Annie’s NICU Journey

Only the beginning.

We learned of her defect at 16 weeks due to an abnormal bloodwork result. Followed by numerous doctor visits, sonograms, and a transfer to a children’s hospital post birth so she could have the best care possible.

At 36 weeks and 3 days, Annie came into the world only to be whisked away shortly after holding her in my arms. It didn’t feel right. It’s so unnatural having held a tiny human safe in the womb for 9 months and then watching her go. I was ready to hand her over to her dad to embrace her, only to be separated by the nurses and doctors hands, not knowing the ifs and the when’s.

The NICU was an uncharted territory.

For 50 days, we called the NICU our home. Life was changing and changed in an instant. Words cannot express how we felt. It’s a feeling of guilt, anger, betrayal, heartbreak, sadness, all mixed together. I want to tell you don’t be afraid to have emotions, they make you human. Life is very fragile. I know pregnancy is not easy for most but it’s a huge blessing. I refused to let grief take over and chose hope over fear. Sometimes our strength seems absent to us, just by getting through it, you are strong.

Out of your control.

As much as you want to be there for your child, there are going to be things out of your control. The way you touch and hold your child. It takes 10 mins and 3 people with all the tubes, IVs and wires for you to hold your baby. They expect you to hold for at least an hour. The way you breastfeed. The constant pumping. The feeding tube through her nose. The non-nutritive sucking. The bottle feeding. And finally breastfeeding. But wait, the timing of it, how long she sucked for, equals to this “approximate amount” and the rest will go into her feeds or bottled. There’s hardly any privacy which makes it hard to bond or figure out her needs on your own. Even if it’s requested. You quickly learn to document her charts. You learn to trust your instincts but also trusting the medical team she has. You learn her ticket out of the NICU very quickly. Even if it’s not how you imagined it to be.

Just cry.

I quickly learned in NICU it brings out a rollercoaster of emotions. On top of it being out of your control, the constant alarm sounding off made life so very stressful.

She had her closure surgery the very next day after she came into the world with incisions improperly healing. The best decision was to place a wound vac on it a few days later to speed up the healing process and push the organs back in again. It killed me every time she was in pain. Although, ventilated due to morphine drip which causes lung distress, my radar goes off every time she’s poked for a draw because of the pain she’s in. It killed me. Every. Single. Time.

One step forward, two steps backward.

That saying “One step forward, two steps backwards”, rang true nearly everyday for the first 4 weeks. There was always something. I remember we couldn’t hold her because “holding her” was causing her O2 alarms to go off. I remember her breathing more than the ventilator helping her yet taking her off the ventilator put her in cardiogenic shock. I remember they were able to feed her yet one day they had to stop the feeds due to pressure in her lungs and stomach. I remember the ultrasound result coming back with a “mass” on her liver which turned out to be hematoma that resolved on its own. I remember staring deep into her chest x-rays, at the smallest lungs I’ve ever seen, wondering when the fluid would go away. I remember trying to calm her down so she can breathe, telling the nurses something was very wrong, her alarms sounding off so loudly. I remember walking in the next day only to find out she needed epinephrine shot to bring her back. I remember the gas blood they were drawing every half hour and then the medical director giving us the worst case scenario as the room filled up with her medical team, as they bagged her, switching out her equipments and moving her to a bigger room downstairs to accommodate her cardiac needs, the “ECMO room”, I later found out. I remember having to leave her, unable to help her, in shock, feeling extreme guilt for bringing her into the world, unable to find the words to tell our family that she may not make it…I remember my heart would stop every phone call to check in before we go to bed. Even the calls we received from them out of nowhere. I remember her at her worst withdrawals, the Annie we didn’t know. The heartbreaks we’ve endured daily inside. I remember the lump in my throat leaving her at the end of the day, never knowing what tomorrow would bring. Each day, felt like million steps back.

Finding the positives in the little things.

There were days when things haven’t let up for a long time. We always try to find the positive in the smallest things. The one number that normalizes in her blood has levels. The number of alarms decreasing. The number of medications and dosage coming off. The number of IVs coming off. The heart rate slowly stabilizing every time she hears our voices, the way we touch her, the way we give her kisses. The day they started her feeds again. Her eyes opening. The smallest alertness. The ability to hold her with ease. The weaning of her cardiac equipments, the ventilator, the peeps, and her feeds. The latching. The smallest suckling of her pacifier. Leaving her at the end of a small positive day even if it was just one thing, was our biggest victory.

