Today, I’m sharing the whirlwind birth story of Eloise up until a few weeks after her birth. I’ll be sharing more about her diagnosis in the next post.
I took some time off from the blog after little Eloise was born on 9/16/19. I didn’t intend it to be THIS long.
But, it’s been the worst couple months of my life for reasons I’ll get into in this post and in a subsequent post about her diagnosis.
In summary, she has a genetic condition called Aicardi Syndrome and has a relatively poor prognosis. I say “relatively” because we have no.freakin.clue.
Let’s back up and start from the beginning…
Everything was going well during the pregnancy. I did the genetic screening tests in the first trimester and everything came back normal. We found out she was a girl from the genetic testing and were thrilled. How amazing – we would have 2 boys and 2 girls. The perfect family.
We went to our anatomy scan like we were old pros. I told TJ he didn’t even have to come. We joked with the ultrasound tech and loved checking out our little girl squirm around.
When she got to scanning the brain, the ultrasound tech stopped talking and started acting weird. I immediately panicked and asked if everything was ok. She kept dodging questions and just saying “yeah yeah”.
I JUST KNEW something was wrong.
Even TJ who normally tells me to calm the f down felt uneasy.
The next day, I got a call from my OB saying she had something called Dandy-Walker syndrome. Or, they suspected it. They couldn’t get a good look at some structures in her brain and said we should have another ultrasound just to be sure.
Well, I totally freaked out and said I couldn’t wait and we needed to figure this out right away.
We met with the high risk doctors and had a more in-depth ultrasound done. The doctors there said they thought she had “normal brain anatomy” and could visualize all major structures and everything was within normal limits. However, because the question was raised of there being an abnormality, they suggested with have a fetal MRI done.
Now, I know this is a touchy subject and people have very strong opinions on both sides. But, in the interest of transparency, I want to convey all thoughts we (TJ AND I) had at this time in the hope that someone reading this faced with what we were facing, can feel like they are understood. And that’s not to say that everyone would feel this way. Or that anyone at all would feel this way.
If the baby did have this Dandy-Walker Syndrome, I wanted to have an abortion. I believed, and still do believe, that I am not cut out for this life of having a child with complex medical needs. I did not want that life.
Do I feel like a shitty, selfish person for having these thoughts? Yes. Do I think about that often when I look at Ellie now? Yes. Do I regret having those feelings? No.
We went on to have the fetal MRI done. I cried the whole time. I cried to the tech begging her to give me the results. But, we had to wait an agonizingly long amount of time to get the results. During this period, I couldn’t do anything. I couldn’t play with my kids. I couldn’t cook dinner. Basically, I was a shell of a person. It was a horrible week.
Then, we got the call that they had the results. The high risk doctor said that she definitively did not have Dandy-Walker Syndrome. But, they noticed some abnormalities that could be totally normal given her gestational age. At worst, she could have seizures as an adolescent but lead an otherwise normal life.
They offered to do genetic testing and another fetal MRI when I was farther along. We declined all of this. I needed to put this behind us so we could enjoy the last few months of this pregnancy.
You can imagine that relief we felt after getting these results. Seizures as an adolescent was something I could handle, if that was even the case.
The pregnancy progressed otherwise normal after this. From the outside.
After 30 weeks or so, I started feeling her making strange movements. I had 3 children before her and never felt something quite like it. It truly felt like she was having seizures in my stomach. I thought for sure I was crazy. I do tend to be a worrier, especially when it comes to my children. So, I chalked it up to paranoia.
I tried to remember every last movement I felt of her in my stomach. We knew this was our last baby. I had alway told TJ I needed to know when it was the last one so I could really savor each “last first”. So, the last first kick. The last first smile. If that makes sense. This has been one of the hardest things for me to grapple with right now – more on that in the next post though.
I was induced at 42 weeks like I am with every baby. These kids just do not come out of me willingly. She reminded me of Evie during labor. Moving CONSTANTLY. I really took it all in. All the pain and pressure. I wanted to remember it.
After a relatively easy 10 hour labor, Eloise was born on 9/16/19 at 3:01pm weighing in at 9lb 4oz.
She was pretty black and blue after birth. I only pushed for 30 seconds and they explained that her quick decent though the birth canal would result in some bruising and it was fine. She had high APGAR scores (I never remember the exact number for any kid!) and started nursing right away.
