“My entire pregnancy we were told we would be having a healthy baby boy. Being my first pregnancy we were unaware of how thorough a 20 week ultrasound should be so when everything came back “normal” we were so happy.
Robert H. Rodriguez was born November 24th, 2014 a healthy baby boy. The next day 12 hours after birth Robert was taken to the nursery for a hearing test that we were told would take about an hour, when 1 hour turned into 2 that’s when my husband went off to the nursery to see what was going on with our son. Not long after that my husband walks back into the hospital room with no baby and a trail of pediatric cardiologist behind him when they told us our son was diagnosed with HLHS ( hypoplastic left heart syndrome) and would have to be airlifted to Houston’s Texas Children’s Hospital and have his first of 3 open heart surgeries.
Robert had his Norwood procedure at 8 days old and did great. Robert stayed in the CVICU throughout his entire hospital stay. He then had his Glenn at 3 1/2 months, 8 hours after surgery Roberts lungs collapsed and he had to be intubated for another week. He then suffered a mild stroke and with that came seizures that were controlled days after with medication. Robert was thriving but having trouble feeding. Mid April Robert had a GJ tube placed and slowly but surely Robert was having lines and tubes removed, in May of 2015 we heard what we had been waiting to hear for 6 months We were going to be discharged from the hospital and be able to enjoy our son! The happiest and scariest day of our lives. After one week of staying in Houston out of the hospital it was time for us to take the 5 hour drive we had wanted to take for so long now Edinburg TX. HOME with our baby boy and our family! We were overjoyed! A beautiful baby boy we could finally introduce to our family! So much love, so much help, so much prayer and most importantly so much support for our Heart Warrior!
Robert has a beautiful 1st birthday/welcome home party we were blessed. Robert loved being home and continued to do great. He started eating by mouth little by little and when Robert was 3 he was able to have his feeding tube removed! Waiting for Roberts Fontan seemed like forever. We finally got a call May 31st, 2019 our son had his 3rd open heart surgery, his last planned open heart surgery, and we always Robert did amazing! We were so proud of him 3 days in the CVICU and 2 weeks in the step down floor then in late June we were cleared to go home.
Robert has always had a speech delay and in August 2019 our son was diagnosed with Autism Robert is nonverbal but with continued therapy he is much more vocal making more sounds and learning sign language. He has been going to school for 3 years now and has learned so much in the past 6 months the improvement his father, teachers, therapists and I have seen is beyond what words could describe. We are so proud of our Miracle and he continues to amaze us! We are coming up on his 5th birthday and we are so blessed to have him at home and see his beautiful smile everyday! We love you Robert Hunter! Keep fighting that fight! May God Bless you always!”
Love, Mom, Dad and Aiden – written November 2019