Our New Normal!

Hi Everyone! Sorry it has been awhile, but I'm so busy with Beckett and staying at a place with no wifi. I am currently writing on my phone and will finish at a Starbucks.  Life is GREAT! I will back up and start where I left off last time, which was the last few days at the hospital...

I spent most of the days doing everything for Beckett. I was feeding every 3-4 hours around the clock, giving him all his meds, changing diapers, holding him, and getting lessons on post transplant life. We also started to look for housing. That was somewhat stressful. The transplant housing the hospital has a deal with was booked. They were willing to convert a regular apartment into a transplant apartment, but when we saw it we did not feel comfortable bringing Beckett there mainly because it was regular housing and not transplant. We went up the street and found another apartment complex but they only had three transplant apartments and they were all occupied. I was bummed because we really liked them! I told our transplant coordinator our issue and she got us in contact with a property manager. He had a town home that was furnished and the owners were willing to accept a 1 month lease! But since it's a town house and we are only renting for a month cable and wifi isn't set up. The property manager gave us a tv and joe hooked up a DVD player for movies. We were actually discharged on Wednesday the 28th of January, but because of the housing situation we wanted to stay another night. On Wednesday we had to pick up all of Beckett's going home medicines. He has 15 medications. So weird when joe and I barely even take aspirin. Then we had to take a test over all the transplant information to see if we were prepared to take him home and we had to practice drawing up his meds. We both passed!

It was weird and anxious knowing it was the last night at the hospital (forever we hope). It was bittersweet. In just a month these people became family. I felt safe there. Even though the beeping monitors annoyed me it was also a safety net. I laid in bed and looked back at our terrifying experience. I will never forget a single day. I looked back and realized the day it all started. Beckett's coloring was off, he was miserable, and he was drenched in sweat. I remember finding the red diaper and going to the first ED. I remember being worried but not that worried. I remember sending Joe home thinking everything was going to be ok. Then I remember watching my son turning purple/blue in the lips needing oxygen while we were in the ambulance. Then I starrted to get scared and I woke Joe up and said "get to Arnold Palmer now." I remember holding my son and saying "stay with me" and "hang in there I'm getting you help." I remember feeling numb as the 4th floor doctor came to me in a panic and told me my baby was very sick as I watched him grasping for a breath. I remember people comforting me while bringing me to the ICU floor. I remember hearing the dr and nurses calling out orders. One was to intubate him and I just lost it. I will never forget Joe walking onto the floor and screaming "what happened?!?!" I won't forget seeing Beckett for the first time intubated and sedated and staying up all night watching his monitor. I won't forget watching them trying to transport him and it not going smoothly. I won't forget Dr. Freedman looking at me and saying I won't let Beckett go unless he is 100% ok. Well, they got him ok but I still worried the whole drive there. He looked so tiny all strapped in on the stretcher. I won't forget getting to Shands and waiting in the waiting room at 3:00 am on Christmas Eve. We met about 5 doctors repeating our story to each one of them. It seems like yesterday finally getting called back to see Beckett in his new room. We went through these huge double doors, down a hallway with these huge glass rooms one after another. Prior to this I have never been on an ICU floor. Since it was the night shift the lights were dimmed and everything was dark besides the glow of the monitors. Our room was at the end of the hall and there was my little precious baby. Once we got through all the questions for admission Joe and I slept for like 2 hours. Then at 7:00 am we started meeting even more people who I now call family. I remember breaking down Christmas morning because I wanted to be home where we were supposed to be and the PA just hugging me. I remember everyday trying to keep Beckett calm. I remember sending him off for the mechanical heart and seeing him after. I'll never forget the sound of the machine working as his heart. I'll ALWAYS remember getting the call and not sleeping that night with my mom and sister. I remember sending him off for his second heart surgery. I'll NEVER forget watching the arrival of his new heart and I'll NEVER forget reading the text IT'S BEATING!!!! And here we are two weeks since that life saving surgery and we are out of here onto the next step of recovery! How lucky are we? How amazing is my son?

Next morning it was surreal saying goodbye to his team. I cannot even explain how amazing they were and how each one gave me their personal number to call with any questions or concerns. They were all SO happy to watch us walk out those doors! We were so excited to have one of our favorite nurses on our last day! She was our first day nurse and last! Here is a picture of Beckett with her!

