Paitn did extremely well on Monday. We arrived at 7am and she was in and ready to go about 7:45, which is way better than back in March. She came out about an hour later, laying down watching TV and eating a purple popsicle (which she persisted on calling blue). Now I think Tyler understands how easily it is to spoil her - she is so used to it by the CHB doctors & nurses!!

She is rejection free - Dr. Almond said that her heart looked fantastic, which is a huge sigh of relief. The only thing we are battling now is her gaining weight. She weighed in at 10 kg, which is 22 lbs even! It's the heaviest she's ever been; however, putting a G tube (which is a surgical port directly into her stomach) is on the table for discussion & according to Heather (nurse practitioner) if her weight doesn't increase dramatically w/in the next 3 months, we are probably looking at a G tube for extra calories. It stinks b/c as of 8/17/09, Paitn has been eating like a horse - I can't feed the girl fast enough. She eats great meals, but is constantly asking for yogurt, a banana, pudding, or something else throughout the day - at least once an hour, if not more! I guess we will see what happens and obviously do whatever is best for her to keep her safe and healthy.

Ash

This summer has definitely been eventful for Miss Paitn and myself. Turning two takes on a whole new set of dynamics and personality traits that sometimes causes me sigh or scream... inside my head of course! Miss lil' independence is in a world of her own sometimes and although it's trying at times, she usually causes me to smile and think to myself - Gosh, my daughter is just like me!! She is stubborn, yet super sweet, sometimes shy, yet a forceful chatterbox, will quietly play, but then will run around w/ her hands above her head dancing and singing at the top of her lungs. She's too wonderful... honest! So, we are now coming up on her 18-month biopsy September 14th and am really not looking forward to going down. The further out we get from doctor's appointments the more sorry I am that she will continue to go back for the rest of her life. She's a trooper though and considering we will be in good company Sunday/Monday, I'm sure we will have fun and things will come out extremely successful.

I'll post the results... keep your fingers crossed everyone!!

Ash

I tried to stand up at the Comedy Show/Auction Saturday night and give a "speeech/thank you" but was shaking and almost crying - an utter mess to be honest with you! Thank goodness the comedians were so great, and I'm pretty sure everyone forgot all about my little debut.

I want to thank all of the volunteers who have ever helped with any fundraiser we have done, whether it was making phone calls, selling any type of ticket, helping get auctions, getting sponsors, or anything else that I can't think of off the top of my head right now. You all have helped to make Paitn's life easier... and mine as well. So, thank you very much.

Second, I want to thank my parents for helping fundraise - my mother the brains and my father the bronze. Saturday night was one of the funnest nights I've had in a long time... and boy did I laugh. I was practically bent over laughing the entire time Chris Brawn, Carolyn Plummer and Kelly MacFarland were up on stage. Each of them did such a great job in their own way that the entire audience barely had to time to breathe in b/w laughs... it was great. My parents have been such a huge help with the fundraising and my mom actually put so much work into this fundraiser that I'm anxious for her to have a break and be able to just be Paitn's Tessie (instead of Grammie) again. The bond that Paitn has with Bumpa and Tess is so cute and we're all excited for summer and family fun.

Third, I would like to specifically thank Nicole or "Auntie Cole" as Paitn is starting to call her. Over a year ago while we were down in the hospital, Nicole was at home constantly researching for a way to help support Paitn financially for a long time, hopefully forever... and that's when we decided to join COTA. Nicole gave a great explanation of COTA and what it all entails Saturday night, and I hope that she answered any questions that anyone was having. COTA is our trustee... we pay our bills and if they deem them as being transplant-related, they reimburse us. It's a huge burden that is lifted off of our shoulders, especially when we are in and out of the hospital sometimes. Boston is not cheap. So thank you to Auntie Cole and to "Unckie" Reggie (we're working on that Reg, promise) for also helping and for giving up your wife so often to help Paitn. Plus Nicole, you and Paitn are bound for life because of your donating blood to her... what a great relationship you will have.

