It's nearly 2 am and I am in the middle of my night shift with Emileigh. So, I guess I will start from the beginning.
My pregnancy was perfect. I battled morning sickness for the first half of my pregnancy and honestly that was the worst part. Other than that I did get a bad cough when I was 10 weeks pregnant and was put on steroids. That was pretty miserable but overall the 40 weeks was what I had expected. Easy peasy!
Emileigh was due on September 24th. That day passed. My next appointment was on September 26th. I was really hoping they would induce me because that was our second wedding anniversary... aaand if labor went into the next day that would be fine too because that was my 26th birthday! I really wanted my baby on my birthday! But anywhoo... So on September 29th I went into the doctor's and they decided to induce. I called my husband and my mom and they passed the word along. A few hours later they were there and the pitocin began. Ouchie! Wasn't long after I asked for an epidural.
I progressed quickly and around 8pm (can't quite remember I was really drugged) the doc came in and kept trying to turn the baby so I could push. Welp, that didn't work. And I was having so much pain (with the epidural) on my tailbone that I asked for more meds. I'm pretty sure I told my husband at some point that he better watch out because I was convinced my tailbone was going to pop right out of my butt and impale him. So, then the doc sat up by me and said "well, there's only one way this baby is coming out." I said "c-section?" She said "yep." I'm a pretty laid back individual so I said "okay." She couldn't believe how easy that was. I just figured that's how it was supposed to be. So I was prepped for surgery, Jacob went out to update our families in the waiting room and then met me back in the OR.
Now we didn't know what we were having so the doctor had decided she would tell Jacob when to get the camera ready and then she would hold the baby up and Jacob could tell me what it was. I could feel pressure and hear everything but I was more concerned about vomiting because I was so nauseous from being on my back. Still, though, pretty easy peasy. Then the doc asked if Dad was ready and Jacob stood up and watched. I could feel when the baby was out but didn't hear any crying. And Jacob hadn't told me what it was. The baby was purple from the cord being around it's neck. So Jacob was looking but thinking "oh crap, it's purple!" Then he said "uh, it's a girl!" Emileigh cried and they took her behind me and Jacob followed. It seemed like forever before I got to see her. Maybe 15 minutes or so. Then Jacob walked her over.
She was so cute. She looked like Jacob's family. She looked just like him. She had her Uncle Sammy's lips. Once I was moved back onto my bed they handed her to me and we headed back to our room.
The first indication of something not being right was that ride back to our room. She was doing this repetitive eye movement from right to left. I figured maybe it was because she was out in the bright lights of the hallway. No biggie, but odd.
Once we were back in our room everyone came in. I remember holding her and she was arching and screaming so bad that I thought to myself "what did I do?" And "can I do this?" But again I had heard so many moms tell me that they had the same feeling. So, again, no biggie.
Later we settled in once everyone left and she was taken to the nursery. There they noticed some weird body movements and had someone from the NICU come up and evaluate her. They all came back in our room and reassured us she just had an exaggerated startle reflex. Good. The next day was just pumping, diapers and trying to feed her. She was not interested at all. The nurses weren't too worried. Later that night they asked if we wanted a break and we sent her to the nursery again. Little did we know that was the last time she would be in our room with us.
They called us less than 24 hours after she had been born and informed us that they were sending her to the NICU. We went down there and she had a lamp on her and IV. She was sleeping good but it was just not what I wanted to see. But I was positive that she was just having a rough start. Rounds were the next morning at 8. So we went back up to our room and slept a little and came back down the following morning.
The next morning we were informed she had a partially collapsed lung due to fluid from the c-section. But they weren't too concerned about that. The exaggerated startle reflex and some seizure-like movements were their main concerns. They ordered a CT scan and spinal tap. The spinal tap showed a larger than normal amount of white blood cells in the fluid. They sent some cultures out to be tested. The CT scan showed some grey areas in her brain and they said within her first year we would need to have an MRI at Children's just to follow up. Again, they were not concerned about that either.
The next day someone came over from Children's to perform and EEG to look for seizures. She was hooked up for an hour and later that night we were informed she was being transported by ambulance to Children's. We rushed downstairs to see her before she left and I had to rush to be discharged. My mom, in-laws and younger brother-in-law were all in our room. We all hurried up and followed shortly.
My mother's sister works at Children's and met us there. Jacob and I were in her room as soon as we got there. We had to go over family medical history, insurance, and a list of people that were allowed to visit her unaccompanied by us. Only 4 people are allowed in her room at a time, including Jacob and I. So eventually I became sick of answering questions and made my way out so others could go back and see her.
Honestly the days ran together while we were in there. She fussed more at night, wouldn't eat, was hooked up to all kids of crap (that I can still hear beeping) and we had constant traffic in and out of our room. She had a 24 hour EEG (which later showed no seizures) but was on anti-seizure meds as a precaution. Jacob eventually got her to take half an ounce of formula. So I tried breastfeeding and she was a pro the first two times, then she couldn't get it together. That same day they decided to do and unsedated MRI. Later that night it would all come together.
The neurologists came in after we came back from eating and my mom was in the room with us. They told us she had a condition called Polymicrogyria. Essentially she had too many folds in her brain. At this point in the explanation I knew this was bad and I felt the tears coming. They continued and said she will be disabled and may never walk or talk. Bam. There it is. I started crying uncontrollably (and I am not a crier and usually can control myself). My mom asked some questions, not sure what, but they said we would only find out more as she got older and as she reaches (or does not reach) her milestones. "Only time will tell." I fucking hate that phrase. I can still hear it coming out of his mouth.
So that was that. My mom left so we could be alone and we cried some more. I remember saying that I would do it all again if I had to and that we are lucky. So many people can't have babies and we are lucky we could have our own. But at the same time you feel so awful for creating this child who is going to struggle her whole life. Then you feel bad for feeling awful because she is the one who should feel bad and be pissed at the world. Then you go numb.
We were in the hospital a few more days waiting for the cultures from her spinal tap to come back and trying to get her to eat good. When she was a week old we came home. I remember coming home and I really thought it was just going to be OT, PT, speech therapy and learning difficulties all down the road. I had no clue all the other crap that was about to come our way the next few months.
And I'll have to save that for another post.
Thanks for sharing your story Cassie. You are in my prayers
ReplyDeleteCassie - thank you for sharing your story. I pray for your family every day and hope you are doing well.
ReplyDeleteI remember hugging you as we were crying and telling you that we will get through this, you are not alone, and she will leave her mark on this world but it will be in a different way.
ReplyDeleteHer small accomplishments are things most people take for granted but we will celebrate them as if she just won the most important race of her life!
Love, hugs, and kisses to you Jake and Emileigh.
Mom
Cassie, I too pray for Emileigh, you, Jake, and your extended family everyday in my prayers. Be assured that God is watching, and will provide for you and your family what is needed. Take care, and God bless all of you.
ReplyDeletePeggy Wolfram
Cassie - My name is Mel and my 2 y.o. son, Luke, has PMG. I hope you are all set up with your therapies. I also hate 'only time will tell'! Ugh. But unfortunately it's true. I just found your blog. I love your honesty! I think sometimes it's hard to tell how you are really feeling about some of this stuff! I look forward to hearing more of Emileigh's story!
ReplyDeleteThanks everyone! I am trying to find a healthy way of expressing my feelings and being "positive" but at the same time I want to show everyone the realness of our situation, make connections, and document our journey. Thank you for your support and I am grateful to have so many positive people in my life.
ReplyDelete