In between my hormonal new mom crying fits, Audrey had several doctors appointments after her NICU stay; Pediatrician, NICU follow up, cardiologist and orthopedic. We were going to at least one appointment a week for the first couple months having her home, but by four months we managed to cross those appointments off our calendar one-by-one because she was doing so well. She only required a yearly visit with her cardiologist and no longer needed the NICU follow up. We were so happy she was continuing to do so well and crossing those weekly appointments off our calendar felt so good! Even though we were getting great news from her other doctors, there was still one doctor we hadn’t defeated yet.
**I’m just explaining my own personal experiences and what I’ve learned along the way. Nothing in this blog should be taken as professional medical advice.**
Because of the lack of amniotic fluid, Audrey was kind of stuck in one position when I was pregnant. It happened to be a not so great position developmentally for her bones. When she was born her left leg was shaped like a U in the opposite direction your leg is supposed to go. She was diagnosed with a severely dislocated knee, clubbed foot and bilateral hip dysplasia (worse on the left). Her dislocated knee and clubbed foot were mostly fixed by at home stretching exercises from her doctor and physical therapy. Her hip dysplasia was treated by a brace called a Pavlik Harness that she started wearing when she was only three weeks old. I’ve attached an image of what a Pavlik Harness looks like because it’s way too complicated to explain!
Photo courtesy: Tsortho Surgical
Hip dysplasia is when the acetabulum (the two dome shaped structures on either side of the pelvis where the hip joint is located) is more slanted or flat instead of a nice round dome shape. This causes the head of the femur (hip) to completely dislocate or slip out of place. The purpose of the Pavlik Harness is to put pressure on the soft baby bones and create that dome shaped acetabulum needed to seat the head of the femur in place. If this goes uncorrected, people can have several long term problems with their hips as they age and their bones start to calcify (harden). Correcting it as an infant is ideal because baby bones are still very pliable and it’s not painful for them. It’s actually a comfortable position for most babies, or at least it was for Audrey. Since I’m a visual person, I’ll give you a visual example of what’s happening. You know when you’re making those Christmas cookies with the Hersey’s kiss in the middle? When those cookies come out of the oven, think of the cookie as the acetabulum. As the cookie sits out (aging) it starts to harden, so you have to put that kiss on top at the right time or it won’t work, right? So, if you were to press a kiss into the cookie and then change your mind on the kiss flavor, when you pull the kiss back you’ll notice there is a round hole in the cookie. That’s essentially what the femur bone is doing to the acetabulum in the Pavlik Harness. It’s rounding out the dome shape necessary for the femur bone to function properly. Now, if you were to let that cookie harden and then try place the kiss on top of it you’d have a hard time getting it to stay in place because the cookie has started to harden. The kiss may even slide right off the cookie (hip dislocation). Obviously, you can’t eat those kind of cookies without the kiss on top because that’s just breaking cookie law. Same goes for hip dysplasia, you can’t let it go uncorrected because you’ll end up with worse problems later in life. Alrighty then, now that you’re all caught up on hip dysplasia… back to the story.
Audrey wore a Pavlik Harness for the first three months of her life. The harness only came off for bath time and car rides. She was in the harness for 23 hours a day for three months straight. When we finally got the harness off, we were all so excited! We thought we were done with the orthopedic, but someone had other plans. Audrey was out of the harness for about two months when at her follow up appointment her doctor noticed her left hip was completely dislocating. He said the only way to make sure this doesn’t keep happening is an outpatient procedure in the OR called a closed reduction with hip spica cast. Basically, under x-ray guidance, he put her hip back in place and injected a contrast material, that shows up on x-ray, to make sure the joint space and femur bone are looking normal. Then he would place a (almost) full body cast on her. The cast started at her chest and went all the down both legs to her toes. There was an opening where we could change her diaper but there was definitely a learning curve there. Audrey had two of these procedures done and was in a hip spica cast for a total of 12 weeks.
We always told ourselves “Ok, we made it through that part and we survived. What’s next?” We were always “ready” for something new to come along, but one thing we were not prepared for was what happened after the cast came off. While the cast wasn’t too tight (her toes didn’t turn purple and she still had circulation), taking the cast off after 12 weeks was extremely painful for her. Her joints were stiff, her skin was very sensitive, and the circulation in her legs was going back to normal and causing her to have leg spasms. She was so uncomfortable and as parents we had no idea what to do to make it better for her. OTC medications can only do so much and her skin being so sensitive frequent soaks in the bath tub wasn’t a good idea, even though it did make her feel better. The 48 hours following her cast removal, she was so uncomfortable. After everything she’d already been through, this was the first time I’d ever actually seen her in pain. Our fun didn’t stop there! Once the cast was gone, she was then placed in another brace called a Rhino Cruiser. She was also in this brace for 23 hours a day for the next four weeks.
At our four week follow up appointment, we finally got some good news. Audrey was good to come out of all braces! At almost 10 months old, she was finally able to see what life was like without a brace or cast holding her back. She was finally able to roll over, sit up and crawl. She never really had much use of her lower body up until that point so we still had a lot of work to do, but she was determined! We started physical therapy again and once Audrey learned how to use her lower body, we couldn’t stop her! She met all her missed milestones quickly and is now right up where she needs to be now. She learned how to walk (something we were unsure about initially) and now she’s practicing her running skills! Audrey has made… I honestly can’t even say leaps and bounds because she’s achieved so much in such a short amount of time that that doesn’t even seem like the right expression. She was one of the sickest babies in the NICU, who could have not made it through her first night, and she has now turned into a sassy toddler who lets nothing (and I mean NOTHING) stand in her way. She’s silly and fearless and way too smart! I feel so lucky… blessed… grateful…, and any other adjective that will fit in here, to be her Mommy! Everyday she learns something new and I’m just amazed by her Every. Single. Day.