Children's Developmental Clinic

At the end of May we had the opportunity to spend the morning in the Children's Developmental Clinic, an all-in-one-day approach where various doctors came to our exam room instead of us going all over the place to visit with specialists. We had been referred to this specialty clinic back during our NICU stay, when we met with the geneticist who works with this team. Anyway...initially our appointment had been set for July, AFTER our moving date! Thankfully we caught the mistake (our own paperwork listed June as the appointment date), and they were able to work us in May 31.

Verity and I were up early to prepare for our big day. (Ted and 4 of our kids were in Colorado for a family visit and house hunting trip. We have a rental--hooray! Looking forward to being settled in our new home with mountain views! But I digress...)

As you can see, Verity was exhausted from getting up early, ha! Actually, if I recall correctly, due to a concentrated prayer effort (I believe!), Verity actually let me get a decent night of sleep the night before this long day...a much-appreciated gesture, to be sure, after a number of horrific nights while single parenting.

We first met with a pediatrician for an overview. He showed me Verity's growth chart--at 8 pounds, 11 ounces, she's still a little peanut for a 3-month-old, but he was pleased with her growth curve, as it is proportional and definitely trending upward. I spoke with him about her seemingly unending fussiness, and he said that if it doesn't improve after some more time, he would look into possibly trying reflux medicine, but he wasn't sure that was the best first option. Overall, he was pleased with her progress and her appearance, which of course was incredibly encouraging to this mama!

Next we saw an orthopedic representative. Our doctor who did Verity's castings and tenotomy wasn't available, having had her own baby a couple of weeks prior. The lady who came in admitted that the boots and bar wasn't her specialty; when I asked her about how to better help Verity's feet stay IN the boots and avoid pressure sores, she called in a man from orthotics who ended up being my favorite person of the day: he took one look at Verity's bar and pronounced it TOO LONG! He took it to his shop, shortened it maybe 2 inches or so, and voila! Soooo much better! In fact, Verity spent most of the rest of the day sleeping, lol. Clearly it wasn't the cure-all, as she is still a terrible sleeper at night, but it has helped tremendously with her overall well-being. And Jim also gave me lots of great little tips for getting the boots and bar back on without so much of the trauma-and-tears routine. I am so very grateful. Below you can see a side-by-side comparison of the before and after bar.

Next up, a physical therapist. Her recommendations for Verity included ways to help her do a "push-up" kind of motion to develop those muscles. After 30 years in this profession, she clearly knows a lot and has a lot of practical wisdom, such as trusting our own parental instincts and asking therapists about research to back up their suggestions (or preferences). Best quote: "She is so precious! Your main job is to love her." Aaaaaahhh. More wisdom included to keep on keeping on--keep doing what we're doing; let Verity lead but also let her go at her own pace. Wonderful advice.

The occupational therapist also gave some great practical tips. Since tummy time is not a favorite for Verity, she recommended doing it at each diaper change, just a quick, short burst that would make it part of our routine. For Verity's clenched hands, she suggested a small bit of cut up cloth to roll up and put inside her hands to help with the sweat and skin breakdown as well as give gentle stretching for her fingers. Also recommended: lotion massages, starting at the shoulder and working down to the hands to help relax them and allow us to open up her hands a little more easily. [As a side note...it has now been almost 2 weeks since we were at the CDC, and I confess I have NOT yet done the cloth-inside-the-palms thing, although I did locate and wash the washcloth I intend to cut up for this task!! But, on the plus side, her hands have been so much more relaxed recently, allowing us to work our thumbs and sometimes plastic toy rings inside for her to "grip" and do a bit of "tug-of-war." So...we are making progress anyway!]

The genetics team visit was a very short one; I hardly have any notes. I did learn (upon questioning) that they aren't really interested in pushing for more testing to see if Verity truly is a full trisomy 18 or if she might be mosaic. (Some have questioned, because she is clearly doing much better than many FT18 babies...or at least better than a FT18 prognosis.) Otherwise, the only things I wrote on my note sheet were to "keep doing what we're doing" and "keep the bar of expectations high."

Finally we saw a social worker. Since some folks had recommended looking into respite care, I did ask what she knew about that, whether military coverage allows for anything like that or not, since we heard at one point that Tricare doesn't pay for home visits from nurses (back when we were trying to figure out if we could learn to place the NG tubes ourselves). She said the EFMP folks (Exceptional Family Member Program) would be the place to start asking and that with programs like the ones that pay for respite care, generally the funding is available but it's usually up to the parents to actually find the caregivers themselves. The Colorado Early Intervention people could probably give us referrals. Obviously this isn't something we have time to investigate before our move (which is happening in just about a month, eeeek!). Thankfully, though, we have been blessed with an amazing church family, and Verity has had several overnights with loving ladies who have offered to give us the gift of sleep!