The end is near.

The last three weeks, I’m not going to lie, felt so long. If you thought and read that the first four weeks had to be tough, it was but not in the least. The last weeks were getting old. We were told most days out of the week, “She may be discharged soon.” There was no timeline. No set date of her discharged. It meant she could be here one more week or 3 months. We had no way of telling. Everything was in Annie’s hands. One day, during her wound vac change, “Let’s send her home with a portable wound vac.” One day, she lost considerable weight that it set her back few more days. One day, she kept throwing up formula, it set her back. One day, her withdrawals from her continuous morphine drip took longer than they thought. One day, she wouldn’t breastfeed in 15 mins, I was forced to let them pump it into her feed or bottle feed her. Those one days, were one days too many. It constantly felt like a daily battle to get her out of there. Finally, after talking with other former omphalocele NICU moms, I decided to keep pushing. That meant, pushing for supplementing, portable wound vac order, no more morphine, getting her off the methadone, getting her through her worst withdrawals, advocate for breastfeeding on demand with bottle supplementation, rooming in, getting EVERYTHING checked off on her discharged list as soon as possible.

One day, “What’s next?” Turned into “That’s it”. It was time to go home. 50 longest, most emotionally, taxing days of my life.


From the bottom of my heart, thank you. You know who you are.

Those that reached out, sending us healthy meals and cute gifts for our baby girl, sweet emails and cards from afar, our parents for visiting as our support system, the friends and gyms for doing her workouts for International Omphalocele Awareness Day, Rebecca, specifically, for setting up Go Fund Me to help offset the cost. I HATE asking for help and absolutely dislike “charity” but I’ll never forget all the donations, anonymous or not, random gifts from friends and strangers alike, you all have helped us get through this so much. I’ll forever be in your debt.

Being a NICU parent turned me inside out and revealed what I was truly made for. It has made me grateful for her medical team who challenge themselves daily. It has pushed me to be strong when all I wanted to do was hide. But mostly, I am grateful to see my girl grow knowing what hard beginnings she overcame.

My Birth Journey | Omphalocele Awareness

Hello January 31st due date.

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.

Communicator Mask

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

My Pregnancy Journey

Let’s rip off the bandaid. When it comes to private matters, it’s not so easy for me to share. I want to be vulnerable and share because it’s so humbling that most of you take the time to care about what’s going on in my life. I really appreciate the patience and support.

We’ve been really quiet about this scare, not just because something is/was very wrong but also because there have been many positives and there was so much we had to learn before letting this out in the open. Yet, there are still a lot of questions we don’t have the answers to. As I’m writing this with events still fresh in my mind, the first thing I want is for those who had a loss, who have been struggling, who are still going through a dark time, to know that they’re not alone. I know how helpful it is to hear similar stories within your community and how you can be supported. I hope to shine light on what to expect. I know everyone has different pregnancies and hardships they’re dealing with. I also know every pregnancy is a huge blessing.

I’ll never forget the night my husband came home early from coaching. “You’re home so quick!”, I said. The look on his face gave me a lump in my throat. Then I remembered I recently had blood drawn just a week ago for a genetic screening of the baby.

“We need to talk.”

We sat down on the corner of the couch. He had gotten the call from our nurse practitioner about my test results from week 16. They had come back positive, showing a high risk for birth defect. It meant my child had a possibility of spina bifida or anacephaly. I had never been more shocked, felt betrayed in so many ways, heartbroken, and so fearful for this life I’m creating.

During the next agonizing two weeks until our “high risk” sonogram appointment, we sobbed for many hours and had sleepless nights. While we still to stay positive that it could’ve just been a false positive or we had the due date wrong. If the baby is further along than thought it can throw the tests out of whack.

We clutched hands watching the sonogram. Memories of my anatomy class comes to mind. The skull looks like it’s a full skull, the spine looks really good, the baby had legs for days and a hand that waved hello to us.

September 4th was a day I’ll never forget.

