Our NICU Graduation
Hello Scottie!
First thing’s first, thank you all for every ounce of support, love, prayer, generosity and the gifts that have been sent our way. There are no words to describe how grateful we are, and that’s a huge part of why the surgery was so successful for our family. Thank you, thank you, thank you. Thank you.
It’s been a looong time since our last update and our whole world’s changed in almost every way, so we have a lot to catch up on here!
Most importantly, we have a healthy, beautiful, perfect, sweet baby girl. Scottie Rose Dufault Schumer.
Today I want to give an update on her health from the day after birth, to her NICU graduation and how our “going home” plans drastically changed.
Recap
Since there’s been a lot going on, here’s a quick timeline of the pregnancy that brought our strong girl into the world.
February 13: Found out I was pregnant again after the loss of our first pregnancy (5 weeks pregnant)
May 25: Received our Spina Bifida Diagnosis (18 weeks pregnant)
June 20: Went to Philadelphia for Open Fetal Surgery consultation (21 weeks pregnant)
June 29: Moved to Philadelphia for Open Fetal Surgery (23 weeks pregnant)
July 3-October 1: Bedrest at RMH in Philly (23-36 weeks pregnant)
October 1: Scottie is born! (36 weeks pregnant)
October 1-19: Discharged from hospital
The Quickest C-Section Recovery
Since the day I had open fetal surgery, the nurses assured me that having a C-Section would now feel like a breeze. I 100% did not believe them, because who has ever said that before? Nobody. But they were right. The recovery was so much easier. Not needing an epidural or catheter for the days following, no magnesium, being able to walk much sooner, and the desire to rush down to the NICU to see my baby rather than dreading movement. It was so different.
The morning after my C-Section I could not get down to the NICU fast enough to officially meet and hold my daughter. I got to see her as they were finishing the C-section but there was so much going on, no skin-to-skin. As special as it was, it wasn’t intimate and didn’t feel official yet.
Surgery finished around 1am. The nurses had to make sure that I got enough sleep and had to check in on my vitals, my meds, and make sure that I pumped, so I was able to get down there around 9am to see her.
I was feeling pretty good, already had an appetite and had decided to forego any narcotics and just take Motrin and Tylenol for recovery. I learned during my fetal surgery that I do not handle pain medication well (TKO), and with her being in the NICU, unsure of how she was doing, I was afraid that I’d need to be alert enough to make decisions and take in information.
I was wheelchaired down to the NICU and got to hold my baby for the first time. By the time that I got down there, Jared had already visited her and got to give her a feeding and speak to the doctors. She was amazing.
I was so exhausted I barely remember this moment to be honest. But we got to do some skin-to-skin and let her latch for a little while. Shortly after I had to take a break because I was afraid I wouldn’t be able to keep my eyes open.
In the NICU
During the time between surgeries, the part that I dreaded the most was the NICU. I cried any time I even thought about it. The thought of her being taken away from me after the birth, her being so far away from me at night, the lack of normalcy and intimacy, it was the most anxiety inducing piece of the chaotic pie that was my pregnancy.
When the time came, and she was wheeled out of the OR, it didn’t necessarily feel right, but it didn’t feel wrong. It wasn’t as bad as I thought it would be because I was just so happy that she was in the world and happy that Jared got to be with her everywhere she went.
We didn’t do a NICU tour during my time on bed rest like the patients usually do, so I didn’t know what to expect and I ended up being glad that we skipped it.
I don’t think it would’ve made me feel better because from my experience, the NICU was a very grim place. Dark, cold, and filled with tension. No windows, and (as it should be) very limited visitors.
However, the staff was 10/10 incredible. So attentive, so caring and kind, SO smart and reassuring. If we had to be anywhere for a birth experience like this, I knew CHOP was right place.
I’ve never been more exhausted and excited at the same time. But I really didn’t know what to expect. There were so many unknowns that were about to be answered. She was (and still is) so perfect. There were a lot of doctors that still had to come by and see her, but she was doing great. Far better than we expected. Full movement in her legs down to her toes, emptying her bladder on her own, eating well, latching right away.
