Join us this week as Kimmy and Chris Pass share their daughter’s journey after she was diagnosed with CDH.
Tune in at 6:00 pm EST, September 30, 2021 to https://www.blogtalkradio.com/cdh/2021/09/28/september-28-2021-guest-kimmy-and-chris-pass-share-the-story-of-neveah.
Listen to archives of the radio show at http://www.cdhradio.org.
Kimmy was already seeing a high risk Maternal Fetal Medicine doctor because of her past history with being born with CDH and her current lung function. CDH was never on their minds of happening again, but at one of these high risk appointments her daughter’s CDH was caught and doctors referred them to the Fetal Center. “Nevaeh has always had a way to make everything about her, after that we forgot all about my health (all jokes). My pregnancy was easy, I did have gestational diabetes but it was managed with good diet. My water broke at 34 weeks+6 days and she was delivered via emergency c-section due to placental abruption. She was 3 pounds 15 ounces,” Kimmy shared about her pregnancy with Nevaeh.
Nevaeh was transferred to Primary Children’s Medical Center at three days old. Kimmy shared more about her CDH repair “they intended to do her surgery the next day but they couldn’t keep her stable. Her blood pressure wouldn’t come up so they kept pushing her surgery out, operating would have been too dangerous. She had surgery day eight. Her surgeon said “it was about as difficult as you can imagine. There was no left diaphragm at all, not even a sliver. It isn’t IF it is WHEN will she reherniate.” They left her open with a wound vac until they had enough room to close her abdomen. Surgery overall went well, she survived and it wasn’t an easy fix. Keeping her alive has never been an easy task.”
Nevaeh continues to fight in the NICU after being born the first week in January 2021. Kimmy shares, “we’re finally making good progress it feels like. If Nevaeh can keep making steady progress we can try the home ventilator soon(ish). Nevaeh has the worlds best primary nurses, they have saved her life more than once. I keep reminding myself that even though we all thought she would have been a more typical case and home months ago, that doesn’t matter anymore. Every single day she’s in the NICU is a day we have with her.”
Kimmy goes on to share, “the first night we really prepared to lose her after her heart attack, I found myself praying and begging my Heavenly Father. Begging for forgiveness for being so impatient because I felt she wasn’t improving as fast as other CDH babies in our unit. Promising him that if he let me keep my baby I would never take another day for granted with her. That the timeline I thought we had didn’t matter because it doesn’t. Each day with these miracle babies is a gift, I learned that the hard way. She can stay in the hospital as long as she needs to. Good things come to those who wait and you can’t rush perfection, and that she is.”
Currently Chris and Kimmy are living at the Ronald McDonald house. They packed up their entire house and put everything into two storage sheds. Kimmy shares, “we have a lot of stressful decisions to make coming soon and I have no idea what things will look like for us six months from now but I’m curious to see how things play out.” Nevaeh has some big tests coming up; a cardiac cath, brain MRI, a CT of her lungs and a VCUG. If they can keep her pulmonary hypertension stable, they will soon start trialing Nevaeh on the home vent. “We hope things can go smoothly so we can bust out of here before her birthday!”
Interested in sharing your story, please visit https://cdhi.org/shareyourstory/ for more information.