We had the diagnosis we never expected to hear. Omphalocele. I had never heard of it. I couldn’t even pronounce it, let alone spell it properly at first. I listened to her diagnosis so carefully because I had remembered researching other possible birth defects and what their outcome was to be. Omphalocele was one I researched and I had the image of the defect planted in my head. It’s such a rare birth defect that happens 1 in 4,000 births. It was caused by errors in fetal development. The room caved in on me and got real dark. I sobbed hearing every possibility, the bad and the good. We had to weigh in on the bad first which means the baby had a higher probability of not surviving the first year if found to have certain chromosomal issues, along with other defects such as the heart. After many hard discussion and questions, I looked at my husband and asked the doctor to give us 5 minutes. We knew what I had to do for the sake of our family. As soon as she closed the door…I don’t think I’ve never seen my husband cry this hard, ever, in our entire 10 year relationship. My heart broke in a million pieces, not just for him but for our baby.

Right away, the room immediately flipped for an amniocentesis procedure and within five painful minutes which FELT LIKE HOURS, I had 4 large vials of goldish looking liquid carefully taken from the amniotic sac.

We were told to wait 72 hours for the preliminary results and 10-14 days for the rest of the chromosome results. We left feeling certainly uneasy. That very night, we contacted some of our close family members about the unexpected, the scary, the unknown, not having enough knowledge to leave their questions answered…

I took the whole day off from work for a 15 minute appointment that was at 8 am. Not knowing how I was going to be able to handle it mentally. As we went in that morning with tears in our eyes for our preliminary results, expecting the worst, not knowing what to do, we finally took a deep sigh of relief as the doctor read out the preliminary result. So far the test was showing negative, which is good. The worst was not over yet. We were still holding our breath for the rest of the chromosome tests to come back. With asked more questions. What did we do? What can we do? What can’t we do? The only restrictions I had was flying. That meant my poor dear mother couldn’t hold the baby shower of her dreams for her first grandchild and we couldn’t see our family for the holidays given the circumstances that could happen if I had gone into labor early.

September 17th, my birthday, I took an entire day off from work. Just as I was treating myself on a pedicure feeling great and super relaxed, I received a text from Justin to FaceTime him. Knowing what this was about, all the knots came back, tension was all time high again, I started to sweat but as soon as I saw his calm face. I had a feeling we were ok. The rest of the chromosome results came back. “It’s all clear, baby. Happy Birthday.” Tears of happiness streamed down my face as my toe nails were getting pretty and pink for date night. It was the best birthday present I’ve ever gotten.

There was just one more defect they wanted to rule out and that was the heart. Most babies with omphalocele also have pulmonary issues and heart defects. Our doctor didn’t suspect a lung issue but rather her heart because of the way the sac was pulling it down. Our baby needed an echo and better diagnosis by a cardiologist.

Our appointment was yet again not for another few weeks. We were told they only do two 4 hour appointments a day, not realizing if something was wrong with the heart, they may need to send us to another office, in another building for more tests.

Many beautiful heartbeats, sonogram pictures and videos were taken, after two hours, we learned that the heart is tilted horizontally with the right ventricle slightly enlarge than normal for the size. The cardiologist did not suspect anything serious. The heart beat, the blood flow was fine. Did I mention she won’t sit still for the doctors?

We were pleased to hear really good news and the only recommendation is an echo after birth.

Since then every sonogram and tests we’ve done to date has shown high hopes for the future outcome. We can continue to check off the nightmares. I don’t like to talk about the birth plan I have to have. This will be a scheduled cesarean delivery having the baby under the care of a team of 7 doctors. She will be in NICU 6-8 weeks minimum at a children’s hospital. She will indeed have multiple surgeries to repair the defect but should go on and live a healthy life given that everything goes well.

Looking back on this, it was such a difficult journey to navigate but everything seemed to happen for a reason. I will forever be an advocate for genetic/AFP screening. If your doctor is recommending it, it doesn’t hurt to get tested. Please know if you do get a positive result, it just may mean you need more tests. In fact, it made this pregnancy scary and that much more precious and wonderful at the same time.

Her due date falls on International Omphalocele Awareness Day. While we were in such a dark place for some time, I count my blessings in every way.

We are so excited to meet our little one in the new decade.