Beckett's 8th Month!

Beckett is so far having a fun busy summer. We picked up Yia Yia on the night of Memorial Day. We facetime everyday so I was eager to see what Beckett would do once seeing her. So I climbed in the back to watch his face and he was all smiles once he saw her. Too cute. I was so excited for my mom to play with him because he has grown so much since she last saw him. It was also so wonderful to have an extra set of hands! I always tell my family that Becks is the pooping king, and now my mom truly believes me after she had done about 3 loads of laundry within 24 hours of being here.

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!

                                    We wish you two love, laughter, and happily every after!

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.

Beckett's 7th Month!

A few Fridays ago, Kara, our transplant coordinator called me to tell me it was her last day as a transplant coordinator.  She has decided to take another job at Shands. As much as this saddens me, I know it was a really tough decision for her to make. I had to understand because I just watched my older sister make a huge career change for her family. Kara's job was non stop. I have text and called her at all hours and she has answered me every time. And of course the gift of life comes at all times of the day/night. Kara, I am so happy that we have met even though I wish the reason why was different. You have been such a mentor and a shoulder to lean on through this experience. Thank you for all you have done and most of all for giving me the most important phone call in our life of Beckett's new heart. We wish you the best at your new job and we hope those new patients know how lucky they are to have you! Here is a pic of Kara and Beckett (Beckett looks so little here...tear!)

Bon Voyage Auntie Alex. She went on the most amazing (dream of mine) trip! She visited London, Paris, Barcelona, Marseilles, Florence, Rome, Kotor, Athens, and Santorini. Yes, very jealous and despite what my dad has taught us it is different than Epcot. 

I had a wonderful first Mother's Day! Joe wrote me a very touching message on Facebook that made me cry. Beckett got me a personalized card and book that made me cry again. Coco got me a really cute card too. Joe made me my favorite breakfast, which was very yummy. Andrea, my friend, came by and ate with us. After breakfast Joe had to leave to go get the girls. I put Beckett down for a nap and enjoyed some time to myself. The girls came with flowers and a card and we all watched a movie together. Joe made the dinner I asked for and then we all went for a walk. After that I packed up for our trip to Gainesville for Beckett's cardiac appointment. Happy Mother's Day to my Mom who has been the most amazing mother in the world. I appreciate and love you so much! Happy Mother's Day to Nana in heaven. Thank you for always watching over us. And Happy Mother's Day to all the Mom's out there! Our job is 24/7 but the best job ever.

Beckett had a check up on the 11th and my niece Jordan came with us!  It was so nice to have gone a month with no labs and appointments. However, it is always great to see everyone. The lab we go to loves seeing Beckett and could not believe how big he has gotten! Our favorite nurse checked us in and got Beckett's vitals. He now weighs 15 pounds and 12 ounces. I called his nutritionist after the appointment and he is still super happy with his growth! We will get to introduce meats next month. He  now will get 3 meals a day. This made Beckett very happy because he seriously loves to eat! We got to chat a bit with Allison who was our coordinator for the day. Beckett was very silly during his echo making his echo tech laugh a lot. Jordan got a photo of us together. She enjoyed getting to see what an appointment was like for Beckett. Thank you for the help, Jordan!

After the echo Beckett got an EKG. Dr. Fricker came in to say hi to us. We haven't seen him in awhile. He is such a sweet guy! He couldn't believe how big Beckett has gotten. He asked how my sister was doing and told me how he was just with the transplant coordinator from her hospital. He said Beckett's heart looks beautiful and to keep doing what I am doing. Dr. Shih came in to examine him and said I got nothing! Allison text me later to tell me all his labs came back in range. So once again no labs or appointments until next month! Hearing all this good news is like winning the lottery...even better. I am so thankful for everyday. I have learned to live in the moment and appreciate every little thing because I don't know what tomorrow brings. But I do know that I am so incredible thankful. 

On the 12th, we celebrated Beckett's 7th month! That's right...7! I have started to plan his first birthday. He has kind of said Mama, Dada, and he goes um when he is getting food. He rolls from stomach to back and has rolled back to stomach twice. He loves to play, be sung to, tickled, read to, give and receive kisses, snuggle, and thumb suck. He is a very happy baby!  I love him so much!

