Mom Brave: Denver’s Story

December 7, 2015 in Love Notes

A few months ago I wrote about being “Mom Brave” (Click HERE). I have seen COUNTLESS moms who are perfect examples of what I’m talking about. It’s amazing. The Mamahood has been a huge blessing for me to meet those mamas as well as discover their stories. There are so many miracle mamas out there as well as miracle babies. I’m excited to share with you an inspiring story from one of them.

Meet this sweet family, the Myers:

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Here is their story:

“My husband, Taylor, and I tried for almost 2 years to get pregnant and stay pregnant; we had 3 miscarriages. After seeing a fertility specialists and getting artificial insemination, we got pregnant and stayed pregnant- but not for long. This is our story….

On Sunday morning, January 25th, I woke up and threw up (I did this every morning). I stood up and immediately felt a huge gush. This was the first time I felt my “mothers intuition” kick in. I KNEW my water had broken even though this was my first baby. I was completely in shock, I was only 24 WEEKS PREGNANT.

Long story short, I ended up on strict bed rest where I was able to keep that sweet babe in for 3 more weeks! Each day was a huge victory. When I first got to the hospital I had several doctors tell me that my baby was not going to make it-I didn’t let myself believe them.

On Friday, February 13th, at only 26 weeks and 6 days pregnant, we welcomed a beautiful baby boy (we had no idea what the gender was) into the world. Denver was born weighing only 2lbs 4oz and just 13 inches long (he was the size of my husbands palm). He was immediately taken to the NICU, resuscitated and continued his development there for the next 100 days.

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While in the NICU we found out that Denver had a stage 2 & 3 brain bleeds (stage 4 is the worst). We were told that it could cause developmental delays and Cerebral Palsy but we won’t know how it affected him until he is older. Because Denver was so fragile I had to wait 10 days to hold him, and even then I only got to hold him for 5 minutes. Having a micro preemie in the NICU was full of ups and downs, like a huge roller coaster. There were too many times to count that we watched our baby turn gray from not breathing. Our hearts stopped for minutes while nurses rushed around our tiny baby as they fervently stimulated and even bagged him to get him breathing again. He received 4 blood transfusions due to the fact that his tiny body wasn’t strong enough to make enough. It was beyond the scariest 100 days of our lives.

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Denver has been on some type of oxygen support since birth. Because my water broke at 24 weeks Denver’s lungs stopped developing and he was diagnosed with chronic lung disease. His lungs were EXTREMELY underdeveloped causing him to be on a ventilator for 1 week, cpap for 4 days, high flow oxygen for 2 months, and low flow oxygen for 8 months and counting. He wears his oxygen 24/7 for the most part. We occasionally take it off for things like baths, getting dressed, and we may or may not occasionally run around the house yelling “NO TUBES!!” ?. Thankfully his lungs are improving day by day. We see a pulmonologist almost monthly and do two different inhalers morning and night.

Denver is 100% tube fed breast milk through a g-tube. He can’t eat by mouth because he aspirates it into his lungs and airways making his lung disease much worse. Because Denver doesn’t eat by mouth he doesn’t really know what being hungry feels like. He could go 10 hours without food and not realize that what he was feeling was hunger. Being tube fed has caused a huge disconnect between his belly and his mouth. Eventually he will be able to eat by mouth so we are in outpatient feeding therapy that we attend once a week. We work on putting the spoon in his mouth and mimicking what it’s like to chew and swallow. He doesn’t always love having things in his mouth because he has been a little traumatized with doctors shoving tubes and everything else in his mouth his whole life.

He also had severe GERD (acid reflux). His GERD was making his lung condition worse so he got a surgery called, Nissen Fundoplication. The Nissen surgery is preformed by wrapping the upper part of the stomach around the lower half of the esophagus. With this surgery it should be near impossible to throw up and/or reflux. But nothing is impossible to Denver ;). After about a month of having the surgery Denver started violently throwing up 2-4 times a day. He has continued to do this for 4+ months now and we still don’t know why. We have tried what seems like 1,000 different medications and adjusting his feeds to make the throwing up stop, but nothing has worked. So for now we do what we do best, we just deal with it. Denver throws up so much that we have to carry a “puke bucket” with us everywhere, he even holds on to the bucket while he throws up. It’s really sad, but also in a tiny way really cute. He is really such a strong baby!

Over the past two months Denver has developed a severely itchy, red, and very irritating skin rash. It has resulted in 4 trips to the ER, countless doctor visits, and lots and lots of tears. At times I have begged and pleaded for his skin to get better because it’s absolutely heart wrenching seeing your baby sick. This skin rash has been said to be many different things such as; severe eczema, allergies (internal & external), contact dermatitis, chronic hives, and viral rashes. We have been working with a pediatric dermatologist and allergist trying to get to the bottom of it. Luckily, in the past week we have been able to keep this unknown rash at bay with oral and topical medications. Due to some recent allergy diagnosis Denver has a chance of going into anaphylaxis shock, so we carry an Epi pen everywhere.

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Denver is currently 10 months old. He has endured more than some people will in a lifetime. Ever since Denver was born we have used the hashtag #denverstrong. It fits him perfectly, because he is absolutely STRONG.

These past 10 months Denver has taught us that God is real and miracles do happen. We have felt people’s prayers lift us up when we felt like giving up. We are unbelievably grateful to our Heavenly Father for blessing us with this baby who teaches us about the true meaning of life.

Although we don’t have all the answers to Denver’s health problems we will not stop until we get them. Having Denver has been our hardest challenge, but he is absolutely without a doubt our GREATEST blessing. We feel lucky to be his parents. He brings more joy to our lives than we could have ever imagined!”

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Thanks Savannah, for sharing your story. You are Mom Brave and I’m so touched and blessed to know you!

 

Xo,

Aubrey

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