Hooray for Hayden

We welcome Hayden’s mom as a guest blogger today to share her story.

When I was 19 weeks pregnant we went for our routine anatomy scan to find out the sex of our baby. My husband and I had setup a nursery, had washed all of our son’s clothing and lovingly folded it into drawers…we were ready, we had everything we needed, we were prepared parents. We had done everything we could do to ensure a healthy baby: taken prenatal vitamins, ate healthy meals and followed all advice of our OBGYN. During the scan the ultrasound technician excused herself and when she re-entered the room she was handing us the phone and said there was a doctor who wanted to speak to us. The doctor told me that there was something wrong with our son’s heart, it was not fully formed. We were completely shocked, nobody in our family has had a heart defect or any defect that we had known about the other two older kids were healthy kids.

After the initial shock there followed several appointments from Maternal fetal medicine, multiple tests were done, second opinions in Boston were done, and many fetal echocardiograms were done along with stress tests and other labs and genetic testing. After this we were given a grave diagnosis and bleak outcome. Our cardiology doctor told us that they did not feel our son would be a candidate for the type of surgery he needed on his pulmonary branches because the rest of his heart would likely not hold for the surgery needed. We were told that once our baby was born he would likely not survive but that they were going to try and do everything they could do. Our son had 4 congenital heart defects, Pulmonary Atresia, No bottom right ventricle, no branches to the lungs and his heart was backwards in his chest, he also had a VSD as well as Heterotaxy. Our options were to have a medical termination of pregnancy or to carry to term and hope for the best possible outcome.

We went with the latter and when Noah was born into the world he came FIST FIRST ready to conquer it all. The first fetal echo showed he actually did have the branches to the lungs making him a candidate for surgery. After his first night he had troubles breathing and was incubated, day four he had his first of three open heart surgeries placing a shunt in his heart. Noah coded and was resuscitated the night following his surgery, went into full kidney failure and we were told we needed to say our goodbyes yet again.

Noah had continued his brave fight and battled hard to stay with us. We stayed 109 days in the PICU. Noah continued his fight with breathing struggles, respiratory distress, poke after poke, test after test and every time he opened his eyes he still smiled through it all. Noah had a strength inside of him that was bigger than himself a strength that gave even us as parents hope.

Once Noah was able to go home at 3 months old after he was put on a ventilator and received a tracheotomy, he continued to meet every challenge head on, from milestone to milestone he had a can do attitude and wanted to try. Learning to sit up, learning to crawl, learning to walk all were things that he tried to accomplish despite being attached to tubes and equipment every day of his life, Noah was determined to find a way around them. He would smile and light up the entire room.

At 10 months old we said goodbye again to our warrior sending him off to surgery for open heart again this time for a Glenn procedure… trusting the surgeons, doctors and nurses to protect and help our son, we said our painful goodbyes not knowing if it would be forever or not. Noah again fought through that surgery and won, going home after just 5 days that time.

Since that second open heart surgery to now, Noah has learned sign language, learned to fully walk, learned to pull his wagon carrying his vent around behind him. Noah has learned his colors, his animals and even how to joke and play tricks on his family and nurses. Noah does not give up easily and he refuses to fail time after time, giving all of those around him a feeling of hope.

In just a few months in September Noah faces a risky surgery known as the Fontann. It is risky for him being that the ventilator is not as compatible with the surgery that he needs. We are hopeful that Noah will continue his fight for his upcoming surgery and hope that he will stay the brave and strong courageous boy that he is for many years to come.

Through each step of this our son Hayden and our daughter Mckenna have been a huge support for their little brother and have made huge contributions to his quality of care and life by always making him smile, learning how to help with his cares and all of his medical issues. They deserve recognition for all that they do as support for their little brother, it is not easy to live life with a hospital room setup in the living room, the beeping of monitors and the need to help with a fragile little brother. They have learned sign language to communicate with their brother as well. So often these siblings go without recognition and we are so grateful that this time our son Hayden was given the opportunity to be recognized on his birthday! This was so special for him!

Hayden’s cake was provided by Sugar Angel Christine Leaming in Spokane, Washington. Thank you Christine for all of your hard work and dedication to Icing Smiles. We look forward to seeing more “smiles” from you in the future!