Big Journey

We embarked on a big journey to Minnesota yesterday to allow Lexi to meet another of her Great Grandmothers as well as the rest of Brian's mom's family. She did amazingly well on the 9 hour car drive, only getting fussy for about 10 minutes total (excluding when we had a bottle shoved in her mouth, when she obviously fussed the entire time). She was rewarded by meeting her Great Grandma Beverly for the first time, and she gave her plenty of smiles.

The rest of the family slowly trickled in, and she was able to meet most of them. She enjoyed a little hold time by her cousin Haley, as you can see in the picture, as well. We went to a bar and grill for dinner, and Lexi slept through the entire dinner and then went straight to bed when we got home. We were all amazed by her ability to sleep through such noise, but that's the advantage to having a NICU baby! Although we are excited for Lexi to meet the Minn. family, we are a little sad that we can't also be in the Quad Cities today to welcome Laura's new nephew Jack. We're excited to see him next weekend, though.

Hip History Lesson

Over the past few months, we've gotten several questions on the specifics behind Lexi's hip issues. These have ranged from what exactly hip dysplasia is, to how rare the condition is, to what would happen if the condition went undetected or we chose not to operate. This post will be an attempt to answer those questions, and as a side benefit, hopefully it will force a little more research and understanding on our part as well. I'm not sure every woman wants a history written about her hips, but that's what we're going to do. Bottom line -- for those of you who hated anatomy and physiology in high school, or for those who just care that she survived surgery and six weeks in a body cast, this long-winded post is not for you.

Almost immediately after birth, most babies are routinely checked for a condition known as hip dysplasia, which is a medical term describing a variety of problems with hip joints in children. The initial tests aimed at diagnosing hip dysplasia are pretty simple. Doctors will bring the baby's knees together tightly in front of their body (Barlow test) and then spread the thighs out wide (Ortolani test) multiple times, seeing if they feel any asymmetries or hear any clicking sounds. Hip dysplasia occurs in roughly 4 out of every 1,000 births, although the overwhelming majority of cases self correct without treatment being necessary. Little is known about what causes hip dysplasia, although babies with a family history of the condition, and babies born in the breech position are at the highest risk for it. Neither of these apply to Lexi, but first born females show a higher incidence, which does apply in her case. Native Americans also show higher incidence, although if that fact is relevant, then Laura has some serious explaining to do!

Under normal circumstances, we could have discovered Lexi had this condition within hours of when she was born. However, most of the routine tests performed on a baby were skipped in Lexi's case, as she immediately was ushered from the womb straight to intensive care to undergo far more important cardiac, respiratory, and GI tests. Everything else went on the back burner, and it wasn't until over a month after her birth on Aug 8th that she was tested for hip dysplasia. As luck would have it, not only were both hips diagnosed with the condition during routine tests, but subsequent visits by an orthopaedic specialist revealed both hips to have severe cases of the condition.

Upon discovering this we immediately started focusing on treatment options. Essentially, there were three options, progressing from a removable harness (least invasive), to a non-invasive realignment procedure using only x-ray technology and a Spica cast, to a full-blown open realignment surgery and hard cast (most invasive.) Although the severity of her hip dysplasia pointed toward a likely trip to the operating room, we opted to explore these treatment options in the sequence described, as no surgery would be performed before 6 months of age, and there was always the hope that a harness or closed reduction could produced the desired results.

Plan A, then, became Lexi wearing a Pavlik Harness. This involved a soft brace essentially holding the head of the femur (the ball) into the acetabulum (the socket) by positioning her in a frog-like position. By wearing this harness 22-24 hours per day, for 10-12 weeks, the hope was that the harness would stabilize the ball and socket configuration and allow both to align and develop properly. Typically, this works for 85%-90% of children with hip dysplasia, so we were optimistic Lexi could catch a break and have a soft (albeit uncomfortable) harness do the trick. However, after outfitting Lexi with her Pavlik Harness on Aug 21st, it was not too long before it became clear it was not making an impact, so her orthopaedic specialist pulled the plug on it on Oct 7th after only six weeks.

That signaled the end of Plan A, so it was time to begin exploring plan B, which would have involved fixing her hips in place with a Spica cast, but doing so using x-ray technology, and not an incision or anything invasive. This sounded good in theory, but in Lexi's case, it was becoming increasingly clear that her hips were structurally flawed and reconstruction efforts would be necessary. Really, then, our options at that point became full blown open reduction surgery at 6 months of age, or adopting a wait and see approach. At that time we were still haunted by certain events after Lexi's last surgery, but all signs indicated Lexi's extended time on the ventilator was the culprit, and not anything related to the surgery itself. So, given she would be older and stronger at the time of hip surgery, and given she would be off the ventilator when she came out of surgery, we grew comfortable with the idea of another surgery, or at least as comfortable as we could be under the circumstances.

Better information on the severity of her condition also was flowing in at this time, as x-rays images supplemented hip ultrasounds when Lexi hit the age where babies' bones become dense enough to show up on x-rays. These x-rays revealed that the heads of her femurs were angled outside the socket in such a way that they could not be re-positioned to stay in their sockets as currently configured. Instead, osteotomies would be necessary, which involves cutting the heads off the femur, reorienting them towards their sockets, and then fixing them in new positions with plates and screws. In other words, Lexi essentially needed dual hip replacement surgeries, although osteotomies involve using Lexi's own, fast-healing tissues and bones instead of artificial replacements. Her sockets themselves also were underdeveloped, but evidence suggested properly positioning her hip joints would foster the development of the hip sockets over time. Manually cutting and shaping the sockets likely would have been done with older children or adults, but Lexi's age made her pelvic bones too small to cut and operate on safely. So, given the need for hip reconstruction, and given inaction carried risks associated with misdirected growth, muscle damage around the hip, and the formation of extraneous tissues, the decision was made to operate as soon as Lexi turned 6 months gestational age.

