Claire Perie is one month old today! It’s hard to believe that our lives changed, in so many ways, just a short time ago. About two weeks ago Claire had her first cardiology appointment with Dr. Scott Fletcher. We went into the appointment knowing she most likely had an ASD and VSD. Unfortunately, after the echocardiogram we found out she actually has an AV canal defect. An atrioventricular (AV) canal defect is a large hole in the center of the heart. It’s located where the wall (septum) between the upper chambers (atria) joins the wall between the lower chambers (ventricles). This septal defect involves both upper and lower chambers. She will have open heart surgery in 3-6 months. As long as she continues to gain weight, eat well, and doesn’t show any other symptoms we can put the surgery off until 6 months. That’s our hope right now! It’s incredible how well she is doing. Based on her defect, the doctors expected her to be symptomatic. There is apparently some tissue in the AV canal that is “unusual,” but that is helping her tremendously. This past Tuesday we had a weight check with our pediatrician and she was up to 7lb, 1oz! She averaged a gain of an ounce a day, which is fantastic. She is an excellent nurser, and we started Daddy Bottle Time about a week ago (Adam feeds her a bottle around 10:15pm). We can’t get enough of this little girl. There are still hard days, yes. And when I think about the future I have to tell myself to turn my mind off. She is capable of so much, and has an overwhelming amount of support. The support has been astounding– I have received over 50 messages from acquaintances, friends of friends, and strangers. People sharing stories of family members and friends with Down syndrome, people offering their love and support, and countless people asking how they can help. Adam and I haven’t made dinner since Claire was born! I’ve had friends offer to run to Target, Costco, take the boys for a few hours, etc. etc. etc. I’ve made so many connections with moms in Fargo, Omaha, and across the country whose children also have DS. Our family is also beyond amazing–Uncle Paul flew in from Chicago to help for 5 days and the boys loved having him here! Last Friday Peggy and Fred flew into Omaha and took all three boys back to Fargo. They are watching them all week and then my family is watching them next week. I miss them terribly, but it has been so nice to have time to bond with Claire and appreciate her and her newness. The house is quiet, too quiet sometimes, and not having a strict schedule is crazy. Adam has also been utilizing this time to crash study and I’m so thankful for this. My dad and sister also made a quick trip (36 hours) to see Claire. This little girl has everyone wrapped around her little finger! I’ll admit, I’m not too in touch with God these days. I’m angry, and it’s going to take time to get back to a place where I’m at peace and know “everything happens for a reason.” But for those of you that pray, and for those of you who are thinking of us, here are some things we ask you to pray for:
- Claire continues to gain weight
- Claire stays asymptomatic
- Adam’s studying continues to go well
- Our stress and anger continue to subside
Sleeps through everything (including screaming boys)
Holds head up for seconds at a time
Has rolled over several times
Loves to eat
Loves bath time
Hates her car seat
3 Comments Add yours
She is darling. And so are your boys @ beautiful family. Trish you write so beautiful and thanks for sharing. Will say prayers for sure!!
Oh mama, I love reading your posts. Thank you for being so transparent with your feelings. You are such a strong woman, with a warriors heart. You and your sweet daughter have already touched so many hearts with your story of strength and love. You will continue to impact those around you. Being angry is a part of healing, it won’t define you. Just like your daughter having downs syndrome won’t define her. You shine so bright. I will continue to keep you and your sweet family in my prayers.
Trisha & Adam-
I’ve loved following your family blog since you started it when you were pregnant with Sam & Jack. You are a gifted writer, and I appreciate your candor about life and its struggles and joys. I just wanted you to know there are many of us thinking of your family. I don’t have the right words to say, and I don’t think there are any “right words”. Your anger, frustration, and anxiety for the future are understandable. Thinking of you and your sweet little kiddos:)