Listening/watching back, I forgot how much fun I had chatting with these sweet ladies. If you’re looking for some “beaming ear to ear” kind of story, then this is for you. All honest, raw, no excuses and the sky’s the limit coming from the heart of That Deaf Girl.
They were super kind enough to add captions to the podcast video so my DHH readers and I can watch or listen in. And guys, this is the kind of compassion we need in this world.
Forever honored and humbled by this fun opportunity.
While you came into the world 4 weeks earlier, it’s very fitting to write this in honor of Omphalocele Awareness Day.
Justin and I went to his coaches’ holiday dinner January 5th. We had discussed taking our pups to doggy daycare for the next day to get them tired for the week. I remember somehow coming across three random strangers asking the same question, “When are you due?”, feeling annoyed with the same response, “Are you really having a baby in two weeks?” (January 20th was our scheduled delivery date.)
I had no symptoms of this baby coming but was exhausted from being pregnant as usual so we went to bed soon after dinner only to wake up 11:30 that night with a huge kick to my bladder thinking she had me wet the bed. (TMI) But it was odd. I didn’t know what to think of it and crawled back in bed, woke my husband up and said “I don’t know what’s going on but I’m either peeing myself or my water is breaking.” “Okay, keep me posted.” And we were back to sleep. This happened again twice over the course of night with no labor symptoms or contractions. I remember getting up for work that morning thinking I better call out sick to be safe. I mean, I can’t be going to the bathroom in between patients constantly! Justin had said “Maybe you’re having urinary incontinence.” (Cue LOL) and called my doctor right away.
I was googling water breaking symptoms, remained very calm, hoping it wasn’t the case. I had my “Natural Mama” book opened to week 36-37 making sure I wasn’t missing anything. I forgot to eat or have my coffee.
My doctor called back and we were instructed to go to the labor and delivery floor at Harris downtown. We had our bags packed ahead of time and left them in the garage in fear of the dogs next-level-freak-out. Since we were already putting the dogs in daycare, I told the sweet lady at the front desk they might be staying overnight. Little did we know they ended up staying the next 5 days.
The drive downtown was very quiet. They checked us in, my water breaking was confirmed with a closed cervix. Still no symptoms. Only the baby moving around as usual with a good heart beat on the monitor. The nurse had warned us about my on-call delivery doctor who has a dry humor and sure enough he did, “Okay, we’re having the c-section today.” My face was blank. I was totally unprepared. Not because of his jokes but because of how early she’s coming and being the OCD person I am, I felt like nothing was done at home, I didn’t even get a chance to “nest”. I’m just crazy like that!
Justin and I had a heart to heart as it was our very last moment before we were parents. We knew we were having a baby with a condition but didn’t know what to really expect.
Strangely, because I forgot to eat or drink that morning, I was able to deliver her right away via cesarean. Within a couple hours of checking in, I was already in the operating room getting a spinal block and prepped for surgery with my husband who was allowed to come later. Thankfully, I had Communicator Mask samples which enabled me to stay comfortable and read his lips to know what’s going on. The anesthesiologist also had one as he was by my side the whole time relaying on what’s happening during the cesarean and making sure I’m stable.
Our baby girl screamed into the world January 6, 2020 at 12:01 pm weighting 5 lbs 14 oz. “I hear her!”, I said behind the drape. Tears welled up in both of our eyes as soon they clamped her, I told Justin not to let her out of his sight. She had a medical team of 15 people due to her omphalocele. My wish was to hold her before they transferred her to children’s hospital NICU. And we both are so grateful for that opportunity. Soon, they put her in a box and whisked her away with her daddy.
I recovered by myself with a nurse for the next couple hours before transferring to the next floor up where I would be staying the next few days, without my daughter. That night, I walked to my wheelchair and got to see sweet Annie again in my arms before her first surgery the next day…
This may be cliche, but Annie changed our lives. Nothing can prepare you for being a parent. The emotions, pride, fears. Being a NICU parent is even harder. Words cannot describe what it feels to come in every day with excitement and leave empty handed. Not knowing what the next day could bring. We’re grateful for every small moment we get with her, even if we’re not allowed to hold her.
We’ve struggled so bad (still do) with our emotions about sweet Annie being in NICU and missing a ton of her newborn moments without her home. To other moms and dads out there, you think I’d know what to say to everyone right now standing over their isolated box or crib, I don’t. It would be super selfish of me to say “hang in there” and give you a peace of mind. I hate when others try to be an “optimism bully”. No pep talk could make the situation right. Everyone has their own story. You’re looking at your own heart outside of you and it’s so vulnerable at this point or any point in your life.
|Omphalocele Awareness Day|January 31|
January 6th, 2020, our daughter Annie came into this world with this condition. An Omphalocele is when the liver, intestines and sometimes other organs do not migrate back into the stomach cavity around the 12th week of pregnancy like they should. This condition affects 1/4000 babies, the cause is unknown and the rate of them occurring is rising for unknown reasons. Many times Ompalocele’s are an indicator of other center line defects and potential chromosomal issues some being fatal. When Annie was born, her liver and intestines were in a translucent sac where her belly button should have been. We were lucky to learn that her “only” complication was this and she was not affected with any other issues stated previously.
On her second day with us, she went in for surgery to place her organs where they belong and get her belly closed using a bio mesh that will allow her muscle to grow together. Over the coming weeks, we watched her fight through not only healing but also near pulmonary and respiratory failure due to the pressure in her belly, blood pressure in her lungs and lactic build up from working so hard. With the great team at Cooks Children’s Hospital behind her, she recovered over the course of a week and should have her breathing tube removed again soon!
In honor of sweet Annie and other Omphalocele Warriors out there, my husband dedicated a WOD.
31 min AMRAP of: 1 Clean and Jerk 225/155# 6 Chest to Bars 20 Bar Facing Burpees
As you all participate, we ask that you not only think about Annie but also the other little warriors who are fighting in NICUs across the country. Think about the parents who basically move into the hospitals and have to learn way more about the medical field than they could have ever imagined. Who get scared by every bell, whistle and alarm they hear. They are more tired than they could ever imagine and feel more useless and helpless than ever before. All they have is hope and trust that the doctors and nurses know what they are doing is right. Lastly, think about the families who never get a chance to bring their baby home and now are forced to give up all they thought they were going to do with their child. Always remember that you are lucky to be able to do things like Crossfit and everything can change in an instant. You quickly learn how little you actually control. Thank you for your love and support and sorry about the burpees. Much Love, Justin and Amanda