One of the first things I said to TJ was “why are her eyes so small” and I’m still haunted by that comment.
The epidural wore off and we were sent to our new room from labor and delivery. It was just TJ and I and we were both so tired. We took turns holding her and slept. Then, TJ went home to be with our other kids for the night and I stayed in the hospital with Ellie.
I sent Ellie to the nursery that night to sleep. We did that with Charlie and Evie and that sleep is SO needed. I tried to be a martyr with Liam and keep him with us the whole time. After he cried that entire first night and we got exactly zero minutes of sleep, we vowed to never do that again haha!
I feel so guilty for sending her to the nursery. The nurses brought her to me to nurse around midnight. She fed for FOREVER and I finally just called the nurses and said you gotta take her I need a minute. Ugh, I feel so gross even typing that out.
It had been a few hours and around 5am I called to the nurses station asking why they hadn’t brought her back to nurse. They said the nurse would be right down.
Well, the nurse came down and said they noticed her blue coloring (from the birth trauma) and tested her blood oxygenation (or pulseox) and she kept dipping down a little too low.
So, they called the NICU and they were going to take her down there to be evaluated.
They brought her to me and I sobbed uncontrollably. I thought I was having a panic attack. Why couldn’t I have just kept her in the room with me instead of being selfish and wanting to sleep? Maybe this would have never happened. After just a few minutes, they took her away to the NICU.
I was completely alone.
I called TJ who was asleep. You do NOT wake TJ from sleep or he turns into a lunatic. I told him he had to come down to the hospital right now and after I convinced him that was necessary (insert eye roll emoji) he agreed.
I had to have someone wheel me down to the NICU as I could not walk that far only 14 hours after birth and no one was there with me.
Never have I been in a NICU before and never do I want to be in one again. It is the MOST depressing place.
They did 20 billion tests. Everything was normal. They did notice a brain cyst but said it was benign. Maybe a skeletal abnormality but it’s probably nothing.
The next few days were a whirlwind.
I spent every second I could sitting next to her in the NICU. I was allowed to hold her and nurse her. She was never in any major distress. The nurses kept telling me to go back to my room and eat and sleep and shower but I didn’t want to. How could I leave this little baby who I had just spent 9 months growing?
TJ spent the day there with me. Eventually I did shower and eat. But tried to only stay away for an hour in case she wanted to nurse. TJ had to leave to be with our other kids and I was alone again.
I can’t describe to you the feeling of sleeping in your postpartum recovery room without your baby. Truly, I don’t have words to describe it.
I woke up overnight every 2 hours and walked to the NICU to nurse her. I still remember the walk. I’d say hi to the nurses at the nurses station. Turn right and out the doors. Took the elevators to the NICU floor. Turned right, then right again. Walked down the longest hallway ever. Got buzzed in two separate sets of doors to the NICU. Said hi to the NICU receptionist. Walked down and to the right again. Scrubbed in at the sinks. Then to her pod (where there were 5 other babies).
Eventually it was time for me to be discharged. Ellie still had to stay though. She had to go 48 hours without oxygen to be discharged. She was on the smallest amount of oxygen they could give her and doing totally fine (satting at 100% for you medical people) then as soon as they took the oxygen off would drop down to 89, 88. It was never horrible but not okay to go home, either.
TJ brought the kids down to see me. Liam brought me a ring he brought from his teacher’s store. He drew pictures for Ellie. He wrote her name as “L O Weez” since he didn’t know how to spell Eloise. I mean, phonetically it’s pretty good! My heart wanted to be home with them and I missed them so very much. But, leaving that hospital without Ellie was so hard. I couldn’t stop crying.
Every day TJ would drive me down to the hospital.
I’d walk to the NICU and spend all day with Ellie. I’d come out to get lunch with them or ice cream or something. My ankles were swollen so much I was actually in pain. We would come home and sleep in a room without Ellie.
The second night home, I woke up overnight with the worst stabbing pain in my uterus I had ever felt. It was worse than labor pain. I couldn’t breathe. I asked TJ to get me some ibuprofen and I rocked back and forth in pain on the bed. In reality, I should have gone to the ER but we didn’t want to call my parents who were already doing so much for us.
After about an hour, I was able to move from the fetal position to just laying flat on my back. If you even so much as breathed heavily on my stomach I was in excruciating pain.
