It is hard to believe, but it was 3 years ago today, at 6:30 am EST, that we officially learned that a heart was found for our baby girl. It is a strange, raw and polarizing set of emotions that take over in a moment like that. We were, of course, ecstatic because this is the moment we had been praying, begging, pleading for... we were nervous because we knew she was about as sick as you can be and there was a more than likely chance that she would not survive the surgery... we were also devastated and guilty because our blessing was at another family’s expense. 

It was 13 long hours before we knew the surgery was finished and she made it off bypass, 72 hours before we could begin to hope for long term success and another, LONG, 7 weeks in the hospital before we knew it was a smashing success and we were finally able to bring her home! 

Grace is our hero. She is stubborn, willful, spirited and extremely happy. It is this combination that has helped her soar and she has been through more in her 3 years than many people go through in a life time. In these past three years, she has toughed out 3 heart surgeries, 2 general surgeries, sustained life on life support for 10 excruciating days, had her lungs collapse no less than 10 times, dealt with plural effusions, been on dialysis, used up every ventilator in the CICU, she has had just about every random communicable disease out there, has numerous needle sticks sometimes as often as twice a week, takes the most disgusting medicine on the planet and she is still the sweetest, gentlest, happiest little girl you’ll meet. 

She is a true miracle and getting to watch her develop first hand has been a blessing to us. We are so grateful for the time God has given us and try very hard to never take it for granted. We will never forget our donor family, and we say extra prayers for them on this shared anniversary. 

Thank you all for being a part of our journey! These past 3 years haven’t always been easy and we are incredibly lucky to have such a wonderful support group to fall back on. 

P.S. Grace is still doing well. We enjoyed our first Mardi Gras season since she was born and she even got to see her daddy (and Pop and Papa and all of her uncles) riding on the floats. We “caught more than moonpies” as a friend said and all had to tough out colds for the week following, but have otherwise been doing great!

We have just returned from Atlanta with our little rockstar! She survived her long day (6 hours) of tests and a bad reaction to anesthesia... but received glowing reports on everything. Her doctor commented that her heart looked “amazing” and “is pumping beautifully”. All of her interior heart pressures are perfect and her coronaries are showing no signs of narrowing (transplant patients sometimes present with “coronary artery disease” as a form of rejection) and she received a grade ZERO on her biopsy (this is the best score)! Her kidney function is perfect, her liver function is perfect and her echo was perfect, too! We couldn’t have asked for better results.

Grace’s third birthday is this Saturday and it happens to fall during Congenital Heart Defect (CHD) Awareness Week this year. I can’t express what an important cause this is to support as CHDs are the most common birth defect in the US and nearly twice as many children in the US die from CHDs than all forms of childhood cancer combined. That being said, so many advances have been made in the past 20 years and more and more children are being given a chance at life. As these children, like Grace, continue to grow, more research needs to be done to help them live a long life as an adult. 

We are so grateful for the many blessings granted to us and want to thank everyone for your thoughts and prayers for Grace. Please also remember her donor family, who made all of this possible for Grace with their selfless thoughts during a difficult time. I know their precious one is watching over Grace as a guardian angel, and we think of him or her every single day. As the saying goes, God works in mysterious ways, and we have learned not to question the “why” and instead to embrace the “what is”. Sometimes this is easier than others... this is one of those easier times for us. 

It has been another great month here in the Moore household! We were able to enjoy the Christmas we were hoping for... one at home with no illnesses to be seen! Grace enjoyed playing with her new toys and being able to spend time with family. She is really running around and trying to keep up with the big kids and has finally started to hold her own. It was this time last year that Grace was in the CICU on a ventilator fighting for her life... again. This time last year we were worn out, beaten down and emotionally drained. We thought that was the life we had signed up for when we agreed to list Grace for transplant. We didn’t know that we could have a year as easy as we have just had. I can’t even find the words to describe the difference in our daily lives. Grace’s energy and spirit have bloomed and being able to watch her personality develop without the hindrance of weekly doctors appointments and lab sticks, without her feeling so miserable all the time, well, it is just priceless.

