Recovering From Open Fetal Surgery
It’s been quite a while since the last update- but I’ve been very busy napping!
I’m 13 weeks post-op today, which means I am 36 weeks pregnant and have less than 7 days left until my scheduled C-Section!
Before birth I wanted to give an update on all things recovery, and share some of the highs and lows that we’ve been dealing with.
How’s Fetal Surgery Recovery going?
Baby girl’s had great progression and healing since the surgery, which is the most relieving feeling in the world.
Her brain malformation (Chiari II Malformation) has completely reversed, her ventricles are normal sized (meaning no hydrocephalus), and my uterus has healed well. We’re still unsure of her mobility restrictions, and the function of her bladder/bowels, but we will find those out shortly after birth! She does have one issue with her right foot/ankle that we won’t know the gravity of until after birth as well, but it should be able to be fixed completely without another surgery. They’re telling us it’s similar to club foot.
As of last week she weighs exactly 5lbs and is in the 17th percentile. She’s stayed between the 13th and 20th for most of the pregnancy so we are right on track.
She has hiccup episodes about 7 times a day, lasting about 15 minutes each, which drives me insane and wakes me up at night, but we’re told that means she has good lung function, so I am happy to deal with the weird, rhythmic sensation. She’s also remained in a head-down position since she was 18 weeks, with her perfect, sweet, adorable, teeny little feet terrorizing my ribcage all day and all night. I will miss that though, I think.
What’s Fetal Surgery Recovery Been Like?
I definitely wouldn’t say anything about this has been easy, but the recovery has been as smooth as it could have been for me. Big thanks to the CHOP team, the CHOP therapy team, Ronald McDonald House, my family and most importantly, my mom.
The Ronald McDonald House
The Ronald McDonald House has been incredible. The setup makes everything easy for us. There are shuttles to and from the hospital from 8am-11pm every day, food is always stocked from donations and they serve hot dinner 6 nights a week. Sometimes volunteers cook, sometimes there is catered food. We’ve also been ordering delivery quite a bit. They have a movie theater room, which we haven’t taken much advantage of, and cute sitting areas in the garden to get some fresh air. There is also a common kitchen space downstairs that can be used to make yourself meals.
The room we’re in has two queen beds and two TV’s, with a good amount of privacy since the bathroom separates them. One side of the room has a desk and a large window, and the other side has a built-in dresser for storage and mini-fridge so we can keep some snacks and drinks up here. The giant window next to my bed has been an honest lifesaver.
Fetal Surgery Post-Op Appointments
Every Tuesday we head over to the hospital for my check-ins with multiple doctors, and for my ultrasounds.
Each ultrasound they check her heart, her brain progress, umbilical cord, belly, bladder, the fluid levels, my hysterotomy site, placenta, and her leg/ankle/foot movements.
The midwives check in with how I am doing, and we usually meet with either the research team, genetic counselors, the social worker or therapist depending on what they put on my schedule.
I’ve been able to go from bedrest to “modified bed rest” meaning I’m allowed to walk for 15 minutes, once per day, on top of getting up to use the restroom and shower as much as I need. I’m also allowed to enjoy one low key activity every once in a while, like a pedicure or going to sit at a café, as long as it’s near the hospital.
Putting out too much energy is risky for both me and the baby, so I’ve been taking it very seriously to keep her cooking in there as long as possible.
Day-to-Day of Open Fetal Surgery Recovery
Lack of Independence
Since bedrest has been so strict, I’ve needed a caretaker every day, for almost everything. Especially at the beginning.
This is one part of recovery that I can imagine is incredibly difficult for some people and should be considered when deciding if they want to have open fetal surgery.
It’s especially difficult once you start to heal and be able to walk, because despite your physical ability, you’re still not allowed.
Small tasks…walking to the mini fridge, or going down to heat your own leftovers, even standing up in the shower, really have to be limited and you have to choose how you use your time out of bed. I thought I’d struggle more with the lack of independence but it hasn’t been bad and the days go by really quick. It’s easy to let my mom take care of me and she is the best at it.
Honestly, what’s more shocking than the fact that I’m having a baby that’ll be born twice, is that my mom and I haven’t caused each other to go crazy after being together 24/7 for 13 weeks. It’s very helpful that we have the same sense of humor, taste in TV, and hate dealing with high-energy early mornings. I probably haven’t spent this much time with her since I was a baby and it’s been really special. I can’t even think about what it will be like now without her around, cleaning up after me and taking care of me allll the time. I’m going from full daughter mode- to full mom mode…quickly.
