The first weekend in June was Melody (Beckett's eldest sister) and Dylan's wedding weekend. They are high school sweethearts and I felt like I was catching a glimpse of my parents because they got married at the same age as well. As soon as we got to the rehearsal I received the phone call I had eagerly waited for for 11 weeks. The results were in for Beckett's genetic testing. My heart was pounding and tears flowed as the genetic counselor told me that two genes came back mutated (positive). First choice would be that Beckett was born with an excellent heart and I didn't have to go through this testing and results. But that is not the case so any news was going to be a catch 22. If it wasn't a gene then we would have had no idea what caused his cardiomyopathy and would have gotten no closure. However, it being positive means there is a chance Joe and I could be unhealthy and/or carry the gene. One gene they are kind of brushing aside and the other one they are suspicious that that is what caused his DCM (dilated cardiomyopathy). So the next step is for Joe and I to get echocardiograms and get blood work to see if we carry the gene. The gene test will take 3-4 weeks. After those results we will know what our future is for our own health as well the chance of having more healthy kids and Beckett's future with carrying the gene. There is still a chance that it is just unique to Beckett and then our chances of it happening again is less than 1%. Those are the results we are hoping and praying for. The rehearsal was quick and the dinner was great. After dinner we picked my dad up from the airport. I was very excited for my dad to see Beckett because last he saw him in person was 5 months ago!
The wedding ceremony was outside and the reception was in this new shabby chic barn. A very cute setting. Melody looked gorgeous and just beamed with happiness and love. Beckett came to get a picture with his sister before the wedding and then left with my parents. Joe and I enjoyed the rest of the night baby free, which doesn't happen that often these days! Enjoy my favorite pics from the wedding!
The morning after the wedding Beckett got to hang out with his South Florida and New York family. I am so happy they got to see him and hold him. They were huge supporters during our difficult time and still to this day! We hope to celebrate Thanksgiving with them this year.
Beckett enjoyed his first hotel stay!
We had our monthly cardiac appointment in Gainesville. Beckett had an entourage of Joe and I and my parents. Becks had another great appointment! He weighed in at 17 pounds which shot him up on the charts! Joe and my mom got to sit with him during his echo. Allison, his new transplant coordinator just got back from Italy and we got to hear all about it! Her and Dr. Fricker said everything looks beautiful and perfect and we can stop 2 medicines once we finish them! Woo hoo!!!!! Such great news! So thankful! Dr. Fricker knew I was very upset and worried about the genetic testing. He reffered us to get our echos at Shands and would read them as soon as he could. When we left the appointment we got to see baby Aixa and her parents. She looks soooo good! I am so happy for that family! We wanted to go that day to get our echos, but we had to get to the airport for my parents. It is always so hard saying goodbye, but we will see them in August! We are planning Beckett's first vacation to Chicago to meet the rest of his extended family and have a formal baptism (everything but the holy water since he already had that in the hospital) with his cousin Grace!
On Wednesday, we made the trip back to Gainesville to get our echos done. Aja and Jackie, Beckett's favorite nurses in the hospital, babysat him while we went to get them done.
I went in first and when I got out Joe was still sitting there, so my tech and I thought he hadn't gone yet. Joe then told us he already went. I started to freak out!!!! I said I went in before you and you finished before me!?!? And his tech said wait for your doctor, but everything looks ok. Mine said nothing!!! I was almost in tears thinking something was wrong with me. Well, Allison text me later that night saying Dr. Fricker wanted me to tell you both of your hearts look perfectly normal and healthy! Agh I can stop freaking out! What good news! So now next week, Joe and I will get our blood taken for the genetic test. Positive thoughts and prayers that we do not carry this gene please! Beckett had a PT/OT appointment after our echos. He did great, but still need some work. He is skipping over a few things as in not going on all fours, but prefers to stand with help. They want me to limit his standing time to get him more on his all fours. Beckett is rolling both directions (back to stomach and stomach to back), but favors only one way to roll over and to roll back. My mom taught Beckett how to clap and he loves doing it and kind of says yea while doing it. He says mama and dada a lot, and is starting to wave. Beckett cut his first tooth and it is very cute! I had a feeling it was coming when I spent one day with a very unhappy not sleeping baby. Normally, Becks is always very happy and playful.
Beckett's tacro /prograf (immunesuppression med) level was low so we have increased his med. Then that means labs next week to check the level. Once again it came back still low and repeated the cycle. So next week we will get labs again. Poor guy has been poked each week this month. Such a trooper! Allison figured this would happen because of his great weight gaining!
Joe's father's day started with a breakfast room service card by his sink to fill out and at the time he requested breakfast he received it in bed.
Melody drove in to surprise him and joined us for lunch at Papa's place. It was a very nice lunch with Joe's family. I cooked a steak dinner for Joe and the girls, we then opened presents, and then had dessert. This is Joe's healthy dessert...
Thank you Joe for all you do. You are extremely hard working and our problem solver. We would be lost without you! We love you so much and we hope you enjoyed your special day! I got Joe this onsie last Father's Day and this is Beckett in it this year!
Happy Father's Day to all the dads out there especially my amazing father/papa P and father in law/papa G. You two are the most caring, generous, and gentle fathers.
Beckett had a few visitors this month! It was great seeing everyone and having Beckett meet them. Everyone was very supportive during his hospitalization and we cannot thank you enough!
He met my childhood friend, Mitzi, with her husband and 3 kids. (only one of them pictured here)
We got to spend a full day with our besties!!! We finally got to see each other as moms and meet each other's babes. One day was not enough time and we look forward to their return in November and our future trip to Maine!
Two of my nursing friends from school came to meet him! Come back anytime girls!
And one of my first friends I made when I got to Florida came for another visit! We love having Aunt Kelly and her English accent! So does Coco!
and then a friend from work who just moved back from New York and our family's amazing photographer, who is expecting a boy in November!!! We cannot wait to meet baby Mitchell!
I cannot believe it is almost July. We are looking forward to Beckett's first 4th of July, private swim lessons , Beckett's 9 month celebration and his 6 month heart day anniversary, and hopefully having more visitors. Thank you everyone for the continued prayers. They mean so much to us. And thank you donor angel and family for every single day, smile, laugh, and memory you have given us with our son.
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