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Thank you Boston

Sometimes when things are a little less hectic, babies are sleeping, and my mind settles down a little, I surprise myself with how much our little family has been through this last year. Heck, how much our family has been through these past almost two years. So many tears were shed throughout my pregnancy with Julia. So many tears were shed after her birth and through her first few months. But the amount of smiles, laughs, hugs, and kisses have surpassed the amount of tears and worries by miles.

Temporarily moving to Boston twice since Julia’s birth was not easy, but the best decision I’ve ever made. Boston Children’s Hospital has provided such wonderful care for Julia, and we have met some amazing people.

Julia’s two casts are gone, and she has five separate fingers on her left hand. Thursday we had an early appointment to remove her casts. Poor Julia was not a fan of the special power tool they use to cut the casts off, but she made it through. We then went to see her hand and foot plastic surgeon to remove the bandages and check everything out.

Her left toe that he attempted to pull up to be level with her others didn’t quite do exactly what he had hoped, but there is an improvement. She may need another surgery in the future, but for now we just let her grow.

Her left hand was probably the most surprising. I wasn’t sure what to expect, but was surprised when the bandage was removed. Five little fingers. Five little separate fingers. The dried blood and still fresh sutures surprised me. Her little fingers were swollen and looked like they were attacked, but I had to remind myself that skin had to be added between her fingers. After being cleaned up a little the doctor said he was very happy with how they looked. He showed us how to wrap it at night and said to see him in six months when we are back for Urology.

We got back to the apartment after that appointment and finished packing to go HOME!

We took a slight detour to Washington DC for the girls’ first visit and had fun watching them take in the sites.

We are now home and enjoying seeing all of our family and friends. Thank you again Boston for being kind to this southern family, and to Boston Children’s Hospital for taking excellent care of our baby. xoxo, Tori

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Home stretch

These past few weeks have been a whirlwind. Here’s a rather lengthy update for everyone.

Julia’s second part of her surgery went well too (sorry for the delay). The Doctor was able to tighten the left corner of her mouth and minimize the sensitive skin that was on her nose.

We ended up staying in the hospital until Saturday (so two days). The first night was in the surgical ICU. Poor Julia only wanted to be held, so that’s exactly what I did. Our evening nurse hunted down a reclining chair for me and that is where we slept.

Friday afternoon Julia was moved to a regular room. The focus was to get her to eat (drink from a bottle). This was difficult as they wanted her to start on juice, which she’s not a fan of. We eventually got the OK to give her formula, and Saturday afternoon hit the required number of ounces to be discharged. Yay!

We spent the next week taking it easy. Julia adjusted rather quickly to having two casts. She has figured out how to crawl, and pull to a stand and cruise along furniture. Every now and then she will look at her left hand, pull at the cast, and say off. We have been counting down the days to when she is free again, and when she doesn’t have weapons attached to her. We have all gotten hit by her casts, and boy do they hurt!

Julia has had a few other appointments during our stay here. She had an orthopedic appointment before surgery. At her one year check up her pediatrician mentioned that her left leg was shorter than her right. We had an orthopedic appointment set already, but it was to follow up with her spine. We ended up seeing a new doctor because I wanted Julia to be seen prior to surgery since her left leg would be in a cast. She had an x-ray done, and we learned that it’s not that her left leg is shorter, her left pelvic bone developed slightly turned outward causing her leg to be pulled up. There is nothing to worry about at the moment, and there may never be. As the orthopedic said, this may be Julia’s “normal.” He also told us that Julia’s spine looks good and she does not have scoliosis. So good news!

We also had a follow up with our favorite, Dr. Borer. He actually did his exam during Julia’s surgery (well before everything really started) so that it would be easier on both of them. He was pleased with how well everything is healing and working. A couple of weeks later Julia had an ultrasound and X-Ray done and we saw him again for an official office visit. Again, everything looks great. We received the all clear for another six months.

A new department we saw this time was the dental clinic. While it is normal to see a dentist this young, especially when you already have 3 teeth and two more coming in, we wanted some more information. One of the unknowns with Goltz Syndrome are teeth. We do not know if Julia will have teeth on the left side of her mouth, if she does will they be normal or shaped differently. The dentist examined Julia’s mouth (which she hated) and let us know that there is a strong possibility of teeth coming in on the left. We don’t know how many, and again what they will look like, but she may have some. The dentist explained things that could be done if necessary down the road, but to just wait and see for now.

Check back later this week for a final update from our Boston stay. xoxo, Tori

PS: If you have Instagram follow me (torisc). I love taking pictures & share more frequently there.

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Surgery Update 1

Thank you to everyone who is praying and thinking of our sweet Julia today! ❤

This morning was an early start for all of us. We had to check in at 6am for a 7:30am surgery. I was grateful to be able to stay with Julia until the last possible minute. I walked her to the operating room and held her hands while she fell asleep.

When Julia had her bladder repair surgery a year ago, we learned that she does not have a clear airway to be intubated. It took several hours for them to intubate her before anything started.

This time around we were prepared and Sean and I reminded everyone that we were told Julia needed an ENT to do the intubation. This morning the anesthesiologist told me they were going to try a new device to assist in the intubation before bringing in an ENT.

I questioned this as multiple attempts can cause swelling, but the anesthesiologist said if we can do this it will make future procedures for Julia a little easier. Well, it worked! The first try went in without a problem.

We receive updates from a nurse every 90 minutes, which is wonderful. So far Dr. Borer (Urology) did his exam and stopped by to tell us that Julia has healed beautifully from her surgery last year and looks great.

Plastic surgeon number 1, Dr. Taghinia, worked on her left hand and foot. For those of you who don’t know, Julia was born with her left middle and ring fingers fused together, and her left toes do not all lay flat. Her third toe actually points down which was the focus of her surgery today.

Dr. Taghinia came to see us when he was done and told us that everything went smoothly. Her two fingers are now separated and he did some work with the tendon attached to the third toe to bring it up. Julia is now rocking two pink casts.

Next up is Dr. Mulliken, plastic surgeon number 2. He specializes in facial reconstruction and is working on two parts. The left corner of her mouth is not a tight corner, it is more rounded which causes her to leak some while eating. He is doing a commissure repair of her mouth.

The other part of her surgery is on her nose. She has a strip of skin that runs down the middle of her nose that he is working on bringing together. That part of the surgery is currently in progress so we will update everyone with how it went when we can.

When she is all done she will spend the night in the ICU and possibly be discharged tomorrow, though we will wait and see how she feels. Thank you again for the thoughts and prayers! xoxo, Tori