While we’ve been here, Jared has still had to take care of everything at home, working and caring for the dogs, and also had to have spinal surgery of his own.
He comes to visit as often as he can and join for doctors appointments. He was here for the surgery and will be here for the scheduled C-Section as well as our recovery time in the NICU. It’s so nice when he’s able to be here and it makes everything feel a little more real. He’s so excited and every time he comes up loves getting to feel the baby move, since she wasn’t moving too much before we got the surgery and he’s had to miss out on that.
Keeping Busy
The question everybody asks: how are you staying busy?!
I knew that I’d be good with not getting bored during bedrest because I’m easily self-entertained. I can do “nothing” all day and still somehow feel busy.
The saying, “creative people need time to just sit around and do nothing” completely applies to me.
I’m surprisingly not watching as much TV as I thought I would. A few episodes a day. Mostly Bravo and musicals, as usual.
I’ve read a few great books, taken about 100 naps, googled everything under the sun about how to be a parent, spent hours poking my stomach to play with the baby, and have sky-rocketed my average screen time on TikTok. My wandering mind alone could happily keep me occupied for hours.
The Viral Tiktok
When I was first trying to find information on our diagnosis and the surgery I went to TikTok to see the stories parents were sharing about spina bifida and the surgery.
I didn’t see too much about fetal surgery, which isn’t surprising considering how rare it is.
One day I decided to take a video I recorded of my pregnant tummy from a week earlier and make a TikTok out of it about my “twice born baby”. It really took off. With over 6.5 million views now, that one video alone has kept me plenty busy.
Because of the video, I’ve now been interviewed for articles in publications such as Business Insider, NY Post, Buzzfeed, The Sun. Our story has been covered in about 40 different publications around the world.
Over the past few weeks I’ve been plenty occupied with the questions that viewers have been asking me. It’s very cool to be able to get the attention and use it to spread awareness for spina bifida and the surgery itself. Before I give birth I plan on going back on TikTok to record answers to some of the most asked questions. I’m running out of time to procrastinate!
The Highs and Lows of Open Fetal Surgery Recovery
The Lows
If you’re reading this and considering fetal surgery, or have had fetal surgery, and you are feeling sad about missing out on…
a baby shower
baby store shopping
maternity photos and clothes
being around family
the comfort of your own home
an unmedicated, natural pregnancy
having a birth plan
sleeping in your own bed
setting up a nursery and nesting
…don’t be hard on yourself for feeling that way. There are alternatives, but nothing is quite the same as the experience you would have had with a normal pregnancy, so being upset about all of it is only human. You grieve the pregnancy and joy that you were having before you got the diagnosis, you can’t help it. With every bit of sadness though, there is a whole lot of relief.
Sometimes it gets hard when I feel sad about the things that I’ve been missing out on because I’m truly so grateful that I was able to do this for my daughter and had so much help from my family and the doctors/healthcare team. Whenever I do start to get sad about missing out on the normal, healthy pregnancy I thought I was having, it’s pretty easy and natural to snap out of it when I realize what me and her are both able to get out of this, which is a lot of strength.
The Highs
The biggest positive of this whole situation though is knowing how well she is being looked after. Getting weekly ultrasounds from the best medical teams in the country, knowing how she is doing every step of the way, and knowing your whole family is in great hands, is an incredible comfort. You learn more about your pregnancy than you ever would have known.
Plus, you are doing every single thing that you can for your baby. Nothing is more worth it.
Side note: This surgery is not for every family, every baby, mom, or every case. If you choose the fetoscopic surgery or the post-birth closure, that doesn’t mean you aren’t doing every single thing that you can for your spina bifida baby. Any choice for your family is the correct, best one.
Time For Baby!
“Are You Ready?!”
Another question that’s asked every day as we get closer. “Are you ready?! Are you Excited?!”
Of course we’re ready to hold our baby and I am excited to get off of bed rest and my medications but… ready? I’m not so sure anybody ever is, right?
It’s been really hard for us to get set up or decide what to buy for the house since I haven’t been home to get anything ready. Jared has been great with getting it all done as much as possible. But, the fact that we don’t have a nursery, or clothes put away for her, or even a diaper station set fully set up, its weird. Really it’s no biggie, but definitely makes it feel less “real” that a baby will be here in a few days.
