Home Sweet Home

We came home on February 27th, 2015 and it was better than the first time we brought him home! I'm glad we stayed a month in the transplant housing because it prepared me for our new life back at home without being so nervous. We were all ready to be under the same roof again as one big happy family. It took a few days to unpack and get settled back in. We started with Beckett's room. He received so many wonderful cards, drawings, blankets, outfits, etc...The support from you all was beyond amazing!  Thank you so much! I have packed it all in a bin for him to see one day. Beckett seemed so happy to be back home and in his room. We needed a monitor and he was still getting up a lot at night so he stayed in the bassinet in our room. However, Joe did figured out how to use Facetime as a monitor lol. My mom was still here to help us settle back in. One of the first nights back home Joe and I had a nice dinner with Neal and April, who took care of my Coco the whole time I was gone. We went to Charley's Steakhouse where a friend and ex howl employee and is now the manager. Beside it being an amazing meal, it was very nice to get dressed up and go out with the hubs! It almost felt like my first meal out of prison. I have never been to prison, but I am sure just like the hospital room it is not a fun place. Thanks Jared for taking good care of us and our stomachs. But just like always I could not wait to get back to my peanut and give him his meds. I am quite OCD with his med taking and so far I only trust myself giving them. I did venture out recently for my step daughter's bridal shower and left Beckett with his dad. I laid everything out for daddy. It was very hard leaving him, but luckily (jk) he survived!!!!

On March 3rd, my bestie gave birth to her first son...Beckett's bro! I hope they create a friendship like the one their mommies have. Welcome to the world Bowie Francis Baker! We love you so much and cannot wait to meet you! And congrats to Amanda and Charlie! They waited a long time for this perfect little bundle of joy!

On March 6th, House of Blues held a fundraiser for Beckett. Bad Fish was playing and for every ticket Beckett received a dollar. The girls upstairs in the offices made buckets to pass along for donations at the concert. Joe, Madeline, Cory, Jordan, and I went to the concert. We had dinner before hand and it was great seeing everyone. As soon as they announced the fund and introduced us, Joe and I headed back home to be with Beckett. It is really hard to be away from him. House of Blues has been one of our amazing supporters. We cannot thank them enough for everything they have done. I always thought being an employee there was to get me through nursing school, but now I truly believe I was sent there to become part of this family that would later help me through this crisis. Thank you from the bottom of our hearts.

Life at home is quite busy. Days go by so fast because of his med schedule, I think. Appointments were pretty frequent. At the beginning it was once a week to every two weeks. There are two meds where the dosage gets changed quite frequently. One is Prograf (his immune suppression that he will be on for life) and the other is Cellcept which affects his WBC. With Prograf his therapeutic level is 10-15 and will lower once we get further post transplant. If he isn't in his range they change the dose and then he has to get labs again 3-5 days later. If we need just labs then we go to Arnold Palmer for them. He has to get his lab drawn between 7:30 and 8:30, which is before he receives the medication. The lab at Arnold Palmer doesn't open till 8 and you have to register beforehand. To make sure we are first in line we get there pretty early to register. Last time we went we had to wait 20 minutes for the lab to open. I called up to the unit where he was before being transported to Shands. I wanted to see if his nurse, Kristen, was working and she was! She came down to see Beckett and could not believe how great he looked! She only knew Beckett intubated and with a bunch of wires attached to him. Such a sweet nurse that we will always think about and visit. I did my practicum at Winnie Palmer, which is across the street. My preceptor was working that day too and came out to see me and meet Beckett.

My mom left on March 16th. It was a sad sad day! She was a HUGE help. I cannot thank my dad and siblings for allowing her to stay with me. I could not imagine being at the hospital all alone. Thank you so much Mom/Yia Yia/Gigi. This was my mom on her last night here. Getting all the last snuggles in!

This week will be 4 weeks into the 2nd genetic cardiomyopathy panel test. I am so nervous to find out these results. The first test came back negative, but they expected that since Beckett has no underlying issues. The test results take 8-12 weeks. While we were staying in transplant he saw a nutritionist who wasn't too happy with Beckett's growth. He had us give Beckett coconut oil to give him some extra good calories. Well at his last appointment he had a follow up with him and he was extremely happy with his growth! Beckett is now on the growth curve!!! Still tiny for his age, but daddy and I aren't the tallest of people lol He also gave us the ok to start solids! He said to start with veggies and then fruit. I was very excited with this news! Daddy instantly put together his high chair so we could start to feed him! Last Easter the Easter Bunny got me a Beaba cooker to cook my own baby food. I LOVE it. Beckett's first food was peas! He loved them! He is on the fence with carrots, but loves avocado and pears. Next we will try sweet potato! Thanks Tina for the adorable bib!

