Layla Squealing

Layla is a talkative little thing!

How Are You Spending Your Sunday?

I spent part of mine watching Layla roll from back to tummy for the first time!

She’s been so close for a while, but hadn’t completely rested on her belly until today. We knew she was close because anytime we would lay her on her back, she would rotate onto her left side. She now sleeps on her left side, and a few times she had almost completely rolled over but couldn’t quite make it happen. Today it finally happened!

She also slightly pushed up and lifted her head from the floor today for the first time. When we’ve been holding them in a reclined position, they have no problem pushing up off our chests and looking around. But when on a flat surface, they haven’t been able to push up yet. Layla still didn’t completely push up, but today was progress!

Both babies are behind developmentally because of their fractures and because we were too nervous as they were healing to put pressure on their femurs. Lately they seem to be catching up, but Violet’s clubfeet casts have further delayed her physical development. She’s really not rolling over yet or anything. The past week, she’s been working on grabbing her feet (which Layla is also doing), but she is not catching up quite as quickly. It will come, so I’m not worried about it. A physical therapist will start working with them at our house weekly in February, so that should help as well.

Layla is also a chatterbox! She squeals often and tests out her voice. Violet has started doing this the past several days as well. Our quiet house will never be the same! But we wouldn’t have it any other way. : )

Clubfeet – Update #2

Whew! I meant to write sooner, but it has been a very busy few weeks! We were supposed to return for Violet’s next set of casts on Monday the 23rd, but Layla was sick on Sunday the 22nd. She woke up throwing up and continued getting sick all day long. I knew we would probably need to take her to the pediatrician on Monday, and my hubby’s work day was jam-packed, so I postponed Violet’s appointment until Wednesday the 25th.

Last appointment, Dr. E surprised us by saying she would only need a total of two casts before her tenotomy. He thinks cutting her Achilles tendon and letting it regrow properly will release the tight side of her foot and cause most of the correction. Previously he had said that it would take 4-5 casts before the tenotomy, so we were expecting a month or more of weekly casting. We were thrilled!

Shortly after canceling the appointment, Violet woke up, and I noticed that the cast on her right leg had slipped down. Based on past experience, I knew that we would have to soak it off because her foot was no longer properly positioned inside the cast. I called Dr. E and was told to soak her casts off Monday night and wait for our rescheduled appointment on Wednesday. My hubby and I were afraid that her feet would revert back to their pre-cast position during the 48 hours she would be without a cast, but we followed the ortho’s instructions. We considered wrapping her left leg in a plastic bag while she was in the tub to try to preserve the dryness of that cast so that it could remain on her leg, but then we would have worried that somehow that cast would bang up against her right leg and cause a fracture. So we soaked off both casts. I used scissors to carefully snip at her casts while they were submerged in her bathtub, and was able to rip the casts apart after only 30 minutes. The previous time, this took two hours, so I was happy that she didn’t have to spend that long in the bathtub this time.

I took these pictures on Monday night just after her casts were removed (progress after one week in casts):

Left foot

Right foot–more severely affected:

At her appointment Wednesday, I was surprised when Dr. E decided not to recast her feet. His thoughts were that she would just continue to kick the casts off, so they weren’t beneficial and actually posed more of a danger because of the risk of fractures. We’ll proceed with her tenotomy on Tuesday, but now it has turned into an OR procedure during which they will put her under briefly to try to mold her casts better so that she can’t wiggle out of them. Most kids are given a simple local for this procedure, so it’s now a bigger deal than originally envisioned. Scary, but I’m just trying to remain calm and reassure myself that she’s in great hands.

Clubfeet Treatment

Some of you may remember that during a routine ultrasound at 28 weeks, we discovered that our Baby A (Violet) had bilateral clubfeet. At the time, I didn’t know much about clubfeet. We breathed a sigh of relief when we found out that nowadays, correction of this condition has an almost 100% success rate. The correction is not a quick fix though, and I plan to document the process for parents out there who encounter the same issue.

Most doctors in the U.S. use the Ponseti method (also called “serial casting”) to correct clubfeet. This process consists of the doctor gradually manipulating the foot into the proper position using plaster casts. These casts are removed weekly so that the foot can be repositioned, and then a new cast is applied. The cast extends to the upper part of the thigh, so it is a full leg cast.

The earlier you can start this serial casting, the easier it is to correct the feet. Ideally, you want to start treatment during the first two weeks of the baby’s life. Our local orthopaedist wanted to wait until Violet was at a certain weight before she would begin treatment, so we had to wait until she was a little over two weeks old. At the time, Violet showed no signs of the bone condition, so we had no qualms about putting her in heavy plaster casts. This is what her feet looked like when she was a few weeks old, just before beginning the treatment:

And here she is after her first casts were applied:

Here was the amazing progress after one week:

The above picture was taken on October 5th. On October 7th, her femur broke against the weight of the cast when we were trying to change her diaper. Her orthopaedist cut off her cast, and we decided to postpone treatment for a while.