So... Paitn right now is wonderful. We went to Portland to have lab work a month or so ago and we have the whole month of June off, plus most of July. The longest break (pending she doesn't get sick) we have ever had and we are so excited. We won't go back to Boston for awhile and are definitely enjoying our time off. So, the postings will be more spanned out as we are going to try to continue our path toward "normalcy" and hope that Paitn continues to stay healthy.

Update on Paitn:

Weight: 21.6 lbs

Favorite pasttimes: Coloring, dancing, and singing "Twinkle Twinkle, "You Are My Sunshine," "ABC's" and many more songs

Favorite Color: Blue

Favorite Pattern: Yes, she has a favorite pattern! It's polka-dots.

Favorite Foods: Toast & Cheese (also known as Grilled Cheese), Oatmeal, Bananas, applesauce

Favorite Book: Let's Inves-Tigger-Ate (Pooh & Tigger)

She's becoming quite the little girl and really learning who she is and what she does and does not like... it's amazing. I couldn't ask for anything more being a mother... hopefully soon there will be more updated photos that Aunt Nita has been taking at every event possible... so please continue to visit Paitn's site!!

Sincerely,

Ash 

Happy Birthday - Happy Birthday - Happy Birthday to our beautiful girl. Two years old today... amazing! James and I look at Paitn and are just so happy to have her in our lives. She's a breath of fresh air and a complete joy to be around.

Paitn had lab work yesterday (routine) and all came back well. She is staying extremely perfect when it comes to her immune system and we are thrilled to not have to constantly go back and forth b/w doses. We do not have to go back to Boston for another 7 weeks and are hoping that the appointments continue to get spaced out. Her weight is up, 21.6 pounds and she is holding strong there!! WOOHOO!! Our little girl is growing up...

Ash

Phew! 2009 is already cruising right along. We have had some great fundraisers so far, and I am especially looking forward to the Comedy Night/Silent Auction in June (see info from home page). Great comedians (female at that...) and amazing items - the list is fantastic! We are all looking forward to a fun night to kick off our summer!!

Last year's May was quite hectic and busy. I remember that we were supposed to be home before my very first Mother's Day; however, Paitn ended up having a few extra cells on her biopsy and we ended up staying in New Hampshire until May 13th. James had taken us to one of most  favorite hotels - Kentville by the Sea - in Hampton Beach, where we spent time walking on the sand, taking beautiful pictures of the ocean, and having a great Mother's Day weekend. She had her biopsy on May 12th and that night we were told we could go home... we stayed on Route 1 (we were on our back from Boston and Paitn's biopsy) and stayed one more night before heading home. It was a fantastic homecoming. People were lined up along Brunswick Ave in Gardiner and then a ton of my family were at my grandparent's house by the park. It was a tearful and joyful moment - we were so thrilled!

Then it was time for Paitn's birthday and the move to Pittston (GAT and Uncle Nellie's house). We had a small birthday party for Paitn, just James and I, because she was unable to be around a large crowd at that point. We celebrated later in July w/ a HUGE BASH!! The move to Pittston took a few days, but we enjoyed the summer out there and appreciated the Gosline's hospitality as well as Uncle Jay and Aunt Nita's understanding (they were our landlords in Gardiner and were fantastic throughout our stay in Boston when Paitn was really sick). Thank goodness for family - that's all I have to say!

Paitn had a birthday party this past weekend and enjoyed being around all her cousins, although she wasn't feeling all that great (and now all three of us are sick!). The girls all had fairy wings like Tinkerbell and the kids go to play outside in the HOT HOT sunshine! It was wonderful... well, Paitn's bedtime is 10 minutes past due. Just wanted to give an up date (Boston trip on Thursday - routine ECHO, etc) and we hope to see all at the Comedy show.

