Becca's Story Finale: Life post Transplant
JR had his 3 month Heart Cath and when he was brought back from the recovery we were told that all looked good all of his pressures were good and the overall function of his heart was great we just needed to wait for the biopsy results.
The next afternoon I got a call with JRs biopsy results and was stunned to hear them say that JR had cellular rejection of his heart! I was terrified instantly, my head went to horrible places. The treatment for this type of rejection was a hard-core steroid burst. Now JR was overall a happy little dude fussy due to horrible reflux but overall was able to make him happy! Ever hear of the term “Roid Rage”??? Well and infants Roid Rage is no freaking Joke!! Crying, screaming, holding his breath, hitting, literally nothing would make him happy until he was sleeping or had a bottle.
Naps consisted of him sleeping on me. Bedtime was extremely tough! I will say though those steroids gave him the chunkiest cheeks I have ever seen!! In the end, we made it through the burst! The following month we had to take JR in for a repeat heart Cath… We prayed so hard and leaned on our prayer warriors! Results were in and there were zero signs of rejection!!! We were overjoyed with this news!
Month after month life became just a little bit easier. We would drop medication or limit the dose of a medication. Appointments became more spread out. We were able to do more regular things as a family! There were really no limitations for JR at this point he was able to be a normal baby! We had a fantastic summer with family and friends enjoyed many firsts with JR. Next thing we knew it was time to celebrate JRs 1st birthday!! How was our baby 1 already?!? We had a perfect get-together with our families and JR absolutely loved his cake!
The next huge milestone was 1-year post-transplant!! We did it!! We made it 1 whole year with a baby who had a heart transplant. They told us to be expected to be admitted at least 18 times the first year…we were never admitted, never sick, nothing it was amazing! We planned on having a celebration for JR but with COVID running high we had to cancel and reschedule till May because you just can’t not celebrate it!
JR was just recently admitted to the hospital for the first time. He ended up with Norovirus which is a horrible Stomach virus that I wish upon no one! It was very scary seeing our poor boy so sick, only wanting to be in mommy’s arms, not eating at all, barely drinking, and yet having the worst diarrhea and screaming when he would go because it was so painful. We were admitted on a Friday and were finally able to leave on Tuesday which I’m so thankful for because boy it’s a whole new world trying to keep a very active 1-year old content in a hospital room!
With now being 14 months Post Transplant JRs meds have been cut down to just 6 meds twice a day! We are able to meet with the transplant team every 3 months now opposed to every other week! Life will always look a little different for JR but we will never keep him from anything and be sure to tell him he can do whatever his little hero heart desires!
We are now so ready for the Wisconsin Spring and Summer weather to arrive so we can have some more fun and make even more memories!!
Special thank you to Becca for sharing her family's story with JR's transplant, as a personal friend of mine I'm so thankful that JR is thriving!!
My heart warrior collection is available HERE
If you are having trouble with losing weight before or after a baby please reach out, I have VERY affordable packages for custom meal planning and workouts, it doesn't matter if you have a gym or not!
If you'd like to join JR's Family in Briggs & Als run/walk for Children's Hospital follow the link below to join their team! Our family will also be there in attendance!
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