. I was so bummed.

I thought to myself, are you kidding me? This is the appointment where all my friends and people I know would get such cute photos of their baby. She cleaned the gel off of me and told me to go ahead and use the bathroom and then come back. So I did. I came back and was waiting in that room for at least twenty minutes, wondering what could be taking so long. I looked at my fiancé almost in disbelief on how this day is going so far.

The ultrasound tech finally came back and told me to go wait in the room next door, my OB wanted to talk to me. My heart immediately sank. I felt an awful gut wrenching feeling and immediately knew that something was going to be wrong. But I didn’t think it would be this bad.

I remembered that if your doctor wants to talk to you after an anatomy scan, that something wasn’t right. We went to the room next door, and it felt like hours when I knew it was minutes before my OB came in. She had this look of doubt on her face. She sat down, and began telling us that they found some alarming things on ultrasound today. She starts saying they saw a clubbed foot, some cysts on her left kidney, and fluid on the brain.

As soon as I heard “fluid on the brain” I immediately started to hyperventilate and cry. I was shattered. How could this be? Our sweet rainbow baby was sick. No, this wasn’t how this should of went , this wasn’t what I prayed for every night. We left the clinic with tears streaming down our cheeks, and a referral to a specialist an hour away from us. We cried the whole car ride home.

A week later we got an appointment up at MFM to do another ultrasound to confirm or deny what my OB said they found. When we got there we saw the genetic counselor first who discussed what my OB said they found on ultrasound. She explained they were going to do another ultrasound to confirm if Ella had all they saw. And if she did what it meant for her.

They start the ultrasound, and we finally got to see her little profile, she was so precious. The cutest nose. She confirmed she was a girl for us, and we saw her kicking away in there. The MFM doctor comes in and confirms Ella has hydrocephalus (fluid on the brain) , a very cystic kidney, left clubbed foot and a 2VC. She told us Ella wouldn’t be normal and would be very sick. That right now she was stable, but out of womb she might not survive. We were left in that empty ultrasound room to cry & figure out if we were going to continue our pregnancy, or let our little girl go.

Two weeks pass and we return there for blood work to see if we carried any genetic disorders we could of passed to her. An echocardiogram on her heart, and an amniocentesis. The amniocentesis was very scary and painful. My fiancé held my hand the whole time as I kept repeatedly saying I couldn’t do it. Her echocardiogram lasted what felt like hours, and the results told us her heart was pretty healthy, except for two things they wanted to check on later, which seemed like great news to us at the time. The amniocentesis came back normal, and so did every genetic test we did. We were lost and so confused on what caused all of this.

The what ifs tortured me. No mother should ever have to make a decision like that for such a wanted baby. Oh she was all we ever wanted. I kept thinking how cruel this was. I went back and forth on what to do. I decided to continue to carry her till term at that time. When MFM couldn’t give us anymore answers, we went to a huge hospital 4 hours away from us hoping for better answers on our little girl. Doernbechers children hospital- a place I never thought I’d step foot in. But I was there, alone, waiting for better answers, holding onto the small sliver of hope I had left.

After seven appointments in one day at 26 weeks pregnant, I was exhausted and ready to leave. The OB comes in and explains to me everything she saw, and it was more than I was told before. I didn’t know if I could handle much more.

She confirms Ella had severe hydrocephalus, IUGR, she was only in the 18th percentile, and her head was in the 90th. She had MCKD (multi cystic kidney dysplasia) of both kidneys. One was almost non existent. A 2 vessel cord, a left clubbed foot, and coarctation of the aorta in her heart. It was confirmed if her kidneys weren’t working she couldn’t get the surgeries she needed to live, so we started to talk about palliative care after birth.

My heart was even more shattered than before. My poor baby. My poor little girl. How could life be so unfair to her. To us. I felt like we were being punished. I was praying for a miracle, for them to be wrong. I already fought so hard for our little girl, and nothing I did was enough, she was still going to suffer with these multiple fatal diseases.

We go to our appointment at MFM for a check up on Ella at 28 weeks. He told us she was stable , but he was now worried about me. My blood pressure was pretty high and I had 4 plus protein in my urine. He suddenly tells me he thinks I may have preeclampsia and wants to send me up to Portland , 4 hours away where the nicu was, that day. I started to panic and told him I couldn’t , not yet. He agrees & said to do a 24 urine collection, and check in with my OB the next day. So that’s what we did.

The next day I go in, and my blood pressure is very elevated and my Ob wants to send me away to Portland in an ambulance. I was terrified , I knew what decision I had to make, I knew my decision before to continue to carry her to term would possibly make me sick, and it did. I cry to my OB and told her I want to deliver her in the hospital there, I wanted to be able to meet her, hold her, and say goodbye.

I told her OHSU already told me they wouldn’t do much to save her before 32 weeks. She tells me she understands and agrees my decision is best. She then sends us to the family birth place, to deliver our sweet baby girl. The whole car ride over was full of tears and regret. I didn’t want to do this, but I had no choice, my life was potentially on the line now.

I’m put on magnesium right away to lower my blood pressure, and to monitor her. I was so scared so that definitely didn’t make it any better. She comes in and tells me how induction will start, and how it could take days because my body knew how to stay pregnant. I knew I wanted that, I didn’t want a c-section. She agreed they didn’t wanna do one unless needed. She comes back and does an ultrasound to see if Ella was head down. She wasn’t, she was breech. She tried to turn her and she just wouldn’t, she said if we continued with a vaginal birth It would potentially cause Ella to get stuck and pass in the birth canal, and could cause me to never be able to have more children someday. So we decided to go with an emergency c-section.

I remember getting to that freezing cold operating room. Out of it from the magnesium. They crunch me up on this tiny white table, and begin trying to give me the epidural and spinal block. I remember telling the nurse I wasn’t strong enough to do this, that I couldn’t do this. And I remember her sweet voice telling me I was and I could. Giving me strength.

I remember they gave me fentanyl, which made me feel like I was gonna die. Then I see my fiancé , Riley, and I came back to. A few minutes later, our daughter was born. October 28th, 2021 at 9:15 pm, weighing 2 lbs 7 oz and almost 15 inches long. She came out crying, we were so shocked that she did. I remember saying “oh my baby, my beautiful baby is she alive” she was such a fighter. We both cried so much just at the sight of her. She grabbed my thumb with her little hand and looked right at me. In that moment I never felt a love like that. A mother’s love.

She looked just like her daddy, had his nose, ears, my lips and a head full of dark brown hair. She was perfect. She fought to live for an hour and 24 minutes and passed at 10:39 pm peacefully in my arms. I already knew she had before it was confirmed. We had a cuddle cot in our room, and I held her as much as I could when I wasn’t out of it. We left the hospital room together 3 days later, I handed her off to the funeral home.

We drove home with broken hearts and a white box.

It’s been 5 weeks now, and Ella is constantly on my mind. She will forever be our perfect angel, she will forever be remembered, and everyone will know how wanted and loved she was.

This is her story, our story, of our beautiful Ella Rose Pettibone.