Ash

Okay... first of all I would list Paitn's medications and doses:

Tacrolimus/Prograf (Immunosuppressent) .4 ml 3x day
CellCept (Immunosuppressent) .8 ml 3x day
Atenolol (SVT Controller) .05 ml 2x day
Valcyte (HSV) 2 ms 2x day
1/2 baby aspririn (Profylactic for coronary artery disease) 1x day

Paitn weighs 20 lbs and is about 32 inches long. Her Echo results were great - normal function. Her clinic went really well and Jodi and Dr. Singh thinks she looks great and is doing well. They are no longer going to keep her at a high immunosuppression - she used to be around 8-10 (level), but now they are going to try and control her immune system to keep her arond 5-7, which is great. Less medication and a stronger immune system. Her immune system will always be about 70% verse a healthy child who is 100%.

First thing when we got to Boston, Paitn had a neurological exam. The only reason for this is because she was on the Berlin Heart and it was part of the research study that needed to happen about 1 year post transplant. Dr. Ware was extremely impressed w/ Paitn - who surpassed all the 2-year old expectations and she even tried some 3 year old stuff w/ Paitn... some things she did fairly well with.

At 10am we met w/ Megan Brann - a nutrionist - who was happy to hear that Paitn's weight was up, that we are continuing to offer her a variety of food and that we allow Paitn to help us cook/bake so she can feel different textures and have fun w/ it. Paitn is still allowed to pretty much eat whatever she wants whenever, but right now is mostly on a yogurt/cracker/pasta kick. She loves yogurt - it's her favorite thing in the world right now!! Megan advised James and I that after doing the bone x-ray of Paitn's hand a few weeks ago, she is about 6 months behind in growth. At first I was extremely concerned, but both Megan and Jodi (nurse practitioner for heart transplant) advised me that it's not that alarming, but we need to do whatever we can to ensure that her bones are going to grow correctly so that she can grow to her potential. Worse-case scenario, Paitn will always be on the petite side - which coming from someone who eats a french fry and has an extra love handle the next morning, it might not be a terrible thing!

So... moving on. Paitn will start on a Vitamin D supplement on Monday because her level was a little low. This has to do w/ her a tad behind in growth as well as her medications as well as living Maine and being stuck inside for 6 months. Hopefully she will not have to take this forever, but right now my little peanut LOVES her medications, so it's not a huge deal to take one more. This supplement is just like another child taking a Flintstone - it will be once a day and she can take it whenever.

We will be going back to Boston in 6 weeks and have to repeat labs on Monday down in Portland for some extra nutrition levels.

But, overall, Paitn is doing extremely well. She loves daycare and is excited about the warm weather and being able to go outside and play. Hopefully she will continue to gain weight and we can get her out of 12-18 month clothes and into some "big girl" clothes!!

Last year around this time Paitn was discharged from Children's Hospital Boston after being an inpatient for 70 days (not including the 36 hours that we spent at Maine Medical in Portland). My mom (known as Tess now to Paitn) and GAT came down to bust us out of the hospital and take us to the quiet and wonderful home of my Aunt Mary and Uncle Ted.

I remember when we got to New Hampshire GAT had to turn around and go back home (so thank you for making the long day trip), but my mom was going to stay for the remainder of the week to help all of us get situated. Aunt Mary had warm soup ready for us and it was too good to be true. Paitn was a little shy at first - completely normal - but after only a short time she was crawling around the house as if she owned it!

James and I want to thank Aunt Mary and Uncle Ted for allowing us to stay in your home for as long as we did. Paitn was on 12 oral medications and 1 injection at that point and it was a long road ahead. I would draw up over 140 syringes each Sunday while Aunt Mary and Uncle Ted entertained Paitn as best they could - and we would give her the medication and she would throw it up. I would re-draw and give her 2 or 3 and she would throw them up. It was a lot of work, but once I figured that Paitn liked to chase her medications w/ water things became a lot easier. Every morning Aunt Mary would always put down a blanket for Paitn to play on (and throw up on just in case) and we would dance, listen to music, have breakfast, lunch, and dinner at the table like a family - it was great. It was such a memorable time and a beautiful time to finally be in a home w/ family and out of a hospital.