Aside from the immense wave of love that we felt, words could absolutely never explain the relief and gratitude that we had knowing that the surgery was the right decision.
My dad and mom both came down to visit us and meet their granddaughter. There are only 2 registered visitors + parents allowed to rotate in and out of the NICU to be with the baby, and only 2 visitors total allowed at a time. So we would rotate, get rest, get some food, ect. I was still inpatient at the hospital myself for my surgery so I had to keep going to my room to get my meds and vitals, and pump. My colostrum wasn’t coming in too fast since I had a C-section at 36 weeks, so we gave the team permission to give her donor breast milk, which we were also very grateful for.
Moving On Up
We were told the average NICU stay for a baby with a fetal MMC closure is 7-10 days and 4 days was the quickest, so that is what we expected. On day 2, October 3rd, they told us that she was ready to leave the NICU and move to the transitional care unit.
5pm that night they had a room ready for us and it was an incredible change. We were lucky enough to get 1 of the 3 private rooms. Where I could sleep in the room with her, we could have all 4 visitors in there together, we could eat in there, spend all our time there, and that is exactly what we did. All day every day I got to hold my baby, which is something that I did not expect to be able to do for a while.
October 4th was my birthday, and my discharge day from the Special Delivery Unit, and my gift to myself was that nobody else was allowed to hold her, I hogged her for the entire day and loved it. We ordered sushi that I had been waiting for the whole 9 months. (I had already eaten deli meat about 3 times by then.) Since I was personally discharged, this was also the first night that I was able to spend in the room with Scottie alone, while Jared went back to the Ronald McDonald House to get some rest.
The whole time that we were in the transitional care unit there was doctors in and out. So many of them, so many teams of them. We saw the neuro team, neo-natal team, orthopedic, speech therapy, physical therapy, lactation, pulmonary, endocrinology, all on top of the routine care done by the nurses every few hours.
Overwhelming would definitely be the word to describe it, but we didn’t mind because every team and every doctor that was coming in to evaluate her was giving us more and more good news. She was healthy, she was being treated as a “normal” (hate that term) pediatric care patient instead of a spina bifida patient. The neurosurgeon who performed her surgery told us,
“Scottie has received the maximum result of every benefit that the surgery could have provided.”
Tears.
We are so lucky. Not every patient receives every benefit, and not every patient receives the maximum result of the benefits that the surgery can provide. We certainly did not expect that. I don’t want to say that we were negative approaching the birth, but we were bracing ourselves for at least some sort of “complication” or symptom of spina bifida. After all that we’d been through, how could we not?
This isn’t to say that there won’t be symptoms or issues that will come up in the future, there’s still the possibility for some complications ahead of us, but we are so grateful for this surgery and to have a completely healthy baby.
With that being said, it wasn’t ALL easy.
Some Mild Turbulence
We did have some very traumatic nights in the hospital with ups and downs, low oxygen, hypothermia, sleep apnea, not eating, invasive procedures, blood being drawn.
She ended up being diagnosed with “severe obstructive sleep apnea” during a clinical research sleep study that we signed her up for one night. That night was incredibly traumatic for me as she got sick while doing the sleep study for seperate reasons and was hooked up to so many machines, and so many doctors coming in and out. I could not hold myself together.
Overall the experience just made me feel so grateful that what we were dealing with in that moment was temporary, because there were so many other patients and families in the same ward of the hospital dealing with much, much worse.
This resulted in another week being spent in the hospital, another sleep study, and being sent home with an oxygen monitor and oxygen to be on since hers was not stable. They told us they hope that she grows out of this around 4 months old but cannot tell us for certain yet.
Besides the sleep apnea, the other complications we have to keep an eye on her tethered spinal cord, and weakness in one of her legs. They will always keep an eye out for any changes in her brain and her nerves and bladder/bowels, but for now its all great news.
The oxygen situation is what changed our “going home” plans, which changed basically our entire lives even further than the week already had.