I am also happy to announce that this sweet angel is sleeping through the night!

His cardio team was so pleased with him too that we have moved up to every 3 weeks for appointments. I absolutely love and enjoy seeing our team. Our appointment days go like this: Beckett needs lab before so we are up very early to leave for Gainesville. I like to get to the lab by 7:30. After his blood draw, I usually run through Starbucks (still using gift cards so thank you!) for breakfast. Then we head over to the medical plaza for his appointment. Once checked in we wait to be called back. Once called we head straight to the infant area to get vitals. After vitals we go to our room. Then usually they come in for an EKG. After that someone comes to take us to a different room for his ECHO. That room usually has a tv where Beckett loves to watch Mickey Mouse Clubhouse or Doc Mcstuffins. Then we go back to our room and his transplant coordinator Kara or one of the other two come in to examine him. Then they leave to go look at his ECHO with the doctor. Then Kara comes back and the doctor to examine him and go over any questions or concerns. The appointments usually last 2-3 hours.

We are still working here and there with PT and OT. Beckett's shoulders have been a little tight and his pelvis is a little weak all from laying in the hospital. He does everything for his age, but has yet mastered rolling over. This picture is Beckett at his OT evaluation.

Easter was so special this year. It was truly amazing to celebrate at home with Beckett and Joe's family. So thankful and couldn't have been happier! I am a huge holiday nut and it is so fun to be a parent for these holidays.  We did baskets in the morning and then Joe's family came over for a nice lunch. Beckett mostly stayed upstairs, but did come down for a bit to see his family. Here are some Easter pics!

Last night I had to call Kara, our transplant coordinator, about a med for Beckett. She answered and was all giddy and loopy that I was like are you ok? And she screamed "I'm Enagaged!!!!!" I knew it was coming, but I didn't expect for me to call her right after it happened! I am so happy and excited for her! And thanks to Beckett he was the one to bring these two love birds back to each other! When we were trying to find a transplant house Kara said I know a property manager guy he might be able to help you find something. So we called Eric and sure enough Eric had a townhouse to show us. We met him that day to see the house. He knew Beckett's condition and seemed to know the whole team at Shands. I didn't think anything of it because the team seems pretty well known in Gainesville. But then he mentions well Kara and I use to date, but we are obviously still amicable. So I was thinking ok they "dated, like went on a few dates." Well at our next appointment Kara tells us they dated for 8-9 years!!! Ok Eric that's a little different than date....lol Kara was ready to get married, but Eric wasn't ready. Kara followed her heart with what she wanted and broke it off. Well, after getting us the place and hearing our continued praise of Kara, Eric realized the HUGE mistake he was making! He then slowly started to crawl back bearing gifts proving he was a changed man. Way to go Beckett! As for the engagement, I guess two years ago one of her patients came in wearing a puffy paint t shirt that read Kara will you marry me? She took a picture with the patient and her family and friends thought Eric was proposing. He got a lot of slack for it. Well, Eric contacted the family and made new puffy paint t shirts. Last night at dinner the same patient came up to her wearing a t shirt that said Kara will you marry Eric? And when she turned to Eric he was on one knee with his shirt open to his puffy paint t shirt that said Kara will you marry me? Soooooooooo cute!!! Congrats you two!!!! I am so happy for you both!!!!!! Not only did Kara get her prince in the end she also got her (well deserved) dream ring! 

I was a little choke up tonight knowing Beckett will wake up as a 6 month old! I can't imagine what I will be like when he turns one and so on. My heart is very heavy this week because I know the 10th floor at Shands has been quite busy and stressful these past few weeks. So many families waiting for a heart. I know a couple who received the call but then the team decided it wasn't the one. Please keep these amazing strong kids and families in your prayers. I am beyond so thankful to have the had the journey we had. I am so excited to celebrate my son's first half of life tomorrow and I wish to celebrate many more!