Discharged!

57 days after being admitted, Gabe is discharged with the diagnosis: status post repaired AVSD, reflux resolved with Gtube feeds/nissen, subglottic stenosis, and sleep apnea. His heart is fixed and we just have tube feeds, oxygen at night and Prevacid, Lasix and Captopril. I couldn't be happier. I feel like Gabe was born today in a way. It's so nice to have him at home without having open heart surgery looming over us. I am so thankful. Thank you for everyone who sent cards, made us food, gave us gift cards, etc. We couldn't have made it through this without you. Thank you also for everyone who walked and/or donated to Team Cash's Buddy Walk earlier this month. Gabe's team raised over $11,000 and ranked third in donations for the Cincinnati Tristate area. And a huge thank you to Kelly and Ryan Shrout: Kelly organized the Buddy Walk and stayed with Gabe during her downtime as a nurse on his unit, and Ryan helped organize the Buddy Walk and donated some of his personal belongings to a raffle in Gabe's name. Gabe will definitely be at the Buddy Walk next year. Many have asked how we have gotten through this and the answer really is...because we had to...there was no other option.

Here are some things that made it easier:

1. Grandma's...they are wonderful and allowed Justin and I to have breaks from the hospital guilt free.

2. Coworkers...I work with great people and have a wonderful manager who allowed me to have an extended maternity leave to be with Gabe. Not all jobs would have been as understanding. They wear bracelets that say "Gabe" on them to show there support. They are all a great people.

3. Hollistic Health...they came by the room and gave us massages...enough said

4. Blogging....This blog has been therapeutic. I originally started it as a way to keep in touch with family and friends regarding Gabe's medical status so I wouldn't have to repeat the same story over and over. Turns out I've met a great network of other Down Syndrome mothers who have "been there, done that" and know exactly what it is like. It was so helpful looking at pictures of their children during their surgery and recovery and comparing it to the super cute pictures of their kids now.

Things I've learned:

1. Advocate for your child. Even if they do end up talking about you in psychosocial rounds b/c you are so upset about the wrong ET tube being placed in your child, you have the right to let your strong voice be heard and not back down.

2. Tell the doctors, RN's and therapists who are extra good with you and your baby that they do a great job. Nothing like positive reinforcement to lift someone's spirits.

3. Never complain about the cost of insurance...we'd be bankrupt without it.

4. You know your child best. Speak up when something isn't right.

5. Talk to other families. Realize that you do not have the sickest kid in the hospital. Remember how lucky you are to have a happy child who is getting healthier by the day.

6. The biggest and most important thing I've learned through all this is: DON'T EVER GIVE UP ON GABE!

When Justin was 19, he went to France with a class from St. Henry. While he was there, he bought 2 bottles of wine: 1 for when he got married and 1 for when he had his first child. The marriage wine has been gone for 2 years now. With me nursing in the beginning and then Gabe being sick, we never got around to drinking the baby wine. We are each having a glass right now and it is wonderful.