As many of you saw, the Press Register was kind enough to do a follow up story on Grace in last Sunday’s edition. We are so grateful for all of the kind things people have had to say in response. Thank you! 

Grace graduated from her feeding therapy as a model student!! She even ate the cookies and cake we had in celebration! She is eating and drinking so well and even will ask for food. I know that seems like something so simple, part of human nature even, but for Grace it is a huge step! She is drinking most of her formula by mouth and eating three meals and a snack during the day. Before the feeding therapy she would only drink water, eat chicken and green beans, lettuce and grapes and berries... that was pretty much it. Now she will try anything! She still eats those favorite foods (chicken and green beans), but meal time no longer feels like a battlefield. 

She had a GI appointment last week and he was pleased with her growth and weight, so we are going to continue our status quo there and as long as she drinks all of her formula by mouth we don’t have to run the pump! Yay!!!! So far she only does this about three days out of the week, but on the other days she is drinking most of it and only has to run the pump for a few hours ... compared to 10 hours a day (overnight while she slept) before.

Our next appointment in Atlanta is Feb. 8 and this one will be a big one for Grace. It is referred to as her “annual” and it includes a biopsy to check for rejection, a heart cath to check pressures inside her heart, an echo, a chest x ray and stomach ultrasound to check her gal bladder, kidneys and liver. Because Grace has horrible access issues (meaning her arteries are difficult to pass through), she has to be put under with general anesthesia for her biopsy and cath. Hopefully they will be able to do the bulk of the other test while she is still under/groggy so that the day won’t feel quite as long for her. There are always risks involved with anesthesia it is hard to knowingly had her over to the nurses as they take her down the hall, but we know she is in the best hands. Please keep her in your prayers on that day for a smooth day of tests and also for a grade zero biopsy report. Thank you! -- Helen

 Grace has been keeping us super busy this past week. Last Saturday she woke up without her MIC-Key button (feeding tube) in place, so Claude and I tried putting back in at home only to find that it had been out too long and required a trip to the ER. As we were getting her ready to go we noticed she was acting listless. She continued to act that way and fall in and out of sleep on the way to the hospital, so I was quite a bit concerned because that is very unusual behavior for her. When we got checked in the ER they did the usual triage and her temperature was EXTREMELY low (95.2 rectally). So, that was another red flag that something strange was going on with her. They drew several labs and did chest xrays and echos and a surgeon had to come and replace her button. The echo and chest xray showed everything looking okay, but her lab work showed all of her electrolyte numbers and white count were extremely off. So, long story short we had to spend the night in the hospital here in Mobile. At one moment they thought it was the start of something terrible and spoke of calling the plane from Atlanta for transfer, but fortunately things settled down after that. They let Grace go home the next day because things were looking better, but they still have no explanation as to what happened. 

We followed up with more labs this past Wednesday and again, things were looking better, still not exact, but better and by then Grace was acting completely normal, so the worry was gone. We also had to take her into surgery clinic so they could further dilate her g-tube site and they were able to put in the correct size, so that is completely fixed up. We also took her to Atlanta for an already scheduled check up this past Friday. In Atlanta they were pleased as punch with everything. Her labs looked completely normal, her echo showed "beautiful heart function" and they were happy with her growth and development. We tweaked her medications and even got to drop  one. For a little girl who takes 9 medications every day, most twice a day, dropping one is very exciting! They also gave us the "okay" to start her in school late this spring or early this summer. 

Her eating is s-l-o-w-l-y getting better and although her GI doc was slightly concerned with her height at her last appointment, it seems that things are beginning to level out in that area as well. 

Claude and I were so excited to be able to spend Thanksgiving here in Mobile, as last year we enjoyed a nice plate of take out in the hospital in Atlanta. Grace even enjoyed a bite of turkey (just about two bites actually! And a green bean!).  We always joke that Grace likes a holiday in the hospital, and we were excited to break tradition at Thanksgiving, please say a prayer for a healthy Christmas! Grace has been loving all of the Christmas movies and really is getting into the spirit of Santa and Baby Jesus (usually her play Santa arrives at her play Nativity set and visits the Holy Family). We are really looking forward to a nice, traditional Christmas season season filled with family and friends. 

