Procedure complete; mom and baby doing well
Adrienne and Baby Girl received the FETO procedure at The Johns Hopkins Hospital on Thursday morning and all went well.
I was in the room as the doctors inserted the sheath into Adrienne’s abdomen and guided a balloon through it into the baby’s trachea. With the balloon in place, the baby’s lungs will begin to expand. It was incredible.
The entire procedure lasted all of five minutes. We later heard our sonogram practitioner jokingly refer to it as a world record. I have been thinking of it as a Michael Jordan-style slam dunk from the free-throw line. What really worked in the doctors’ favor was Baby Girl’s position in the womb. She had been head down at every sonogram leading up to the procedure, but on the day of the FETO she was head up, which is critical. Her position allowed the doctors to do their work without complication.
Here is Dr. Ahmet Baschat, director of the Johns Hopkins Center for Fetal Therapy, explaining how it all works. He performed the procedure.
Adrienne was perfectly calm during the surgery. Immediately afterward, however, she started to feel crummy. The rest of the day was somewhat touch and go. Doctors put Adrienne on medicine that prevents contractions and premature labor, a common side-effect of the procedure. It made her feel hot and uncomfortable for much of the day, but she was a real trooper. Thursday also happened to be a really busy day on the labor and delivery unit of the hospital. We waited about nine hours to get a room. In the meantime were in an area where we saw and heard several different live cases, some of which were not so fun. But we made it to the room and rested Thursday night into Friday.
The highlight of Friday was the sonogram. The doctors confirmed that the balloon is in place where it should be and everything is fine for the time being.
There is a data point the doctors have been tracking that measures the ratio of the lung size to the head size. This is one of the markers that indicates the severity of our case. The first time they measured, about a month ago, the data point was 24.7 percent, which put us in the severe category. Yesterday, it was 43 percent, indicating lung growth. The doctors were careful to note that this is not necessarily an indicator of anything other than the balloon being firmly situated and doing its job. But, they said, “We like to measure it anyway because it makes us feel good.” It makes us feel good too.
We are still on the waiting list for Ronald McDonald House and the Children’s House here in Baltimore. In the meantime we have been enjoying the Airbnb that Adrienne’s folks secured for this week. We are going to stay in a hotel with a kitchenette until we get called up.
It has been wonderful to have the support of Andy, Becky, and Adrienne’s sister, Analise, here on the ground during this week. Fortunately, that support continues for the next little while. Adrienne has to stay within 30 driving minutes of the hospital for the next six to seven weeks while the balloon is inserted, and she is going to have her mom and brother and friends come up for different parts of the stay. I will be sleeping in Baltimore but commuting to work in D.C. for as long as I am able during this time. We will be able to move back to our place outside of D.C. once the balloon is out and until the baby comes in October.
The next few weeks will be all about closely monitoring Adrienne and the baby. We will have weekly sonograms until the balloon is removed. It’s likely to come out mid to late September, depending on what we hear from the doctors. We have a final appointment today with Dr. Jena Miller, assistant professor of gynecology and obstetrics, before being discharged from the hospital.
We are so thankful for everyone who has reached out with a kind word or text. Adrienne said she felt everyone’s support as they were wheeling her into the operating room Thursday. It made her feel very calm. Thank you!
We continue to be so grateful to PACT for Animals, the organization that helped us find a foster home for our dog, Lincoln, while we are doing what we need to do for the baby. His foster mom sent a little note of encouragement Friday that made us both smile.