So - thank you, from the bottom of our hearts - Paitn thrived being at your house and we definitely enjoyed being there as well. We love you and were so happy to see you at the dance the other night! It meant a lot to us that you came all the way... even though it was probably just to see the sweet red-head shaking her booty!! :)

James and I took Paitn to Boston yesterday for a long day of exams... I'll post tomorrow or maybe tonight about the details. I really just wanted to honor the D-DAY for our little girl and to thank two of the sweetest people ever...

Uncle Ted - almost ice cream weather!! (Although anytime for ice cream is a good time!)

James, Paitn, and I got home late-late Friday night from Boston. She has been doing fairly well - back at daycare, but still coughin a ton and quite "junky." We are definitely enjoying nicer/warmer weather and hoping to get outdoors very soon to breathe in the fresh air.

She had lab work on Monday, which everything came back as good and the next appointment will be April 7th down in Boston for a routine Echo, EKG, clinic, etc.

Hope to see you all at the dance Saturday night...

Well, first I should say "Happy Anniversary" to Auntie Nicole and Uncle Reggie... married for 4 years I believe... hopefully.

They say that everyone has that "perfect moment" at least once in their life. A time when everything and anything felt right and all dreams come true. It's amazing how quickly you can forget that miracles are possible and dreams become reality when you are sitting in a hospital room, day after day, watching your child teeter b/w life and death. On the outside she looks happy, healthy, and perfectly normal, but on the inside her body is struggling to hold onto the one thing that can keep her going--her heart.

St. Patrick's Day in 2008 was a wonderful time for Paitn and myself. James had decorated the room --inside and out--and had bought Paitn necklaces and a headband to allow us to celebrate the holiday in style. He was home working, but I dressed her in a little green shirt (more like a dress on her) and decked her all out in green. W/ her blue eyes, long eye lashes, and beautiful red hair, she was a sight to look at and everyone in CICU enjoyed her presence. We had a wonderful day, but some of me was aching inside because I wanted a new heart for her, we needed a new heart for her, and that day seemed like it would never come.

I remember before Dr. Fynn-Thompson left (her surgeon who did the Berlin Heart) for Africa (11 days he was gone to be exact) he said, to Paitn, that he hoped she received a heart while he was gone, but he would not be heart broken if she waited until he came back. James and I talked and thought that in an all-perfect world, wouldn't it be wonderful if the day he came back a heart arrived. A desparate hope, but in the CICU that is all you have sometimes.

Dr. Fynn-Thompson and other doctors and nurses arrived home around midnight on March 18th 2008. Paitn and I went through our usual routine that day, and I definitely felt a little more at ease and comfortable knowing that her surgeon was back and would be here if, and when, a heart became available.

Around 1pm that day Dr. Fynn-Thompson came into the room to see how Paitn was doing - making the rounds. Her nurse, Kristin, said that he should witness Paitn's ability to stand up and dance while on the Berlin Heart. She "shook her booty" a little and he smiled. He smiled and said, "Okay, you probably should know anyway so I'll tell you. I'm working on a deal for Paitn." A smile came on my face and an excitement tickled my tummy, but I was also nervous that this may be a false call as well (like on March 4th). He said that it was extremely soon, and I shouldn't even call and tell James yet and that he would be back in 45-60 minutes to let me know. 45-60 minutes at CHB definitely is more like 2-3 hours, but it was okay because I felt hopeful and began to feel and believe that this was Paitn's perfect moment.

Around 4:30pm I got to call James and tell him and it was amazing. He was excited and nervous as well, but left in hopes that he wouldn't have to turn back to Maine this time. He arrived and we were so happy to finally see a means to an end - see a path that would lead to home.

