HI THERE, nice to meet you!!! My name is Noah Elijah Gutierrez and I was born 8/28/2014 at noon. I was 6 lbs. 2 oz. & was 19.5 inches long. I was born healthy and passed all my tests. My mommy got to take me home at 2 days old and I was exclusively breast fed. At three weeks old I fell sick. I woke up crying in the middle of the night like I normally did; mommy thought I was hungry but I didn’t have energy to eat. I just wanted to sleep. I remember for the next few hours she was trying to get me to eat and wake up.
I saw my pediatrician that afternoon and they said something was not right and so they called an ambulance. I was rushed to the ER where they did extensive testing. Mommy thought it was just an infection from taking me to Walmart too early in life. I wish that was all it was. After the dr. came and checked my heart, I overheard them tell mommy that it was not good. I was in heart & multi organ failure. I was diagnosed with Coarctation of the Aorta and Complete balanced AV canal defect. My mommy and daddy were devastated. They had to drill a hole in my leg to give me IV fluids and medicines due to my aorta valve completely closing, and I had no blood flow to my lower extremities. My lactate number was up to 15. They told mommy I wouldn’t make it through the night and to have me baptized in the ER before transferring me up to CICU.
I was not ready to prove these doctors right. I had bigger plans. Within 24 hours I was stable and healthy enough for surgery. Due to me being so stable they decided to wait 2 weeks for surgery. I was 5 weeks old (10/2/2014) when I had both heart defects repaired. I did great but came out of surgery with something in my nose. I later found out it was a tube to feed me. I tried to eat on my own, I really did but I just was not ready and not strong enough. I ended up coming home with this tube! I recovered in days from open heart surgery and had no set backs at that point.
When I was about 11 weeks old I started having trouble breathing. I was having to work really hard and losing a lot of weight just with my efforts to breathe. The doctors said my vocals got paralyzed in the heart repair and I needed time to get strong, to heal, and to use them properly. I heard mommy mention TRACH. At 11 weeks old (11/11/14) I had my trach placed. This felt so wonderful. I could finally breathe. There was a lot my mommy and daddy had to learn to take me home. On 12/8/2014 I was finally able to come home. I have been home since and have been thriving.
I did return to the hospital to have a tube put in my belly. That was so painful but I can see now how much easier it is on my nose and on my mommy. I love my tube and currently my mommy feeds me anything she can blend, right into my tube. I am currently 20 lbs. and growing.
After quarterly follow-up appointments with the ENT it was determined that I was strong enough and ready to be decannulated (trach removed) in August of 2015. We were all excited but very scared as I knew mommy loved my trach and found it comforting. On 9/1/2015 I was decannulated. It felt so weird. I had two holes now to breathe out of, but it felt nice. My (stoma) hole in my neck never fully closed so on 3/21/2016 I had surgery again to have my stoma closed. I did great and was discharged the next day.
This is my story so far. I am only 18 months old so there is so much more that will come in my future. My mommy calls me a miracle baby. I just say I was determined.
So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
Letter from Noah
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