Long day

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

It’s here!

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

Before the beginning, part 2

This is the second post in a three part series: Part 1, Part 3

When we last spoke, we were waiting to find out of the cystic hygroma was going to develop in to hydrops, a potentially fatal condition for our little girl.

After five long weeks, we finally arrive to our 16 week ultrasound. The tech is doing all the ultrasound tech things, and we are waiting patiently. She makes what seems to be an offhand comment about trying to find the bladder, then says she needs to step out.

But before she can, we ask her: Hydrops? Cystic Hygroma?

Her answer: All good!

We are incredibly relieved, and yet the last time the ultrasound tech needed to step out, we got some pretty rough news, so our relief was tainted with a bit of dread.

As it turns out, that dread was warranted. While our little one had cleared her cystic hygroma hurdle, we were now hit with a huge number of new issues:

  • No bladder visible
  • No nose bone
  • Left eye orbit smaller than right
  • Part of left brain smaller than right
  • Single line umbilical

While that is a large list, the biggest issue that the doctors seemed concerned about was the bladder. While they couldn’t find it, they did note that the fluid around the baby was normal, implying that she was both taking in and excreting the way she should. They also noted a mass below the umbilical.

Diagnosis: Bladder Exstrophy

If you are new to this term, that is expected. It only effects 1 in about 40,000 births. Essentially, the bladder forms outside the body instead of in. Another way it was described is that we essentially start flat in the womb, and as we fold over, we zip up down the middle. With bladder exstrophy, the zipper gets stuck, and parts of the body form outside instead of inside.

Over the next few months we discover that because of the rarity of bladder exstrophy, the doctor at MUSC only does 3 a year on average. After some research and discussion with our local team, we decide that Boston Children’s Hospital will take care of her exstrophy, and schedule a prenatal appointment for two days before Christmas.