After that, the rest is history. Lexi's had surgery on both hips on Feb 25th, in a procedure that involved 5 hours and 38 minutes of actual operating time, or 7 hours and 10 minutes of time in the operating room counting anaesthesia on the front end and applying the cast on the back end. She spent four nights in the hospital, wore a full body cast for one day shy of six weeks, and then had her cast removed on April 7th. Now three days after the cast was removed, she is moving her left leg constantly, but her right leg still seems fixed in the frogged out position. She moves it a tiny bit when tickled or agitated, though, so things appears to be normal with the right hip as well. Hopefully it's just a matter of shaking off the rust and stiffness for a few days, and then she'll start moving both legs freely once again. As always, only Lexi can choose the timetable that she will follow from here, whether that relates to moving her legs for the first time post-cast removal, or whether that entails crawling, walking, or leaping over other milestones in the future.

Cast Away

We're pleased to report that we, or should I say Lexi, survived the six weeks in her body cast, as it was removed as scheduled just a few hours ago. After a rough couple of weeks on the front end of the body cast experience, she adapted amazingly well to the cast, and now she has free use of her lower limbs once again. We couldn't be more proud of the way she handled it.

When someone in our surgeon's offices busted out the saw and vacuum to begin the process of taking her cast off, he warned us that kids inevitably will scream during the process, more because of being freaked out by loud noises and vibrations than anything else. After cutting the cast in four places on her front side, rotating her onto her tummy, and then doing the same on the backside with not so much as a peep coming from Lexi, he turned to us and said, "Man, she's stoic." He asked about her other scars and surgeries, and told us we have one tough little cookie on our hands.

X-rays immediately followed the removal of the cast. We would have guessed those events would happen in reverse in case x-rays revealed something healing more slowly than anticipated, but apparently children Lexi's age are fast healing and predictable. Fortunately, the x-rays showed everything is going as planned related to the healing process. Her left hip and socket combination looks outstanding, and her right hip appears to be in the proper position, but her socket is still somewhat underdeveloped, so we will need to exercise caution with it going forward. The healing timetable has always been 12 weeks, with half the time spent immobilized in a hard cast, and the other half spent out of the cast while still following a list of do's and don'ts. Bottom line, though, is that we couldn't be happier with her progress to date.

Finally at the tail end of the appointment, she got a little cranky. We're not sure whether it was because a little movement in her legs brought some stiffness and pain, or whether it was just hunger, fatigue, or the other usual suspects at play. Or maybe it's because her skin is irritated and a little raw in some places (the term 'smooth as a baby's bottom' does not apply to our child at the moment.) Either way, we're still confident she will love having shed her cast today. It's quite possible that this experience, and the healing and rehabilitation to follow, will push back the timetable back for crawling, walking, and other milestones, but we don't care. We're just thrilled to have these past six weeks behind us and blessed to have a child handle all the curveballs life has thrown her direction so incredibly well.

Palm Sunday

Now that we are no longer quarantined, we can resume normal activities. So, we returned to our church today for the first time since last fall. We were a little worried about how Lexi would handle the situation, as she is a non-stop talker these days. You can give most kids her age a bottle during church to keep them quiet, but we knew that would invoke nothing but screams with our child, so that wasn't going to be an option. We debated giving her puffs and whips, since she loves those so much, but she tends to talk the entire time she eats with "mmmmm" commentary, so we abandoned that idea. Instead, we came equipped with toys and books and hoped for the best.

When we arrived, everyone was gathered in the common area -- and I mean everyone. Since it was Palm Sunday, they started the service out in the commons and planned to have everyone parade in together. A prayer preceded the parade, though, and Lexi right away tried to compete with the pastor. However, given we were already in the place that parents usually escape to with their noisy children, we just grinned and beared it. After all, we didn't think we should do the opposite and hide in the sanctuary.

Once we got into the sanctuary, we promptly positioned ourselves at the end of a row in one of the back pews, thinking that would make for a quick get-a-way should these antics continue. Although we didn't realize it at the time, we had positioned ourselves right next to what would soon become the high school musicians corner of the church, and these kids rocked it out for a few songs during the service. Lexi got her first up close concert experience with a couple amps right next to her and didn't seem to care for it too much. She continually took her ears and folded them over with her hands to block out the noise. Not the smartest place to position ourselves.

Apparently that wore her out, as she managed to fall asleep soon thereafter and continued to be asleep through the pastor's sermon. We were counting our lucky stars at this good fate. When it was time for communion, though, I took her from Brian to see if we could keep her asleep. Although she woke up, she didn't cry, which was great. When we got to the front for communion, Lexi became a little more alert and started grabbing my hair, as this has become her favorite activity of late. In the middle of accepting the wafer, I felt something graze down the front of my chest, but I ignored it, assuming it was just a clump of hair that Lexi had ripped out or something like that. When we got back to the pew, I investigated further and realized it was actually my diamond earring that Brian gave me when Lexi was born. I became frantic and ended up reaching down my own shirt in the middle of church to retrieve the earring. Not exactly appropriate, but I deemed it very necessary. Luckily, I was rewarded by finding the earring sitting there trapped.

So, our first church experience didn't go as badly as it could have, but it certainly didn't go quite as smoothly as we had hoped either. We're hoping this experience will help us improve next week's Easter church service!