So! That's the story of our visit. We were there a total of 4 hours, and it was all positive and encouraging feedback.

Boots and Bar

May 16, after 7 weeks in casts, Verity was set free...for a few minutes, anyway.

These little feet have come a long way in a short time. [The marks, by the way, are the initials of the doctor who did her tenotomy surgery. Not surprisingly, Verity's skin was extremely dry!]

For the next 3 months, we are in the "boots and bar" phase of the clubfoot corrective measures. Roughly 23 hours a day she has to wear these. See how excited she is??!

Yeah. That makes my hips and knees hurt just to look at her. Poor baby.

The good thing is that she has learned to sleep on her back for the first time! Now that reflux is no longer such an issue for her, it actually seems more comfortable for her to be on her back. Sometimes. Maybe.

Actually, our poor girl is pretty miserable most of her waking moments, especially when it's time to "reboot." I'm not sure how she manages to get a little foot slipped out from time to time, but it happens. And regardless, we check her feet several times a day to make sure she doesn't have red spots indicating pressure sores. (She has a few times; we've learned how to take better precautions to avoid that and are getting better. Of course, now the leather straps are stretching, so we have to figure out just the right hole for buckling.) During the rare moments her feet and legs are free, we try to do some mini-therapy sessions: giving her time on her sides, stroking her feet with various textures, moving her legs so her toes go up toward her face, etc. That part is fun. Strapping her in correctly while she is thrashing her legs and screaming at high volume is not.

Nights are pretty brutal. Days can be difficult, too. She is happy (or at least moderately content) only if someone is holding her and/or holding the pacifier in her mouth. (She can't keep it in her mouth on her own very long at all.) She does nap during the day (like now...otherwise I wouldn't be typing); I suppose we could say she naps at night, too. It's disappointing, though, when we had gotten some decent stretches at night before the switch. We were hoping that after a few days/nights it would get better, but no luck yet. We are hoping and praying she will get used to this sooner rather than later...Mommy is ready to throw in the towel and say forget it already, but I'd hate for all of this to be in vain. Even after the 3 months of constant wear are over, she will still have to do boots and bar for nights and naps...just when we want her to be content and sleeping. <Eye roll>

Prayers for our patience, perseverance, and a decent amount of rest to facilitate a decent amount of brain activity would be greatly appreciated!

Heart and Heels

Tuesday was a very long day but overall a success! In the morning Verity had another echocardiogram, which the cardiologists evaluated immediately and then met with us afterward. Some of the problems that were present at birth have completely disappeared (thank you, Jesus!). Two tiny ("pin-prick") holes remain, but they are insignificant and are not causing any problems at this time. Moving to a higher altitude will not present a problem; in fact, it may be even better for Verity! We are all looking forward to relocating to Colorado, even though it is always a chaotic time, getting ready for a PCS (permanent change of station). The doctors recommended that after we get settled, we get another echocardiogram so the cardiologists there will have an up-to-date baseline from which to monitor Verity.

So Tuesday morning was easy! We even finished early and had time to grab lunch in the hospital cafeteria (surprisingly good) before checking in for surgery--a tenotomy, or releasing of the Achilles' tendons, the final step in the Ponseti casting method for clubbed feet. (Well, almost final, I guess, if you count the fact that she will need special shoes and a bar afterward.) Here are some photos of the progression...I didn't think to take photos each week in the same position, but you can get the idea...

Prior to any orthopedic work--this was at a regular check-up.

First casts

This is after the 2nd set of casts came off, so
two weeks in casts total.

After 3 weeks/3 sets of casts, side view.

After 3 weeks/3 sets of casts.

The last two photos were taken the day of the surgery. (Humorous bit: We were in the operating waiting area when we were told that they weren't sure what to do about removing the casts...they didn't think that all the way through, apparently, so we carried Verity to the specialty clinics to get her casts removed, then brought her back. It was fun to hold her without any casts, but she seemed a bit consternated (is that a word?!) at the feel of someone touching her legs and feet!

The surgery was very quick; in fact, it took longer to put her casts on than the actual procedure dealing with the tendons. She got a local anesthetic; actually, they put numbing cream on the area after the casts came off, and then she got the local after they whisked her away for the operation. She was away from us for less than an hour and came back in a sleepy little bundle.

Right before surgery. Isn't she a doll in that gown?!

After surgery...final set of casts. They look huge!

We expected a horrific night after the anesthetic wore off, but it wasn't as bad as it could have been. And from what we can tell, Verity hasn't been in pain or discomfort the last couple of days. In four weeks we go back to get these final casts taken off. Then she will get the "boots and bar," which I have heard is pretty difficult...not much sleep, etc. So let's start praying in advance that she will not be phased by the transition!

