If you missed part 1 of our journey, it can be found here. Otherwise, let’s pick up where we left off…
After an utterly exhausting, emotional day and a half from diagnosis to surgery, we’re ready to get home. I love Johns Hopkins All Children’s Hospital in St. Pete! Over the years, we’ve had a few visits and the staff is always top notch, kind and caring.
My biggest issue is, we we’re given ANY information on how to handle baby girl in this new Spica cast. Yes, we were given general cast care guidelines but no specifics. How do you change her diaper? Are there any dos and don’ts when picking her up? How the heck do I nurse?! And it wasn’t until we got home that we realized how unprepared we were.
I’m not sure if the hospital or my orthopedic specialist should have given me more guidance, but I feel like someone really dropped the ball. So, if anyone out there is dealing with a Spica cast, hopefully some of the following tricks that worked for me, may also help you.
Disclaimer: Obviously, I am not an expert and you should always consult your pediatrician to ensure these methods are appropriate for you. Also, this post contains an affiliate link.
We’re attempting to leave the hospital. Not so fast; she doesn’t fit in the car seat! We assumed she wouldn’t fit in her infant carrier. We thought we were ahead of the game by bringing our four-year-old son’s extra convertible seat but her legs were still too wide. Now what?
We head back into the hospital looking for guidance. It turns out the hospital used to provide car seats specifically for Spica casts but they stopped about 6 months earlier due to a loss of grant. Now we’re on our own. A nurse recommended putting blankets under our little one’s bottom to prop her up high enough that her legs were over the side supports that were currently in her way; or for one of us to run out and purchase a booster seat since they don’t have side supports. We knew a booster wouldn’t work, she’s way below the weight minimum plus they’re typically not meant to be rear facing. While we knew the blankets weren’t a safe, long term option, they were currently our only option. Thankfully we do not live far from the hospital.
Our New Normal
We’re finally home and overwhelmed. I know there’s no user manual when you take a newborn baby home from the hospital but with this, I felt even more clueless. A quick Google search on hip dysplasia and you find more information on dogs than babies. I was fortunate that a childhood friend of my sister recently shared her daughter’s struggle with hip dysplasia. I messaged her on Facebook. She provided a few useful tips and a ton of support and positivity.
The car seat was one of our biggest struggles. As far as we could tell Spica cast specific seats existed but were virtually impossible to find. Our orthopedic specialist’s office had no information for us. The real champs were my pediatrician’s office (shout out to Northeast Pediatrics for being amazing! Always!). They searched and searched and checked in with us regularly to see if we made any progress. I reached out to another family friend who used to be involved in car seat safety and she worked her way through her contacts trying to help. Ultimately we ended up purchasing the Diono Radian RTX Convertible car seat because it had adjustable side supports.
We literally had to YouTube how to change baby girls diaper. Guess what? It’s a 3-step process: Poise incontinence pad, small diaper with sticky tabs pulled off shoved inside the cast (we used size 1), pull-up training pants over the outside of the cast (we used Huggies because they had the re-attachable sides, in 3T). You thought diapers were expensive, imaging essentially using 3 every diaper change! And I was basically the only person comfortable enough with the process to change her diaper the whole 16 weeks.
Next we had to figure out what she can actually wear. Holding her legs in a wide “V,” her cast went from just under her chest down to her ankles. Shorts, pants and leggings are out of the picture. Onesies, only if they were really large. A quick trip to Target and I came home with adorable dresses in hand. The other issue was pajamas. The majority of them zip these days. Those won’t work; her legs are too wide to get them on. I had to search for the kind that snap. As I went through my daughter’s drawers, making room for the new suitable clothes, it was sad packing up so many of her lovely outfits she will never get to wear. She went from wearing 3-month clothes to needed at least 9-months.
Nighttime comes and I lay my little one in her cradle in my room. Suddenly is 4:30am and I’m wide awake panicking. Should I have done anything special when putting her to sleep? I grab my phone, trying not to wake my husband and start searching the internet. I settle on putting 2 rolled up towels under her legs for additional support.
Day 2, I invest in, what turns out to be my saving grace for our time in the Spica cast, beanbag chairs. From recommendations, online, I swap out our cradle for a pack ‘n’ play. Inside it we put a traditional round beanbag chair covered tightly in a twin waterproof mattress cover and a sheet. Typically, a beanbag chair wouldn’t be advisable because of the smothering potential but in that cast, there wasn’t a risk of her rolling over. The chair is able to support her legs and keep her on an incline, like she prefers. We also have a second beanbag chair, that’s more of a regular chair shape, for our living room.
Also, because of the cast, I chose not to sleep train. I just didn’t feel like it was fair to let her cry it out while stuck in such a position. She can’t move around to get comfortable and self-soothe. And because of this I have now gone over 9 months without a decent night’s sleep. So very, very tired.
We were beyond fortunate that our little one was put in a waterproof cast. She was able to take regular baths which was needed, especially after a diaper blowout! Baths were a 2-person task though. My husband would hold her, rotate her to all different angles while I sprayed inside her cast with the handheld shower nozzle to make sure we got out all the icky bits. You know what I’m talking about…
The cast takes a long time to dry. The cast pamphlet said it should take 60 minutes. My experience showed, if left to air dry, it’d take around 2 – 2 ½ hours. Sometimes I’d use my hair dryer on the cool setting to move the process along. My tip: puppy pee-pee pads! I’d lay one on the beanbag chair, lay a towel down on top, and then fully wrap her in another towel. This prevented the beanbag chair from absorbing the water.
When baby girl was born, my son never had major issues with it. Obviously, it was an adjustment for all, but he never acted out in ways you often read about. He always loved his sister and showed her such affection. After she was put in the cast, this changed. She was so much more demanding of my time. Suddenly he was acting like a “baby” telling me to put her down and hold him or that he wanted to nurse! I made sure to give him my undivided attention whenever possible and lots of praise for doing “big boy” activities.
Life was impacted in ways I never would have imagined. We had to pack up the baby bath, swing, and rock ‘n play sleeper because she can no longer fit. Grocery shopping became an even larger chore than normal; I could only buy as much food as could fit into the basket of my stroller because she couldn’t fit in a normal shopping cart. Her 6 month shots were delayed because they did not have access to her legs. (No earrings yet!) Finger foods were delayed because she could not fit in a highchair.
Throughout our 16 weeks, she was put into a total of 3 casts. Each time she had to be put under anesthesia. For me, it never got easier. The hospital check in process became routine; we knew where to go and what to expect. Handing her off to the nurse sucked, every time. The wait was always nerve wrecking. I always just tried to keep in the back of my mind that all these struggles now will provide her with the most fulfilling life.
On a special note: thank you for the outpouring of love and support I experienced after sharing part 1 of Our Hip Dysplasia Journey. The kind words mean so much to me!
Come back in 2 weeks for the final installment of our Hip Dysplasia Journey – after the cast!