February is CHD (Congenital Heart Defect) Awareness Month. To kick off this month of learning & spreading of awareness, we want to introduce you to four mamas + babes from our very own community who know what the fight is like, first hand, by a tiny heart warrior.

 

Week #1: A Quick Turn of Events

Nayeli Rangel & Baby Sebastian 

 
 “My name is Nayeli I am a mother to 3 girls and one baby boy. My son was born Nov, 2 2020. He was born at 36 weeks due to severe IGUR and low amniotic fluid. During my pregnancy everything was fine and his anatomy scan was perfect. I went to my normal high risk app to check on him and I wasn't allowed to leave anymore- they took me straight to labor and delivery to be induced. He was born at 4lb 13oz. The hospital I delivered at did not have a NICU, and since he seemed healthy after delivery they didn’t think he needed any NICU intervention. He wasn’t really nursing and the nurse said it probably is because he is a preemie and he needed time… well, 24 hours passed and nothing. They ended up giving him donor milk in a bottle and he was taking the bottle, but still didn’t take much. They ended up placing an NG tube and after a few days he seemed to be doing better so he would be able to come home after a week of being at the hospital, he just needed to have a car seat test done. I had left him that morning so I could visit my daughters at home, and as I was spending time with my girls I got the call that something was wrong with my son and the children’s hospital was coming to pick him up to transfer him to their NICU.
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They said they didn’t have much info, but that his oxygen levels had dropped drastically while in his car seat- so we had an hour to get back to the hospital before he was transferred. While at the children’s hospital, after what felt like hours, we were informed that our son had a congenital heart defect which was Total Anomalous Pulmonary Venous Return (TAPVR), as well as a very large ASD (Atrial Septal Defect). He was in the NICU for almost a month, and was discharged to try and grow before having open heart surgery. He was finally able to meet his sisters and everything seemed fine. Little did we know that a week later he would be readmitted and would have to stay until surgery. He was having trouble gaining weight and nursing so he had an NG tube placed again. He had surgery December 22nd at just 53 days old. It was the most terrifying and loneliest days of my life; because of COVID, only dad and I could be with him, and he only came to visit a few times since he was home with our daughters.

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It was a very difficult time for our entire family especially being away from each other. I am so happy we are all together again as a family and that our son is now a much happier baby and is still on his road  to recovery.” @_nayelirangel     

         

Week #2: A Continuous Fight by a Tiny Warrior

 Ashley Paulsen & Baby Ryker  


 “Hello my name is Ashley and my sons name is Ryker and he was diagnosed with CHD when he was 10 days old.

My son was born on April 19th, 2020 and was perfectly healthy, at 8 days old he started to not eat, turned pale, went limp, we rushed him to the local hospital and they intubated him because he was struggling to breathe, we didn’t think he would make it because he was in that bad of shape.

 After that we were then transferred to a different hospital where they did some other tests and they all came back negative so the final test they decided to do was an echo on his heart and they found out he

 had a Coarctation of the aorta (COA). They told us his aorta narrowed and it was measuring at 2 MM and was supposed to be at 8 MM. We were then transferred to Lurie children’s hospital in Chicago where they gave him medication to keep him alive until he had surgery the following day. Once he was in surgery they found multiple other defects besides the COA. He also has a bicuspid valve, mitral valve stenosis, VSD and his left side of his heart is bigger than his right. As of right now he is 9 months old and doing great. We are still monitoring his bicuspid valve narrowing with our cardiologist every month and it’s now just a waiting game for his next surgery to fix that valve.” 


Week #3: Undetected & on the Road to Recovery

 Shawna Olson & Baby Gavin

 

“Hi my name is Shawna, and I am married with 3 children; a 9 year old boy, 6 year old girl, and 19 month old boy. Our 3rd child's name is Gavin, I had a perfectly normal pregnancy and smooth, easy and fast delivery, all ultrasounds looked great. He passed all his newborns screenings and 24 hours after birth we were discharged home. While in the hospital the nurse thought she heard a slight murmur but assured me it was likely nothing to worry about, at his 2 week appointment I asked the doctor to listen for the murmur to see if it had gone away like they said it likely would, she looked up and said "nope I still hear it, I'll send you to Childrens just to make sure it's nothing."

We went about our weekend thinking nothing of it and fully expecting a clean bill of health at his echo. I remember the day so well, we went in for his echo and they came in saying well we know the reason for the murmur and he will likely need surgery to correct it, they went on to explain he had a Coarctation of his aorta. I didn't ask any questions that day honestly, I was in shock, they sent us home with flyers and said they would consult and decide if we should do surgery now or wait. We got in the car and I couldn't hold back the tears, it was like the flood gates had opened, I spent the next several weeks randomly crying uncontrollably. I also later found out his pediatrician was certain it was more than an innocent murmur but bless her heart she didn't feel like telling us would help us since without an echo we wouldn't know if or what was causing it, and she was so right I'd have been a mess waiting for our appointment. A few days later we got the call that there is no benefit to wait and surgery was set up the following week on July 3rd, he was just under a month old. We did all our pre-op appointments and Gavin had surgery as scheduled, the surgery was through his back, so he has a small scar on the left side of his back under his shoulder blade.

His surgery went perfectly and we were discharged home 4 days later. I remember walking out feeling so guilty that we were able to leave just 4 days after surgery, seeing all those other babies there for longer periods of time truly broke my heart. Being a heart warrior mama and spending those 4 days in the CICU changed my perspective on life, life can be so fragile; don't ever take a single moment for granted, and hug your babies tight. While I was in the hospital I remember messaging Audrey & Bear asking if they had any CHD designs, at that time they didn't, so when those designs came out I knew we needed to order one!! Today we have a happy and healthy 19 month old! We go in for a yearly echo to make sure everything looks good, but he's a thriving 30 pound 1.5 year old who adores Baby Shark!!!” @Solson.10

 Week #4: A Heart Warrior Going Home

Ashley Broderick & Baby Charli

 

 My daughter, Charli Blayke, has TAPVC, ASD, and PDA. 

We have just ordered our first CHD blanket from Audrey & Bear and we are soooo excited to receive it when it comes!!

 My sweet girl was born early on 11/02/2020 at 34

weeks gestation. Due to being early she was sent to the NICU right away. At 5 days old she had an episode of SVT which prompted testing and on day 7 we found out about her CHD. She had her open heart surgery on 12/03/2020 at one month old. She spent a total of 39 days in the NICU/PICU and we got to bring her home to our family on 12/11/2020.Coming home was such a blessing and our little heart warrior grows stronger everyday!! We are so thankful for our outcome and remain positive that she will continue to thrive and have the best life possible!!”

CHD awareness swaddle
 

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