Casting

Cast all your anxiety on him because he cares for you. 1 Peter 5:7

On Wednesday we had our first appointment at the children's hospital--the first of many, I might add. Kenna volunteered to go along as my set of extra hands, and I was grateful for her cheerful company as well as her willing help. It was a cold, rainy day, with poor visibility most of the way, always a joy when driving someplace new. Thankfully the free valet parking eased the stress a bit, allowing us to find the orthopedic clinic with a few minutes to spare.

Verity's clubbed feet the day of her birth

It was our impression that this visit with Dr. W would be a consultation, or an information-gathering appointment. Three different professionals (our NICU doctor, the physical therapist who visited us in the NICU, and our military pediatrician) had all indicated that anything we would do concerning Verity's clubbed feet would happen months down the road. So when Dr. W started talking about casting Verity's feet and the process she would go through, I asked when she recommended starting all of that. "Well, today! If you're OK with that," she answered, and I'm sure she was thinking, "Isn't that why you're here?!" I explained what we had been hearing on our end, and Dr. W responded, "The sooner the better!"

Well. I guess I should have done my homework prior to this appointment, but it actually did make sense that treatment would be easier and faster if we work while Verity is still newborn. In fact, Ted and I had thought in the beginning that intervention while her bones were still more pliable would be what the doctors would suggest. It was just a shift when we were thinking that nothing would happen before our move this summer, let alone immediately!

I called Ted at work to run it by him, and he said to go for it if I was okay with it. WAS I okay with it??!

I thought I was. It helped that Verity did very well on the table while the doctor quickly but tenderly worked. Verity had the hiccups, and she just lay with her eyes as wide open as can be (which for her isn't very!), looking around and shaking each time a hiccup came. She didn't fuss at all, which helped me feel that this wouldn't be so terrible.

But then the casting process continued right up her little legs! The doctor explained that the casts would just fall off if they only covered the feet or even just the lower legs. So, all the way up to the diaper line they went. A bit of smoothing and common sense reminders (sponge baths only, no signing or decorating the cast until after 24 hours) and the job was finished. I was left awkwardly holding my baby, trying (unsuccessfully) not to rub wet plaster on myself or the car seat as we buckled her in. By this time it was close to feeding time, and Verity was no longer hiccuping nor happy.

We stopped by the scheduling desk on our way out; the process really doesn't take that long in the scheme of things...only one week per cast, with 4-6 casts total, depending on how well the adjustments are made. The process is known as Ponseti casting, with the series of casts bringing the feet around to a neutral position. At the end there will likely be a minimally invasive surgery to lengthen the tight Achilles tendon. And then another cast will probably be in place for I don't know how long. And then we go to boots and bar to prevent recurrence.

During the long (and still rainy) ride home, I heard Verity make noises I've never heard her make before. She wasn't exactly screaming, but she was clearly unhappy despite the feeding that was going on. Her noises sounded like a cross between grunts and moans. It broke my heart, as did the memory of trying to hold her with her clunky casts.

What have I done?!

That's all I could think of the whole ride home. The driving rain didn't help my emotional state any.

I did some digging and asked some questions of other Trisomy parents. The rational part of my brain assures me that we did make the right decision; we are setting Verity up for success down the road. Doing this sooner rather than later will mean a much shorter time in casts, though we will have to be vigilant with the boots and bar process.

The fact that we are treating her club feet now rather than later is even a good sign; other T18 parents delayed treating their children because they were in a fight for their child's life in the beginning and had to deal with all kinds of other health concerns or even surgeries. And this makes me feel a bit silly getting so worked up about the casts.

But I can't deny that it hurts my heart to see my sweet little babe half covered by these clunky, awkward casts. She will only be teeny tiny for so long; I already miss cuddling her whole soft self and playing with her little feet. I can barely see the tips of her toes now. I loved squishing her heels; the way her feet were formed caused her heels to feel puffy, almost like a big bubble from bubble wrap packaging.

The first night with the casts on was brutal. Neither Verity nor we parents slept much at all. Last night wasn't much better. But the days have been good; it doesn't seem as if Verity is in much pain or discomfort. And while the casts aren't any less awkward, we're learning how to manage them. Grandma and I gave Verity a sponge bath this morning, and she loved having her hair washed in the warm running water as we held her over the sink. And the kids enjoyed signing the casts...perhaps we can get more creative with her later ones!

So, all in all, I'm trying to reassure myself that we are doing the best we can for Verity, and while the casts aren't my favorite part of helping her, they are a piece of her own unique story, one that is being written completely with love.