RILEYRetrun to 22q Stories
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I have high blood pressure and am in my mid-thirties so I was considered high risk when I was pregnant with Riley. I had more sonograms than I can count so when Riley was born in October 2010 at 9:15 pm I was not expecting anything to be wrong, other than a possible kidney issue (her kidney’s were dilated in the womb, but they are totally fine). Due to the fact I had gestation diabetes, I was having a hard time keeping my blood sugars stable, and unfortunately I ended up getting sick right after delivery.
In hindsight, I see that as a blessing. We sent Riley to the nursery, which turned out to be a good thing. While feeding her, the nurse saw Riley’s O2 drop, which led her to call the Pediatrician right away. Because the Pediatrician was called so early, she heard a “clicking” in Riley’s heart, which lead to her calling in a Cardiology consult. The Cardiologist did an ultrasound of her heart done, which led him to see several things wrong with Riley’s heart, the biggest issue being a moderate to large VSD. The VSD was a trigger for both the Pediatrician and the Cardiologist to have Riley tested for 22q. This was all with in the first 36 hours of her life. Riley was born on a Thursday night, and by Wednesday of the following week we knew that she had 22q.
We had never even heard of 22q (or even DiGeorge!). My husband is a scientific man and very much a researcher, so he did tons of research which was not a good thing at that time as there are so many unknowns with 22q. Riley was in the NICU for 3 weeks, before she was transfered to our local Children’s Hospital as it was determined that she would need a g-tube and a fundoplication to help with her swallowing issues and reflux. Nothing could prepare me for my 3 week old baby to have her 1st surgery, but somehow we managed to get through. We were sent home a week later with out most precious cargo, both of us a bit unprepared on how to manage this tiny baby with her special needs.
What followed included several stays in the Cardiac wing of the Children’s Hospital due to respiratory infections, several broken Mic-Key’s (we learned how to replace those pretty quickly), several ER visites, every other week visits to the Cardiologist and Pediatrician and finally open-heart surgery at 4 months old. Luckily for us Riley is party of the Babies Can’t Wait program that the state of Georgia provides which has helped us in the form of a great social worker, speech therapist and physical therapist. Riley has been delayed in some of the big milestones that we delighted in with our older daughter. You try so hard not to compare, but you really can’t help it. Fortunately my mother-in-law moved down from Massachusetts temporarily to watch Riley since both my husband and I work full time and Riley’s immune system just wasn’t up to being at a day care.
The first year of her life has been an eye-opener for not just her dad and I but also for our friends and family. We realize what a wonderful support system that we have in our friends and neighbors especially since our families live in Massachusetts and New York. We cherish every little thing that Riley accomplishes probably more than we would have with her as our 2nd child. Our older daughter, Zoey, is an amazing big sister who just wanted to hold the baby and she learned how to manage to do that even when Riley was on a continuous feed through her feeding tube.
Today at 18 months old Riley has accomplished so much. She was finally able to lie on her stomach, and roll over. She has gone from sitting up on her own, to crawling and just now starting to take some tentative steps. She is eating all her foods via mouth, although she she has problems aspirating thin liquids, but I have hope that she will accomplish that too. She knows what she wants and can communicate that even though she has not yet developed the language skills quite yet. Riley is now in full time day care and we were so lucky to have a teacher with hands on experience with g-tubes. We have many doctors appointment (Pulmomoligist, Immunologist, Cardiologist, GI, Pediatrician), more than I have ever wanted to see, but they are wonderful and so well trained to handle not just my daughter, but me as well. I am looking forward to all of the new things that Riley will accomplish and trying very hard not to dwell on all of the unknowns. There are days when that is easier said that done, but we certainly try. I know so many people have it worse than we do, so I try not to give up on hope.