I can't even put into words how it was walking out of there with Beckett. It was so much better than bringing him home the first time. His adorable fitting onesie was from Aunt Alex and everyone loved it!

I have to admit I thought I was going to be a lot more terrified and nervous than I actually was on his first night home. I just think I was always worried and checking on him even before all this happened. I also keep my PA's words in my head "he isn't in heart failure anymore." I was mostly nervous about his meds! I have 3 charts that I follow for the drug, time, and dose. I only had one mess up the first night! Not bad! I called my transplant coordinator, Kara, right away and she informed what I had to do. She is our lifeline. Beckett gets meds at 0000, 0600, 0800, 0830, 0900, 1400, 1600, 1800, 2030, 2100, and 2200! Now a week later and it is second nature. It gets better over time. Eventually he will only be on a few or so I think.

First night and day in Beckett seemed much happier being free and out of hospital. The next following day he started "talking" again. I was so excited because he was doing that right before all this happened. My days go pretty fast because of all the meds I have to give. He is so good at taking them, however it always seems that he gets into a good sleep when a med is due! Smart little fellow! On Saturday Papa, Aunt Angela and her boyfriend came to see Beckett. They brought us lunch. We put Beckett in the mama roo and he started talking to the little monsters on the mobile! We were laughing and realizing that he can really see now. We then placed him under his play mat and he was talking and hitting and kicking the animals! He does get irritable and it is hard to tell if he is just being a baby or from the weaning of his sedative meds. Sunday my dad gave us play by play of the Superbowl. Congrats to the NE Patriots and #47 who is a high school alumni! So proud to be a SAINT! Monday we went and got Beckett's labs taken, so they could have the results by his appointment on Tuesday. They got him on the first poke and Beckett did great with only one little cry. On Tuesday, we had his first outpatient appointment! He got his vitals taken, which were all within normal range. He now weighs 11.31 and is 23" long. He got an EKG and an ECHO done. He was in great spirits for all of this!!! Kara and his Dr. saw him and thought he looked great and adorable! The only change was the weaning of his sedatives. They are spreading it out a little longer to see if it helps with his irritableness. He still gets a rash and we are still not sure what causes it. Other than that he checked out great that we  don't even have to go back till Monday!!! Great news!!! My baby is truly a miracle! After his outpatient appointment, we had to go back to the 10th floor to have the PA remove the rest of his stitches. Everyone on the 10th floor was so excited to see him! I love visiting everyone on the floor. I keep praying for everyone on that floor. They each hold a special place in my heart. Oliver is still there and I pray for a discharge soon! The baby girl I talked about before is now on the transplant list. I pray for a heart for her and her donor as well.

All the tshirts are starting to come in and we are loving the pictures of people in them! I am trying to reopen the t shirt campaign because I have gotten a few t shirt requests after it has closed. I will let you know when it re opens!  Thanks for all the support!!!

On Wednesday, we got ready for the arrival of Auntie Alex! I picked her up from the airport. Beckett and her were super excited to reunite! On Thursday, Joe spent the day with us!  Joe and I ran a few errands then we had a pj party and rented a movie (I slept through it). I got up early Friday morning, to get my dad, sister, and Grace from the airport. I was so excited to see them. I haven't seen my sister since August!!!! And I was meeting my niece!!!!

 Once I got them, we stopped at House of Blues. The night before I got word that Live Nation, who owns House of Blues, was giving Beckett a generous donation. My work family has been beyond supportive. They have touched me and have kept me strong through all of us. True fans of Beckett! I cannot thank them enough! It was so amazing to see some co workers and hug them. It filled my heart up! One server made some special things for Beckett, which you will see soon in the next blog! After that great visit we headed back home. We had to stop by the Pharmacy because the only GLASS refrigerated medicine fell and broke all over the floor. Since it is not a "refill" it is not covered by insurance. The lady was so scared to tell me how much it was. I said I know it is $800. Trust me I asked when I put the order in. It is a medicine he has to have...Lesson learned! My sisters are teaching me an organized system to help with all of his medications. Today has been a photoshoot of these ADORABLE cousins!!!!!! Take a sneak peek!!! WARNING: utter cousin cuteness ahead!