Learning About Gwen's Limb Difference
We found out that Gwendolyn was going to be born with a limb difference at the 20-week ultrasound in the middle of 2020. After that, there were multiple ultrasounds until Gwen was born, but we really did not learn much more than the first ultrasound, which showed that she did not have fibulas or feet on both legs. Really, the questions you want answers to as a parent after getting this news are: will she be okay? And will she be able to walk?
Gwen was born in November 2020, and hospitals were still in the middle of COVID protocols, which meant no one was able to come visit. The hospital did lots of tests and checked her heart. We ended up staying an extra day at the hospital, but she was a healthy baby.
First Surgery at 9 Months
Gwendolyn had her first surgery in August 2021 at 9 months old. Hospitals were still under COVID protocols, which meant Gwen had to get multiple COVID tests during this time, which was not fun. For the first surgery, Gwen had an amputation on her right leg and plastic surgery on her left leg. The surgery went well with no issues.
Gwen after her first surgery
Gwen had two soft bandages on both legs which she had to wear for a few weeks before our follow-up appointment to have them removed. Gwen's surgery was in the morning and we had her home in the afternoon. She was a little sleepy but she was smiling and acting like herself. The next morning when she woke up, the wrap on her left leg fell off. We did our best to tape it back onto her leg with band-aids until the hospital opened to get it re-wrapped.
When all else fails, sometimes you need a "band-aid fix" literally!
Recovery and Keeping Her Still
They told us to try and keep her as still as we could while she healed and to keep her bandages on, but keeping a 9-month-old still is pretty much impossible. Up until this point, Gwen had no screen time, but we started breaking that rule and found that watching The Price is Right really kept her still. The lights, the wheel, Drew Carey's jokes were gold to a 9-month-old and really helped.
Another thing that helped was experimenting with clothing to help hold the bandages on. We found some leg warmers that would go over the wraps and further up her leg, which helped. Keeping her in sleepers all day was also a huge help in keeping her bandages secure.
Leg warmers became our secret weapon for keeping bandages in place
Complications and Second Surgery
After a couple of weeks or so, we noticed her wraps were causing a sore on her skin. We took her in to have her surgeon re-wrap her legs. He removed the right wrap first and it was healing really well, there was no need to keep it in bandages. Unfortunately, when unwrapping the left leg, it was not healing as expected.
Healing complications that required additional care
Over the next few weeks, we had to re-bandage her left leg daily and put ointment on her wound. They were thinking the dead tissue would fall off or possibly heal on its own, but it did not, so they scheduled a second surgery to remove it. The second surgery went well, and they hooked her up to a wound vacuum, which is a small battery-powered vacuum that has a tube taped to Gwen's leg.
Life with the Wound Vacuum
Again, we had to try and keep her still to not rip this tube off her leg, and she was literally chained to a vacuum at this point, night and day. Each night we had to charge the wound vac. So in her crib, she had medical tubing tied to her leg, the vacuum sitting in the corner of her crib plugged into a power cord. As parents, it's baked into your brain: nothing in the crib, sleeping on her back, so this led to some stressful nights.
The wound vacuum setup
The hospital does not really give many helpful tips on how to have a baby sleep in this setup. We ended up being able to put the vacuum in the corner of her crib and thread the power cord through the bars so that one cord was not much of an issue. The medical tubing that went from the vacuum to her leg, we put as much of it as we could into the bottom of her sleep sack. The goal was to try and keep her from rolling over and getting tangled up in it. It did work, at least for us, we did not have any issues. We also had a baby monitor that would monitor her breathing in real time and set off an alarm if she stopped breathing. We set up a laptop in our bedroom with the baby monitor feed and breathing graph up.
Our bedroom setup monitoring Gwen's breathing through the night
Creative Solutions for Daily Life
During this time, she only had her left leg bandaged and it was still very hot outside. We were keeping her in sleep-and-play pajamas most days, so we modified some to make them short sleeve and cut off one of the legs. This also helped by routing the wound vacuum tube up her left leg and down her right leg, which was now cut off like shorts. When she was crawling around, the tubing was now putting force on the sleep-and-play instead of pulling on the tape on her leg.
Sometimes parenting requires creative tailoring solutions
Successful Recovery
Gwen wore the wound vac for a few weeks. We went into the hospital about once a week and they changed her bandages, checked her wound, and hooked the wound vac back up. During this time, we read a lot of books and watched The Price is Right to try and keep her from moving around too much or trying to stand up on the ends of her nubs, which she really wanted to do. After a few weeks, her wound healed great, and she has not had to have any surgeries or issues since. We do have checkups yearly with her surgeon, and everything has been good since.
After she had healed from surgery, we started working on her first set of prosthetics. Learn more about Gwen's prosthetic journey here.
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