Happy Valentine's Day!

Up until now I really have never been a Valentine's Day fan. Now, it has a new meaning to me. This day will always make me think of Nolan and all the other heart kids and families we have become good friends with. It is hard to put into words the emotional roller coaster you go through while your child is in the hospital for a long period of time. There are wonderful days where you feel on top of the world, then there are days where the team of nurses and physicians tell you to stay close because they are not quite sure what the night may hold for your child. As most of our children have

 

Cohen's Last Day at CHP

visible scars from their battles, the parents also have emotional scars that will never go away.

Tonight I saw another one of our heart family friends be discharged. Another successful story! Cohen (Steph and Dave's son) got discharged and is heading home for the first time in his first 5 months of life. I am so excited (and nervous, in a good way) for them! Cohen is such an adorable boy, and a fighter!

Sir Ollie Extubated!

And then there is Oliver (or Sir Ollie as we like to call him). His parents, Ashley and Trevor, have been in a battle with his health since the day he was born.  He was diagnosed with a rare heart condition called Total Anomalous Pulmonary Venous Return (TAPVR) at 18 hours old. Ollie has had his fair share of ups and downs. He recently started receiving feeds for the first time ever and today got extubated! We are so excited for Ashley and Trevor, it is such a relief.

Nolan and I were the face of CHP's Foundation Valentine's
Email and Social Media Post

Then there is our Nolan. He is doing absolutely amazing. I get scared because how well he is doing. He hardly cried today! We all think he has felt so bad for so long that now he is like, "wow, this is how I am supposed to feel!" I spent a good part of my afternoon with him on the play mat working on exercises, laughing with him, smiling...I think back to our first moments when this journey started. That fear still sits way inside of me and I can't believe all we have been through. It is all hitting me. I am sad, happy, angry and scared. I am a mom of a child who has had a heart transplant. Worldwide, approximately 300 to 350 pediatric heart transplants are performed each year, representing about 10% of the total number of heart transplants performed. Nolan is one of those 300. Mind blowing.

So, Happy Valentine's to everyone who takes the time to love our son. We love and appreciate you all so much. Our son is coming back. I could cry just thinking about how well he has done the past few days. I pray it continues. His cultures came back negative! For preventative measures he will be on antibiotics for six weeks. Other than that, we are continuing to raise his bolus feeds and should meet goal by early next week. Our biggest challenge will be physical feeds. But, like everything else, he will make it!

Happy Valentine's Day!

#nhos
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