One of the heart moms started a group called Broken Hearts. They bring dinner every Wednesday night for the patient's families at Shands on the cardiac ICU floor. Every spring they have a picnic out on a lake. We took Beckett to it and got to see some staff from the hospital and see other heart families. There were so many activities for the kids to do and I cannot wait for Beckett to be big enough to enjoy. It was awesome seeing all these kids running around and then realizing they all have zipper scars. I hope Beckett wears his proud. He has been through so much in just 7 months of his life. He truly rocks!

May and June are the months for visitors! Beckett got to meet my "Big" from my college sorority. She was a dancer as well and is a retired Dallas Cowboy Cheerleader. She has a little girl and a baby boy that is 3 months older than Beckett. They just brought their daughter, Piper, to take her to Disney World. It was so great seeing her and meeting her husband and daughter! Piper was so sweet to Beckett and super careful of germs with him. Look at Becks checking out Piper! Such a flirt and ladies man!

Next comes Yia Yia, Papa P, childhood friend and her family, my bestie with her family (can't wait to hold her son), and Joe's side of the family. We can't wait to see you all!

After seeing my Big we stopped by Daddy's work before it opened for the night. I love Beck's little protection headphones. We hope to visit Daddy more often!

Happy Memorial Day! Thank you to everyone who has served for our country! You all are true American heroes. We had lunch with Papa on the outside patio of his place and then Beckett and I picked up Yia Yia from the airport! 

We are slowly, but surely venturing out of the "bubble." It is nice to do things, but then the panic and anxiety afterward sets in.  We are looking forward to Beckett's first summer and all that is planned so far. Thank you all for the continued love, prayer, and support. 

Happy 6 Months Beckett!

Beckett turned 6 months on April 12th. We celebrated the day with a photo shoot and cupcakes! At 6 months, Beckett loves to babble, blow raspberries, give kisses, play, snuggle, and most of all eat. He has tried peas, carrots, avocados, sweet potatoes, pears, and apples, which seem to be his favorite. Here are some photos from that day...

We had a follow up appointment with his pediatrician and he was very happy with his growth. Our new doctor is amazing and he is a father of 8! I don't know when he sleeps! He is just so amazed by Beckett and cannot believe how amazingly well he is doing. A true miracle.

We also had an appointment with our cardiac team. Everything looks great that now we got moved to monthly appointments! Once again the bittersweet feeling sets in. After we saw the doctor, we chatted with Kara our coordinator for awhile. I got to hear all the news about her engagement. After our cardiac appointment we had a physical therapy appointment. I was a little worried how Beckett would do because it already had been such a long day for him. But he did great! We need to practice more tummy time. He is about a month behind. We are still working on rolling over both ways, but Beckett is sitting up on his own! Very proud mommy!!!!

We have gotten into a great schedule. Beckett wakes up between 7:30-8:30. I love watching him on the monitor talking to himself. I usually go in before 8:30 because that starts his first med of the morning. My favorite part of my day is greeting him in the morning. He gets so excited to see me and it just melts my heart. I have to feed my hungry boy right away. After he eats he plays as I continue to give him his meds until 11. Then I usually give him some solid food and after the next feeding he goes down for a nap. Getting him from his nap is my 2nd favorite part of my day. After nap we do some physical therapy work. Then it is another feed. After that feed Beckett, Coco, and I take a walk. We all love our walks. Beckett usually falls asleep towards the end of his walk, so once inside I try to sneak in a quick dinner for myself. Once up we have a reading sesh, which he also loves. I put him sitting up next to me in the nursing chair and my heart melts when he looks up at me while I read to him. We then get ready for bed and start night time meds. After 9:00 meds Beckett is so ready to go to sleep. I like to hold him till he falls asleep. Once asleep I get up to put him in his crib. Before laying him down, I just stare at him and with tears of joy I say thank you over and over to God and his donor and family.

This morning I got word that another family we became friends with received her heart early this morning! I talked about her in previous posts. They waited a long time for this bundle of joy. And then she was born with CHD and has only lived at the hospital. I cannot wait for this family to finally go home and start the life they deserve!!!! Happy Heart Day Aixa!

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!