Grace's next scheduled appointment in Atlanta is in early February and this will be her 3 year post transplant "annual" appointment. This is a big appointment filled with loads of tests and a biopsy. Thank you all for your thoughts and prayers, Grace continues to be blessed by them. Happy Holidays!

Helen

Another couple of months have passed and Grace is doing great! So far our experiences this year are night and day compared to last year at this time. She had a cold earlier this fall, but was able to fight it quickly. She has been so well in fact, that her transplant team re-started her on her second immunosuppressant (helps to fight rejection). This one works by lowering her production of white blood cells (which is why we had to stop it 18 months ago). She has been doing so well keeping her white count up on her own over the past 6 months that we feel she will continue to do well even on this medication, and it will add an extra layer of protection against the dreaded rejection.  

She had a visit with her GI doctor last month and we unfortunately have had some setbacks with her weight. Grace has gained less than 1 pound in six months even with her feeding tube. We don’t want her to grow too dependent on the feeding tube, so we are not going to increase her “feeds” through her button. Grace has over the past year eliminated several textures and foods from her diet. We have been keeping an eye on it, but it finally reached a point that we needed to address it. While this is a very normal behavior for toddlers of Grace’s age, Grace’s reactions differ a bit. Our current battles are: 1. Her body is trained to know that it can get its nutrients from elsewhere (the feeding tube), and that it doesn’t need food for nourishment.  2. Grace has had a whole lot of negative issues going on with her mouth over the past year (mouth sores, inflammation, infection and the ventilator tube). 3. She just isn’t as hungry with the feeding tube. 

To combat these issues we have started Grace on an appetite stimulant to make her hungry. This has helped tremendously already! Grace now will say, “I so hungry” and actually eats 4 small meals a day! We also started Grace in feeding therapy to work on some of her texture issues. Although Grace is a little young to be able to express to us why she is unwilling to eat things she ate happily a year ago, it is theorized that she associates all those foods with the pain her mouth was in at the time. We have had some slight success in therapy so far (we’ve only been twice) and I expect to see more great things come of in the next few months. 

We are also very happy to be able to say that Grace’s fabulous pediatrician persuaded our insurance company to cover Grace’s RSV shots for a fourth season!!! This is almost unheard of, and her transplant team didn’t think it was even a slight possibility. They are only going to cover her for five months instead of the usual 8 to 9, but we’ll take it! These shots are $3500 a month, so they would not have been a possibility without the insurance coverage and we can’t thank Dr. Hunter enough! 

We also have been staying so healthy that we are not total shut ins! Grace has been going on play-dates and to the park and to the store with me. We are fully stocked in Germ X (they make a fabulous lavender scented germ killer that is very moisturizing, so no cracked hands!), and use it before and after everything, I also carry Clorox wipes and a travel Lysol can in my bag incase needed. 

If Grace continues to do so well, we are prepared to start her in a 2K program in January. I have met with the director of the school we like and they just “graduated” a liver transplant patient and they are familiar with the precautions needed for Grace. The class sizes are small and the teachers are wonderful, so although I can barely even think about how it is going to feel emotionally for me and her (and Claude too!) to let her go a couple of days a week, I know it is what she needs developmentally. We are trying our best to make sure she can catch up socially/emotionally and feel that the exposure to other children her age on such a regular basis will have a tremendous impact. I would really like for her to be able to stay on track for 3K next year, and I am afraid if we don’t push her a little bit now, that she won’t developmentally be ready next year. 

We have an appointment in Atlanta in December for just a check up since they were unable to do her biopsy in August. If everything looks good, then we will not have to go back until February or March when Grace will have her 3 year post transplant check up! Oh how time flies! Thank you all for your prayers and support! Hopefully our next update in December will be full of more good news!

-Helen