Our Letters of Hope

If you can, if you will - IMAGINE…..

Watching your daughter's face as she tells you she is expecting a baby (only you and she know she's been trying for over a year). Enjoying the banter back and forth with her husband as you insist the baby is a girl - after all that's what Mommy wants. Feeling some sort of sixth sense from the moment your daughter tells you her news that something isn't right (and only confiding that feeling to a trusted, chosen few). The day of the first ultrasound finally arriving….. and being naïve enough to believe that the biggest problem that day will be whether or not the baby will cooperate as you determine boy or girl.

Having dinner with your daughter…. And having her tell you and her sister calmly - 'The doctor called today and there might be a problem with the baby's heart. Something about a chamber and I have to get a more detailed ultrasound". Seeing your daughter crying in the passenger seat of the car as they return from the ultrasound. Hearing the words Hypoplastic Left Heart Syndrome and finding out from the Internet that it's the most severe of heart defects.

Hearing the Pediatric Cardiologist give you your options for this precious baby - and yes, she is a girl…… 1) Three-staged surgery for a palliative repair, allowing your baby to (hopefully) live more than the couple of weeks she would live if nothing was done. 2) Heart transplant - which brings a whole new set of issues. 3) Do nothing…. Take your baby girl home with you and love her as hard as you can for 2-3 weeks. Then she will very peacefully pass away in your arms. Option 3 isn't even an option; you go with the surgical plan.

Then - phase 2 - IMAGINE….

Leaving to go 4 hours away from home so your baby girl can be born at the very best facility in your state. Knowing you won't get to hold her when she is born but being promised that 'if she is stable enough' you can get a peek at her. Seeing your baby for the first time, seemingly attached to enough wires and tubes to launch a rocket. And loving her, oh my gosh loving her as if you've known her forever. And as she is wheeled off to PCICU telling her FIGHT BABY GIRL, FIGHT HARD.

2nd surgery - You made it through the first nine week roller coaster. Your baby was born in August, you bring her home for the first time two days before Halloween. She is still the size of a newborn. She had open heart surgery at one week old. Because of reflux issues (common with heart babies) she has also had Nissen fundoplication surgery and G-tube placement. You bring home a pharmacy with your baby and you have learned to prepare 9 meds for the morning and 9 meds at night. No matter where you are, you tube feed your little one every 4 hours.

You are just about comfortable with things at home. Now it's time for a heart cath (2nd stage surgery is done around 6 months of age). She is still the size of a newborn. You travel again, 4 hours there and 4 hours back, you pray as your little one is in the cath lab. She is kept overnight because she needed so much medication to sedate her, she now is forgetting to breathe - she has a very high tolerance to meds, you see, because during the first hospital stay she became addicted to Morphine and required Methadone to withdraw. You return home; you get a call the next day telling you her surgeon has cleared his calendar because she needs surgery - NOW.

One week later - the day you thought she might be discharged, she is instead rushed back to surgery because of a wound infection. She aspirates as she is extubated…. She now has pneumonia. She doesn't even look like a baby - she is again 'knocked out' because if not given an enormous amount of meds you will find her fighting and kicking instead of sleeping. As they pound her back and do everything possible to clear her lungs and keep her alive, she looks like a tiny rubber doll. Her color is pasty and her skin is gray. Two weeks later she is almost finished with her IV antibiotics and they say the word HOME…. You are afraid to get too excited… You are out of money and out of Family Medical Leave and you are worried about your job in addition to your baby. But she is alive and better and that's all that really matters. And you do get to go home!

TODAY….

Your little girl has exceeded everything you (and family, friends, and people you've never even met) ever hoped and prayed for. She will be 6 on August 26th but her 6th birthday will be spent at MUSC Charleston SC because she will have her 3rd open heart surgery August 21st. You will have her birthday party early this year. She is tiny, spunky, and beautiful. Her scars are barely visible and you remember the first time you saw her rubbing them after her bath. What was she thinking? You look at her and try not to think about August. And you pray… Oh God you pray… And as you pray for your own, you pray for the others - too many others who struggle with various CHDs. Sadly you must add parents to your prayers… parents whose little heart warrior lost their struggle and are now angels.

I am Ashlyn's proud Nana and the author of this letter. And to sum it up - in the six years since we first heard the term CHD applied to our own lives, I've never cried more, prayed harder, laughed more loudly, or loved more deeply than Ash has shown me how to do. As you go from website to website checking on these little fighters, you will notice something. Their eyes…. They all have the most incredible eyes - huge and all knowing. I truly believe that heart babies have looked into the eyes of Jesus as He held them when no one else could. I thank God every day we were chosen to be Ashlyn's family and receive the blessings that only a 'special' child can give. I love you Ash.

Love, Nana