 Our little girl would be receiving the most generous gift anyone could ever be given, and it was from a family that has never met her, has no idea who she is or how old, what she has been through or even what that gift truly meant to her and our family. We were so thrilled for Paitn and had no worries about her surgery whatsoever, but we definitely were humbled in those last few moments w/ her before going into the OR. To know that another family was dealing w/ a loss of life and we were being given life back, was a true miracle and one that came w/ so many emotions that it almost too difficult to explain. Someone wanted to save Paitn and give her back to us and for that we will forever be truly grateful. Paitn's heart will always belong to the little girl or boy who passed - an angel that left their wings behind for Paitn.

This past year has definitely had its ups and downs. We were home for a few months, in and out of the hospital for a few months, had a nice calm and quiet winter and then ended up here--at Children's--on Paitn's true one-year anniversary. Paitn's journey has been so long and difficult, completely unfair for an innocent child to have to endure, but to see where she is today compared to the start she had back in January, is such an inspiration. W/ her new heart came new obstacles to jump over, but has allowed for us to continue forward w/ our little girl, which is all we wanted in the first place.

Paitn had her perfect moment--her miracle that we were all able to witness--and she now has her perfect heart. We are looking forward to moving on and continue celebrating all of the amazing wonders that children give us day to day. She is a heart transplant surivivor and that, in and of itself, is beautiful...  

Sincerely (and calling all angels),

Ash, James and Paitn Marie

So... here we are. One year after finding out the GREATEST news ever - Paitn was about to get her new heart. So, let's first talk about the biopsy...

The biopsy for her one year did not go all that well. The doctor that was supposed to do her biopsy and catheterization was actaully on vacation this week, which means that Paitn was going to be double-booked. We could either cancel the appointment or come down and hope that she got in as early as possible (which mean anytime b/w 8am and 4pm). We came down because we were so excited about it being her one-year biopsy and had great plans to celebrate after for many weeks and months!

So, Paitn usually gets a "cocktail' when she goes into her biopsy (Versed, Ketamine) and never needs a breathing tube. It's a 45-60 minute procedure and we end up leaving Boston 4 hours later. Paitn is not allowed to drink or eat anything appx. 6 hours prior and usually does okay w/ it. This time though, Paitn's biopsy was pushed to 2pm (usually she is in at 8am) and was NPO (no food or drink) for 12 hours! She was miserable. They took an x-ray, did an ECHO (normal function) and EKG (normal) - the x-ray showed a little collapsing in the upper-right lobe (she has had this problem before), which is basically some junk just sitting there that chest PT, nebulizer treatments, fresh air, and crying always solves.

The problem is that the breathing apparatus that they used during the biopsy was different from ones that she has normally had - this one was meant for short-term use and not as evasive, but it does not expand the lungs as well as a regular breathing tube, which Paitn definitely could have benefited from. So... long story short - Paitn came out of her biopsy w/ low saturation (88-92), fast heart beat (130-150) and fast breathing... and she kept getting worse.

Tuesday morning she went on oxygen that helped a little, but we feel as though she needs to get some fresh air, walk around and get that junk moving so she can clear her lungs and eventually get back to normal.

Anyway... good news about the biopsy! ZERO REJECTION!! Her pressures were perfect and her biopsy showed good results. So there is an upside to us coming down here anyway and getting this over w/.

Time to go back to see Paitn and James (probably watching "icky ouse" or basketball (which Paitn can say now and usually requests when "icky ouse" is "sleeping or at work" (that way James and I get a break from Toodles and the rest of the crew). We are hoping to go home today, but will probably be here tomorrow which we did not want to happen - actually be in Boston for her one-year post transplant date would have been nice if we were out celebrating, but not nice sitting in a stuffy ol' hospital room.

I'll post either tonight or tomorrow.