For Ayla; Born as a Warrior- A Letter From Mom and a Painting From the WarPaint Project Family

Meet Ayla, Warrior Infant From Mom, a letter to her baby.

Ayla May, I’m not sure what the future will be like for you and all of us but I sure hope it’s bright because if anyone deserves it, it’s you my love. With that being said I’d like to give you a little bit of an idea about the story of you and how you came into this world.

It’s Wednesday morning on May 15th 2019. I have severe pain in my back, serious enough for even me to go to the ER. After waiting for awhile after testing, they tell me that I appear to have a full sized baby inside me. I immediately started bawling my eyes out. My mind is racing; thinking how could this be? They tell me I’m in labor. I’m at the Villages Hospital so they tell me they want to transfer me to Leesburg because they are better equipped to deliver babies.

The ambulance ride seemed like it took forever. I thought you were going to be born on the side of the road. We get to Leesburg and into the delivery room. After awhile thankfully your Dad, Grandpa and Grandma made their way to us. It was too late for an epidural, so we were just waiting on you to make an appearance. It’s 2:51pm, you came out. Someone said, “It’s a girl!” and there you were! This tiny little miracle. 4 lbs 12 oz, 18 inches long. They layed you on my chest only for what seemed like 20 seconds. I kissed you on your forehead and they started working on you. You needed help breathing. Your cry was weak, muffled. We didn’t know what was wrong, we just prayed.

You were then placed in the nursery until your transfer to Orlando. I didn’t sleep one wink that night. They wouldn’t release me because I had just given birth. Thankfully the next morning the doctor released me. Grandma and Grandpa came to pick your Father and I up and we headed out to see you.

We arrive in Orlando and found your room. 4906. I think that number will forever be embedded in our brains. Everything was very serious. You were very sick. You were hooked up to a dozen machines and contraptions. You had a team of what seemed like atleast 20 doctors, specialists, practitioners, nurses and rehabilitation staff. We weren’t sure if you were going to make it or if you did, how healthy would you be? You were put on the ventilator to assist you with breathing. You had frequent testing and were watched closely by a cardiologist to make sure your PDA gets better and hopefully goes away. Throughout your stay in the NICU, your chest walls would sometimes be so enflammed that you had labored breathing.

The doctors were starting to get concerned that by 48 hours after birth you had not peed your diaper once. Upon some more testing we found out that your kidneys were undersized and had cysts in them. Then you were sent off to surgery to get your first dialysis catheter placed in your torso. Then they started to perform peritoneal dialysis on you and you’ve had it done every day since then. You’ve had lymphatic massages, occupational/physical therapy and speech therapy (which you will have for awhile outpatient as well). A few weeks after your first surgery, your dialysis catheter started leaking. At first it wasn’t too bad but then it kept getting worse. They had to change your bandage more and more often which obviously puts you at a higher risk for infection. They had no choice but to put a new catheter in and hope for the best. It lasted about a month and then you started leaking again.

You were due to get your G-tube surgery anyway so Dr. Thompson decided to take a look at the catheter from the inside and put some sutures on it. Since then, not much leakage. Let’s hope it stays that way for a long time. You’ve been through enough.

Every day was a challenge and will be for a while… A roller coaster ride. One day you would be getting better and then the next day something would go wrong and we would almost lose hope.

Fast forward 100 days later (today) and you’re due to be released in two days. I cannot believe it. I cannot believe how beautiful you are, how perfect you are… I couldn’t ask for more. Yes, you have a long, tumultuous journey ahead of you. No, your kidneys do not function. Yes, that causes many health issues for you but we will get through this together. You are one of the strongest people I know… you know what? You are the strongest person I know and on top of that, you’re only 3 months old!

You’re a warrior. A blessing. A beautiful miracle. You are loved beyond words. I never knew this kind of love before and I am so thankful that you came about and now I can experience this fierce, unconditional type of love with you.

Monday, August 26th 2019 you will have been in the NICU for 102 days. You will be released and get to see the outside world for the first time. What an exciting day this will be for all of us! Then we embark on our journey outside of the NICU. We will go through a week of dialysis training and if all goes well we will finally be home, where you belong!

I cannot wait to see what the future brings. You’re my little sweet pea, my angel baby. The perfect balance of sweet and strong. My fighter girl. My inspiration. My tiny warrior princess. Love Always and Forever,


Mom

  • Stay Tuned! A Warrior Video of Ayla will be uploaded today when she receives her WarPaint Project Warrior Gift and Painting!


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