Noah the Warrior With Half a Heart || JDP ❤️ Warrior || Austin Baby Photography
I would like to introduce you to Noah, my latest heartthrob…I mean heart warrior. One look at those baby blues and you’ll be smitten too. 😍
Noah was diagnosed at 20 weeks in utero with HLHS- Hypoplastic Left Heart Syndrome. Basically only half of his heart had developed. His parents were given the option to terminate, and told that he likely wouldn’t make it past 1 year old. This amazing little fighter is now 16 months old, playing peek-a-boo, blowing kisses and stealing hearts.
I met Noah and his family a couple of weeks ago to do a family photo session at Old Settlers Park in Round Rock, TX. It was a bit windy and chilly so we had to cut the session short, but we still had a great time and got some great shots.
Noah was born at 11:35am on July 30th, 2019, weighing 7 lbs 10 ounces and 20 inches long. Noah’s mom has documented his story on her blog Laughing After Lemons. You will be amazed and inspired when you read everything this little guy has been through. Here are just a few excerpts:
After multiple miscarriages, I got pregnant with Noah and he stuck around! At the 20 week anatomy scan we got the news that he has HLHS- Hypoplastic Left Heart Syndrome, basically only half his heart had developed! We were given the option to terminate, and told that he likely wouldn’t make it past 1 year old. We wanted to give him a chance at life. We picked up and moved to Houston to deliver Noah and he had his first open heart surgery at 8 days old. This was a 14 hour open heart surgery called the Norwood, and he also had to have a repair on his valve. We remained in and out of the ICU for the next 7 months. Noah had two more open heart surgeries at just 3 months old, one of which had multiple complications. We remained in the hospital for all of Noah's first holidays and it was so difficult to see everything he went through. He crashed multiple times, had countless other procedures, hundreds of blood draws and transfusions. We were finally cleared to move back to our home for the first time with Noah on March 1st when he was 8 months old, and just two weeks prior to the Covid shut down. Noah has come so far since we have come home. From taking 40 doses of medications a day to now only 9. He was vomiting 15-20 times a day, and now maybe 3 times a week. He has begun to crawl and be more adventurous. Noah still has only half a heart and has more surgeries in the future. The next heart surgery is called the fontan, and is typically done between the ages of 2-4 years old. He then will eventually need a complete cardiac transplant.
How has this affected your family?
Before Noah's diagnosis, we were never aware of just how common CHD's are. We have went through so many emotions finding out in utero and so many unknowns to come. We weren’t sure what to expect when Noah was born and we really had to learn to lean on each other and our faith to make it through the days and months ahead. We have learned to truly soak in each minute with him but some days were so emotionally hard and seeing the light at the end of the tunnel was nearly impossible some days. There are still days that are really difficult to remember what all he has gone through, and I sometimes still wake up hearing alarms sounding like when we were in the hospital. As we picked up our lives for 9 months to live in the ICU and fight with Noah, it was emotionally and financially taxing but we had so many friends, family and even strangers helping us and carrying us through the storm.
What advice would you like to give to families experiencing the same or similar circumstances?
Take everything day by day, moment by moment and sometimes second by second. Each day is a new day and I learned quickly not to compare our journey to another HLHSer’s journey because they are each so different.
What advice would you like to give readers who know a family with a warrior/warrior princess baby? (What can they do to help? )
One of the most helpful things for us when we were in the hospital were meals. I would sometimes only eat one meal a day because we never wanted to leave Noah. My husband was working out of town 3-4 days a week so taking care of myself was on the back burner so it was really helpful when someone would drop by a meal.
Is there anyone you would like to send a special thanks to?
Our surgeon and main doctors we are forever indebted to! If it weren’t for them, he wouldn't be here. Noah's Nahnee and Poppee for always being there to help us when we needed it. And the complete strangers that prayed for Noah and our family.
I would like to thank Kasie and Brandon for sharing Noah’s story and congratulate them on their upcoming blessing and Noah’s new baby sister! I always ask my warrior parents if there is an organization that I can suggest my readers donate to. Kasie has asked in lieu of donating to a particular organization, for you to consider purchasing items for families with babies currently in the hospital. She is working on an Amazon wishlist and I will update with the details as soon as it’s ready.
Please keep Noah and his family in your thoughts and prayers. He is a fierce little warrior but the love of a bunch of strangers will only make him stronger. ❤️
“The meaning of life is to find your gift. The purpose of life is to give it away.” - Pablo Picasso
If you know a family that has a child under one year old with a life-altering illness, birth defect, or injury, lives within 30 miles of downtown Austin, TX, and would treasure professional portraits of their precious baby and family, please nominate them by filling out this form.