That morning, I called my OB on call (it was a Sunday of course). She said it was probably normal but to come in Monday morning to be evaluated.
That same day, finally, after 75 years (or just 5 days), we got the call that Ellie could come home.
We packed up the kids and went to the hospital. The nightmare was finally over!
I don’t know how I made it through that day. I maxed out on ibuprofen and adrenaline because my baby was coming home! We would finally be the perfect family I had envisioned.
The next day I went in to the OB, they did an internal exam. Which, as you can imagine, after having just given birth is just about the worst thing ever. She said I had a uterine infection and prescribed an antibiotic.
I could barely move the next two days. As soon as the pain meds were wearing off, I had to take more immediately or I’d be crying on the couch in pain. And it wasn’t just pain in my uterus. Every inch of my body hurt. I couldn’t move my fingers or knees because my joints hurt. I couldn’t sit up quickly or my head would throb. One time, I was reading to my kids and Charlie set his hand on my stomach and pushed himself up. I SCREAMED in pain and scared all of them. It was horrible.
I went for a follow up appointment on Wednesday (2 days later). They performed another internal exam and tried convincing me that I was fine. Man, that experience is a whole other post.
I explained the level of pain I was in and was told it was normal (I had 3 children before and knew it wasn’t normal). I said I filled an entire maxi pad from walking from the parking garage to the office and was told it was normal (again, 3 children before and it is not normal a week after birth).
If I hadn’t advocated for myself and insisted they do further testing, I may have bled out and died.
The doctor begrudgingly agreed to have an internal ultrasound done to looks for retained placenta. She stormed out of the room as if I had personally offended her.
We went up to have the ultrasound done immediately (my doctor’s office is in the hospital). It’s an INTERNAL ultrasound probe. One week after giving birth. Ughhhh that still haunts me! I clutched the sides of the exam table to try not to move from the pain.
The tech called the doctor to have him look at the images. She told me “ok you’re good to go”.
So, I waddle out of the hospital convinced I’m going crazy. Was I actually in this much pain with my other kids? Am I just being a baby?
A few hours later I get a call from the OB office telling me I had retained products of conception in my uterus (aka retained placenta).
They asked me to come in right away to have a D&C done in the office. I told them I had been told I was “good to go” (and that’s verbatim) and I was at home, 45 minutes from the hospital on a good day. It was 4pm and the office was closing soon.
They said “okay just come back tomorrow morning at 9:15am”. In reality, it’s possible that I could have bled out in this time period. Maybe I should have asked if “good to go” meant good to leave the exam room but stay in the hospital or good to leave the hospital.
I still can’t believe how that whole situation went down.
Not surprisingly, I barely slept that night, waiting to start gushing blood and having to call an ambulance. I calculated how long it would take an ambulance to get to our house and then to the hospital and if I would survive.
The next day we went in for the D&C. It’s a painful procedure, but I was happy to have it done. I could have had it done under general anesthesia but then I would have had to stay in the hospital and blah blah blah. I just wanted it to be over with.
This doctor was so sweet and patient and kind. The whole thing took about 45 minutes with the worst parts being the numbing injections and the last sweep they do to clear products.
I heard the placenta piece being sucked out during the procedure and crushed up. It’s as disgusting as it sounds. If you need a D&C ever due to a miscarriage I would HIGHLY suggest being put under general anesthesia.
I thought I would feel immediately better after a few days or so. Like an immediate recovery.
Instead, it took nearly 3 months to completely recover. I lived on ibuprofen and Tylenol. I saw a specialist to be checked for rheumatoid arthritis because of the joint pain that just now (4 months later) doesn’t bother me every day.
My entire torso ached every day. I didn’t move from the couch.
And guys, we’re just getting started with this story.
At this point, we think everything is going to be okay. That the worst is over.
Then, I started noticing Ellie have strange, repetitive movements. I recorded it on video and sent it to friends and family. A visit to the pediatrician the next day confirmed my suspicions that it wasn’t just normal baby movements.
But, that’s a story for the next post.
If you made it through all 2877 words up until this point – THANK YOU! What a messy whirlwind that time was.
In 2 weeks, I’ll share the rest of Ellie’s story, the devastating diagnosis we’ve received, and what our life is like now.