I just cannot wait to hold her and learn about who she is every day. I am excited to listen to her little noises and smell her, I am excited for family and friends to see her and tell us who they think she looks like, all of those small things make me wish she was already here.
What I am not looking forward to? Another surgery. The NICU. The medical unknowns and decisions that we’re going to have to make. The crazy crazy hormones.
PPD has always been a huge fear of mine, especially with my history of anxiety and depression, so seeing a psychiatrist and therapist, and balancing my medications throughout this whole situation has helped me feel more prepared for the possibility of that happening.
I’ve gotten pretty good at taking one step at a time, so ready or not, that’s the mindset we’re going with.
The “Birth Plan”
The day before I give birth (which is my own birthday), I’ll go into the hospital for all of my pre-op appointments. They’ll do the last ultrasound to measure the baby and make sure everything is looking good, do the routine blood work, allow me to ask any questions, and go over the procedure.
At 6am on October 5th I’m be scheduled to get to the hospital for the C-section that’ll be performed just a few hours later. My dad and Jared will be there with me.
They’re going to use a spinal block instead of an epidural as they did last time. I will also be awake, unlike the last surgery. The same scar on my stomach will be used for the C-section, which is higher up and larger than a typical C-section scar. However, they’ll be making a new incision on my uterus to get to the baby at the bottom of the uterus. When they’re in there, after they’ve taken the baby out they will also fix the scar from the last surgery, so it’s a little more in depth than a typical Cesarean.
From what I understand from the plan the doctors have discussed with us, the baby will immediately be taken into another room to be checked out instead of doing skin-to-skin. Within an hour Jared should be able to go in to see her and from there she will be taken to the NICU, and Jared can stay with her as they set her up.
After I’m finished with surgery and the baby is set up, if all goes as planned, I’ll be able to see and hold her. They told me 2-3 hours later.
I have a feeling that 2-3 hours is going to be complete torture, feeling like my baby has been taken away from me, but at least she will be with her dad.
Days in the NICU
They plan on having me in the hospital for 3-4 days after surgery, which I believe is consistent with a routine C-section. The big difference for me is that she’ll be in the NICU and not in the room with me, but as long as we are feeling good I will be able to be in there with her as much as possible to hold her and feed.
We aren’t sure how long she will be in the NICU for, which makes planning feel crazy, but one step at time.
They said the average stay in the NICU is 10-14 days for these babies. The quickest they’ve discharged a baby was 4 days but we opted her into some research studies to help understand more about Spina Bifida, so she will go through sleep tests, and in order for her to be cleared to fly home on an airplane so young she will need to pass some more specific tests.
Boundaries I'm Preparing For
Health
Since we’ve gone through so much this pregnancy, I feel like I am going to be an extra protective mama. It’s a scary time of year to have a newborn, with covid, RSV, and the flu all around us. We’ve also been warned about the dangers of whooping cough, especially for NICU babies and although being born at 37 weeks makes her a full-term baby, there is still 3 weeks that she didn’t have to allow her lungs to strengthen.
All care takers and those who will be close to the baby on a regular basis for the first 6 months I’ve asked to be vaccinated. We’ll also be super cautious about mask-wearing while holding her, as well as no kissing the baby being allowed at all. We didn’t go through all that we have been through to get her sick again, I don’t think I could handle it!
Social Media
For now, we’ll be using the platform called “Family Album” to share the majority of photos of our baby with family and friends who are invited to the album. I will also post some on my blog here.
From working in the behind-the-scenes of the tech world and studying social media apps specifically I just won’t feel comfortable sharing too many photos of the baby and her progress publicly. I’ll post stories, and occasional posts on the social media sites that I use without sharing too much.
If you’re interested in the cons of posting about your children too often on social media, please let me know and I would be very happy to discuss!
Bringing Baby Home!
Most people are nervous just driving their baby home from the hospital. I’m in for a whole new experience of stress with this situation.
We’re going to have to get from the Ronald McDonald House to the airport, fly home with the baby and months worth of our luggage, and then somebody will drive us home from there. I haven’t been home since mid-June or seen my dogs. Saying I am excited to get settled would be a massive understatement.
We’ve gotten some advice on how to make this easier and I certainly will post an update on how it goes, but wish us luck! I will be happy to take any advice on this subject!
Next time you hear from me, my name will be Mama!
Can’t wait to tell you all about it xoxo
