One year ago Sean and I were preparing to leave for Boston for the birth of our littlest princess, Julia. We packed what we could into two big suitcases and showered Kaitlyn and Claire with hugs and kisses before leaving them behind. This was one of the hardest things we’ve ever had to do. We were very lucky in that Kaitlyn and Claire were able to visit three different times while we were in Boston, but not having our family together was tough on all of us.
We are preparing to head back to Boston in April for another surgery for Julia. While this time will only be one month verses the two and a half months we were gone last year, we cannot bear to have our little family separated again.
At the beginning of the year Sean and I decided to pull Kaitlyn and Claire from their school and begin homeschooling them so that they could join us in Boston this time. Knowing we will all be together – and Julia will have her two big sisters with her (she absolutely adores them) – makes leaving home and our support system so much easier.
With quite a few things different this time around we have decided to set up a GoFundMe page. Over the last year we have had many family and friends ask how they could help us. If you are able, we are asking for help financially for our next visit. I cannot thank you all enough for following our little story, and for keeping us in your thoughts and prayers! xoxo, Tori
This has been one of the longest days ever! Dr. Borer, the best pediatric urologist there is, came to see us a little after 9pm to let us know everything went really well. A couple of hours after that we were finally able to see our baby girl. Now comes the long road of recovery. Please keep Julia in your prayers while we take one day at a time. Thank you! xoxo, Tori
The day we have been waiting for is finally here, Julia’s bladder surgery. Sean is working on some posts to update everyone on our journey to this point, but for those of you who do not know why she is having surgery I will quickly fill you in. At our 16 week ultrasound the ultrasound techs and doctors at MUSC couldn’t see her bladder. After some follow up imaging and a trip to Boston Children’s Hospital, we learned our little princess has bladder exstrophy. So she has a bladder, but it’s on the outside of her body. Today, some of the top medical professionals will repair her bladder.
This morning Sean, Julia, and myself got to Boston Children’s Hospital at 6am for a 7:30am surgery. Julia was in a great mood during the Uber ride to the hospital, even FaceTimed Papito & Mimi, then quickly fell back asleep upon arrival. As soon as we were checked in I took her out of her carseat and just held her as long as I could. Sean and I were concerned she would start getting restless before her surgery as her last bottle ended at 3:13am (3:30am was her cutoff). Thankfully she just slept peacefully in my arms the whole morning.
Doctors and nurses made their rounds filling us in on how the day would proceed. The communication, attention to detail, and genuine care everyone showed for Julia was amazing. Anesthesia, general surgery, orthopedics, and urology all worked together to make sure Sean and I were informed and that they had their multiple plans in place. When one of the nurses did her final review and was ready for me to pass Julia to her, our sweet little princess gave us a big smile. After tearful kisses she was on her way.
For the last eight hours Sean and I have been sitting in a waiting room. We were told the surgery would take about six hours, once the surgery actually begins. A once full waiting area has slowly been dwindling as each child’s surgery is completed. The updates throughout her surgery have definitely helped pass the time. So far our sweet Julia is doing wonderfully. We will update you again as soon as we can. Thank you for keeping our little family in your thoughts and prayers! xoxo, Tori