Going “Home”
Why is “home” in quotations? Because one day, within one hour and one meeting with our doctors, home became a subjective term for us and was no longer a place.
When discharge time came around, a few weeks after she was born, the team agreed that we would be cleared to go as long as she was on oxygen at home and that we were set up with a local spina bifida clinic. This is where some things started to change for us logistically.
Our original plan was to leave the hospital and go back to our house in Florida.
We were going to go to the hospital in Orlando, which is about 3 hours from our house in Boynton Beach. We would also have to visit some doctors in Miami, which was 1.5 hours in the other direction. Then when the time was right we planned on moving to Rhode Island, hopefully within the year.
The oxygen created problems for us, though. We would not be able to fly home with her and were also not able to drive that far (26 hours of driving). It would also add more doctors to our care team and would be difficult for us to transfer care through 3 hospital systems instead of 2. The logistics with oxygen tanks became very difficult.
With just one hour to make a decision, we agreed that Scottie and I would move to Rhode Island and move in with my mom. Jared would stay in Florida to continue work and come up to visit when he could. And we would try to sell our house in Florida and buy another one in Rhode Island. Our whole lives flipped and we spent the whole day on the phone trying to set up new arrangements.
This was so hard. From the time that I went to Philly in June to get my consultation for the surgery, I found out I only had one day, 22 hours, to go back home and pack up for the next few months to be on bed rest in Philly. I think that I was in shock, and maybe still am, that those 22 hours would be the last 22 hours that I would ever be living in Florida, or would ever be in that home that we made. I had no idea, and no closure to the past 11 years I spent there, grew up there.
Life Lately
Currently I am still living with my mom in Rhode Island, Jared has been coming up for about 10 days per month to visit us and be with Scottie, we’ve rented out our house in Florida and bought a new one in Rhode Island and are in the process of getting it ready to move in.
Scottie is doing great. We had some issues with her weight in the beginning but things are starting to get back on track. Breastfeeding is HARD. Much less intuitive than many would think.
We have a visiting nurse checking up on her at the house once a week, we will be starting with Early Intervention (hopefully soon), and we’ve been visiting Boston Children’s hospital for our primary and specialized care.
Hot take and personal opinion now that I have perspective as a mom: I feel like somebody has to say it. If you find yourself wanting to ask the seemingly harmless questions to a mom like “are you breastfeeding?” “is she getting breastmilk or formula?” or anything of the sort about how mom is feeding. Please don’t. It is so hard figuring out breastfeeding and formula and its a very personal experience that can be so so triggering. If the baby is having weight issues, it weighs heavy on the mom. It’s very uncomfortable to be asked about it and I never knew that until I experienced it.
Quick Update on Another Subject: Selffy
If you don’t know, since 2020 I’ve been working on building a startup, Selffy. I haven’t talked about this for a while and want to give a small update.
Things were going really really great for Selffy in the first half of 2022. Unfortunately, I found out about some complications we were about to run into the same week that we got our diagnosis for the baby. What the company is dealing with is definitely resolvable but the setbacks and diagnosis happened at a time where we could afford to slow down for a bit until Selffy could get the attention that it deserves. I am not happy about it, but still confident, and it was necessary.
What’s Next?
It feels like I’m finally able to take a breather. I’m basically a single mom for most of the time since Jared is living in Florida but it is great to have the support of family around, and living with my mom, stepdad and grandparents really helps. We’ve purchased a house in Rhode Island and rented our old one out in Florida, and we are starting fresh with a new life as parents. It’s taken me 3 months just to give an update so I don’t want to over extend myself by promising more content and updates but I would really like to make this more of a regular thing.
I have vlogged my pregnancy from diagnosis day- discharge day and would love to post a video all cut together, but first I have to learn how to do that so I am giving myself patience and grace on getting that done. I’d also love to share some posts about the products that I have been using to make the newborn stage easier for me, and updates on our home renovations.
If there is any updates or content that you would like to see please help me by letting me know! I would love some more ideas. Subscribe to my website to get emails for updates and new posts!
