Sunday, April 29, 2012

How far we've come

We just had a follow-up interview for one of the research studies we are participating in. This one in particular is investigating improvements that can be made in counseling parents that receive diagnoses like HLHS. They are interested in how we make decisions based off of what our doctors tell us and how our experiences change our method of decision.making. So I looked back at pictures from right after Jensen's surgeries and re-read my blog posts around that time. It seems like a year ago, although it really hasn't been long at all. It is simply amazing to me how far our little warrior has come. When an adult had open heart surgery, recovery is long and painful. Our little guy has rebounded from essentially four open heart surgeries like they were nothing! People always say kids are resilient, well, I think heart kiddos are extra resilient (but I may be biased ;) ). 

Here's a look at what has changed in the 9 weeks since his surgeries. 

10 days after surgery, his chest was finally closed
Those first few days Jensen were just complication after complication. It seemed like for every piece of good news, we received three more curveballs that totally changed the game plan. We never prepared for all the things that went wrong. The thought of ECMO never entered our minds until Dr. Fuller came out, looking exhausted and said that it was the only way to keep him stable. That time in his hospital stay seemed like an eternity. We were pretty much zombies and going home seemed so far away.

Jensen weighed 9 lb 5 oz at birth and gained almost a pound of fluid while he was on ECMO. When we were discharged he was back to his birth weight. Today, he weighs 12 lbs 6 oz! He is now in the 65% for his weight =) Because of the delayed sternal closure and ECMO cannula in his neck, he wasn't able to move for weeks. Although he is a little behind, he is working hard every day on holding his head up and using full range of motion in his neck. Here he is today. Chunky, healthy, and full of life. 

Any time I get overly anxious about his cardiac function or his sats dipping a little more than I'm comfortable with, I just think about how far he has come. Jensen is the most amazing little person I know. He is such a strong, independent boy! He has overcome so many obstacles in his short little life and is now thriving! We love this kid more than anything and are so lucky to be his parents. 

We have a ton of people to thank and couldn't possibly name them all. There were those that prayed for us, sent us encouraging messages, dropped by the hospital for a visit, and donated time and money to get us what we needed. We are beyond grateful for each and every one of you. We definitely could not have come this far without everyone's help. 

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