Recently, we decided to switch her care to the OI guru in Omaha. I drove her to the children’s hospital there for her first casts on Wednesday. Here is her “before” picture:

And here she is this morning with her casts on:

As you can see, heavy plaster casts are not holding her down much!

Her doctor said it may take 4-5 weekly casts to obtain the proper correction. After that, she must have a tenotomy during which the Achilles tendon is snipped, and a cast is applied for three weeks. Since her feet did not develop correctly, her Achilles tendon also did not grow correctly. In the three weeks after the procedure, her Achilles tendon will regenerate in its proper position. Once she has the tenotomy casts removed, she will have to wear an orthotic device consisting of tennis shoes with a bar between them, spanning the width of her shoulders. At first, she will wear them full-time, but eventually she will only wear them at night to maintain proper correction. When she is three or four years old, her feet will be considered successfully corrected, and she will no longer have to wear the brace.

Today we noticed that her cast is slipping off because it was applied too loosely. I suspect that the P.A. was afraid of applying much pressure to her legs, so she wrapped the casting material too loosely. Tonight we have to soak the casts off in water and vinegar (during which time Violet has to sit in a tub for three hours because they take forever to soften!), and we’ll return on Monday instead of Wednesday as scheduled to have new casts applied.

This process is no picnic! It’s no surprise that Violet does not like having heavy plaster casts on her legs. She tolerates them remarkably well, but she has her fussy moments. I’m sure the tenotomy is going to be worse for me than for her, and the shoes sometimes cause blisters and result in very fussy babies. I know other babies go through much worse, so I won’t complain too much. And obviously, I am very thankful that such a successful treatment is available!

Who Says Thirteens Aren’t Lucky?

One year ago today–January 13, 2011–we met our babies for the first time…

They were no bigger than a grain of sand, and yet they were already filled with the beauty that we gazed upon exactly eight months later–September 13, 2011…

And today–January 13, 2012–those little grains of sand are four months old!

I’m sure all parents-after-IVF go through this (since many of us have the privilege of seeing our embryos before transfer), but it’s unbelievable to see in pictures how far we’ve come in a year. It’s amazing to see how you start out as a tiny speck and blossom into a full-fledged person. Isn’t life incredible?!

I must confess that the number 13 was not always my favorite. When I was told my c-section would occur on the 13th of September, I was disappointed. I always thought of the number 13 as an unlucky number, probably because of superstition. But when I thought about how our embryo transfer was on the 13th–certainly a lucky day for us!–my perspective on the number 13 shifted. I now believe 13 has certainly been good to us, and I’m excited to celebrate many more 13ths of each month as my babies grow and thrive! : ) Five months old, here we come!

Second PAM Infusion

My girls had their second infusion of Pamidronate one week ago today. Pamidronate is a bisphosphonate intended to help strengthen bones that are weakened by OI. We went to our local children’s hospital this time around, but I think in the future we will head back to the hospital with the nation’s leading OI clinic (in Omaha). We will also likely go there for Violet’s clubbed feet treatment, since the nation’s leading OI orthopaedic surgeon can likely do this treatment for her (more on this later)! These infusions will be given once every eight weeks until the babies are a few years old, and then the frequency will lessen to once every 12 weeks. They’ll receive these infusions for approximately five years. Prior to their first infusion, they broke a total of eight bones in 5.5 weeks. Since their first infusion, they have each broken only one bone (a femur). We are really encouraged by these results and hope our lucky streak continues!

Layla is in the first picture below. She did very well with the infusion. We have them insert the IV into their scalp in order to avoid anyone having to hold them down to insert an IV into, say, their arm (because a bone could break from the pressure). She obviously was not thrilled about having a needle stuck in her head, but she calmed right down after it was over. The first IV fell out, so they actually had to stick her twice! Poor girl.

Violet was much less happy about the whole situation. She cried inconsolably for at least 30 minutes after having her IV placed, and she started to make me paranoid that she had a fracture. (We have the option of having a port placed in their chests to help this process be less traumatic, but that’s not something to be taken lightly, so we’re in “wait-and-see” mode.) My dad joined me for the appointment because my hubby had to work, and Violet eventually fell asleep on him. When she woke up, she was all smiles, thankfully!

It takes a little over three hours for the infusion to be administered. Side effects can include flu-like symptoms, but thankfully our babies have not suffered from any side effects at all so far. We are very fortunate that this medication is available to them! The next infusion will take place around the first week of March, and with any luck, we will be fracture-free this cycle!