Michele came to visit and whisked me away to dinner and to get our nails done today! It was a welcome break from inside the hospital. Julian is doing great – looks like discharge is probably Monday to give another day to wean him off the oxygen. Other updates:
- Julian is now eating and holding down bottles.
- He got his left hand IV out
- They removed the dressing over his incision
- He can hold his feet again which he loves to do!
- And….he is getting better acquainted with his monkey
Thank you to Melanie, Grace and family for the chocolates and Elmo balloon! Another thanks to Sarah for passing along a little stuffed bandaged heart, which we will use to cushion the car seat straps on Julian’s chest when we take him home. Lynn gave us a huge gourmet fruit basket to keep nourished and finally three women from the South Shore “HanDS together”, a support group for babies with Down syndrome and their moms, stopped by and gave us a care package.
The care package got me thinking about how much support there is out there for children with Down syndrome and their families. One of the things that helped me in the beginning after Julian was born is another woman’s blog site that inspired me to start one of my own. My doula Teresa sent the link back in July. It tells the story of the birth of Nella, a baby who has Down syndrome. I cried a lot when I read it because I had a very similar experience. I plan to finish my draft of Julian’s birth story and share it on this blog sometime….when I am ready.
Hello Gretchen, I have been thinking of you and wanted to share a very inspiring blog site that I have been following from it’s conception.It is by a mom who lives in FLorida and her name is Kelly. It is powerful and simple all at the same time. She is also a photographer who has had no formal training and her pictures speak words. I think you will find inspiration in her words. I would suggest that you go back to the beginning of the blog…with the featured story of “Nella’s Birth Story“… Let me know if you find it helpful in any way 
Much Love to you,~Teresa
What a perfectly smile-inducing post! We’re all delighted that Julian’s getting back to his old self and that you’ll be home soon. Congrats to all of you for making it through some very hard days.
You are all making it through this surgery, day by day, and we are amazed and so glad, congratulations for all the steps forward, congratulations little Julian, on your newly mended heart! How wonderful. Thank you too for sharing your first days. It is a gift to have another person’s story that is honest and eloquent, and true. They are beautiful words, all of them, and your family will be so proud of them, and proud of mom and dad, Susanna, and for John and Sophia (both at a Celtics game) and G, M, N.
Katrina Steinmetz Soltero Great news. I like the monkey outfit!
January 8 at 10:28am · Like
Lori Rizzo Yay! He is awesome!
January 8 at 10:32am · Like
Tracey Gibbins Krumroy Awesome. We have been praying fir you guys.
January 8 at 12:01pm · Like
Jackie Underwood Cunha So very happy Julian is feeling better! Much love and prayers.