The balloon is out, the journey continues

Jim Walsh
Our Journey With CDH
4 min readSep 14, 2017

Adrienne is resting tonight following a scheduled and successful procedure to remove the balloon from Baby Girl’s trachea.

A lot has happened since our last update — and even more since doctors first placed the balloon Aug. 3 as part of the FETO treatment. But today we are feeling happy and hopeful about all the progress.

Adrienne and Jim wait for the FETO balloon-removal procedure to get started Sept. 13, 2017 at Johns Hopkins Hospital in Baltimore.

The procedure to remove the balloon started shortly after noon today in an operating room at Johns Hopkins Hospital. It lasted about 2 and half hours, which was considerably longer than the 20 minutes or so it took to insert the balloon a few weeks ago.

As it happens, there are at least two ways to get a balloon out of a baby’s airway, and the one doctors choose depends on a number of factors. Because of the way Baby Girl was oriented today—with her head down—doctors Miller and Baschat had to try both. The video above, around the 3:38 minute mark, does a good job of explaining what goes into taking a FETO balloon out.

I was in the room the whole time Adrienne was on the operating table, and all I can say is that my wife is an incredibly strong woman, and these doctors and their team are the best in the world.

Jim takes an unintentionally creepy photo as Adrienne rests Sept. 13, 2017 after the FETO balloon-removal procedure at Johns Hopkins Hospital in Baltimore.

There were many surreal moments today — including watching the doctors rotate the baby in the womb by manipulating Adrienne’s belly with their hands like they were kneading dough. But there was never a doubt in my mind that we were receiving the best possible care at all times.

A bit more backstory

Our day-to-day has been a lot less predictable since about Labor Day, when doctors first put Adrienne on extra medicine to treat worrisome early contractions. Since then, doctors Miller and Baschat have been targeting today, Sept. 13, as the day to remove the balloon, but there was always the possibility that early contractions could change the game plan.

Sonogram photo of beautiful Baby Girl from our Sept. 7, 2017 appointment with the doctors.

A major variable over the last couple days: Adrienne’s amniotic fluid levels. She has been measuring at a level doctors refer to as “generous.” The extra volume is one of the things that can contribute to early contractions and preterm labor, which no one wants.

The doctors upped Adrienne’s prescriptions last week, told her to drink lots of water and gave us strict instructions take it easy. Until today we have been staying close to the hospital and keeping pretty well put at Ronald McDonald House. We are really happy to have made it all the way to the 13th. The balloon was in for a total of about six weeks, just one week shy of the original plan. We’re excited to learn how the lungs are looking when doctors measure next. We also are anxious about the fluid levels and want to keep an eye on that.

Fun and encouragement

Over the last several weeks, we’ve also received so many thoughtful texts and calls and cards and packages from family and friends. We are incredibly grateful.

Kaylin and Adrienne take a break from Ronald McDonald House for pizza and root beer floats Sept. 8, 2017 at Verde- Best Pizza in Baltimore. We got the recommendation from one of the nurses at Johns Hopkins.

Adrienne’s friend Kaylin stayed with us all last week. Our friends Kate and Patrick from New York visited us on Labor Day, and our friends Kevin and Emily from Chicago visited us on Sunday. Last month, our friend Kavita from D.C. came up for a weekend lunch. We are really lucky to have such a great network.

Where we go from here

We are learning to be more zen about Baby Girl’s arrival. As Miller and Baschat always say, we’ll have to wait and see. We will take things as they come.

Adrienne is due Oct. 28, and we are really hopeful she goes all the way. In the meantime, we are focused on keeping calm, staying sedentary, drinking lots of water, taking our contraction-battling prescriptions and thinking good thoughts.

The hospital staff and nurses recognize us and say hi when we check in now because we have become regulars on the labor and delivery floor. They are all so nice to us.

We see good things ahead for Baby Girl.

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