Yesterday's cold and rainy day was the perfect backdrop for the events which occurred. It was like the sky was crying with us- grieving as we grieved. Today has been a brilliant and sunny day; a new warmth warming our house. Knowing the health status of our son made getting started this morning so much easier than many mornings past. We left for our appointment with the cardiologist feeling renewed and hopeful.
I wish I could say that the good weather was an accurate omen for our visit with the cardiologist, Dr. F. Sadly, we have learned that Miles' Trisomy 21 has affected his heart. Miles was diagnosed with a Ventricular Septal Defect. VSD is an "opening in the wall that separates the two lower pumping parts of the heart." Miles opening is large enough that surgery is required. Dr. F said we will probably be taking Miles to Charlottesville (UVA) by the end of July for the procedure. In essence, his heart is doing double duty- it is re-oxygenating oxygenated blood. There is a silver lining to our news. Miles exhibits no exterior symptoms of heart defect. His weight gain is phenomenal. In two and a half months, Miles has doubled his birth weight. He now weighs 10 pounds- and technically, he should not be doing so well. He is also very strong; he rolled over on his side during the examination- a wonderful sign of progress.
How are Jesse and I doing? Not so good. This has been a very painful day. We are slowly contacting family and friends with the news. We have no intention of keeping Miles' condition a secret. We are proud of him- extra chromosomes or not. Not 5 minutes ago, as I sat down to start this posting, I was sobbing. Now, I feel better having committed my pain to printed word. I wish we could have all of our dearest friends over to hold and love our child. However, we must limit Miles contact with germs. He must not catch any viruses before his surgery. Additionally, we will have to maintain the same visitation regulations until he fully recovers from the procedure. I encourage you to e-mail or call us. Even respond to this blog- I will be updating frequently.
8 comments:
Thank you for sharing this with us, Anna.
It seems that Miles is a tough little guy. I have no doubt that his strong spirit will continue to surprise you throughout this journey.
Many blessings to you and your adorable, wonderful little man.
Anna, as my heart was breaking for you and Jesse when I first read the news of Miles' health, I was also filled with encouragement and hope. I don't know any other couple who is more equipped and capable of loving an amazing little boy who will need the kind of love that I know you two will unconditionally give. I'll be praying for you three and your journey everyday. Thanks so much for sharing your heart with us. I love you very much!
Val-
Thank you for your kind words. I think you are right about Miles- his strength continues to amaze me.
Jennifer-
Your support gives me strength. I love you, too!
Hello,
I have a soon to be 2yr old with Ds. Fortunately, we didn't have to deal with any heart or other major health issues. I did want to encourage you though. I have met many families through our early intervention. I have seen several children "disappear" from our group for about a month due to their having heart surgeries. I have been AMAZED time and time again by these little babies returning after their little chests have been cut open and their hearts repaired. They are healthy, happy, and achieving new goals in record time. It is a wonder to witness after such an ordeal these tiny babies appearing so healthy and as nothing has happened and after only a few weeks of recovery time!!!
Blessing to your family.
Julia-
Thank you for your posting. If all goes well, Miles should be fully recovered from the surgery in 6 weeks. We anticipate staying in the hospital for only a week. That blows my mind. I'd love any resource/ info suggestions would could recommend. We are starting the learning process. Next week we are having Miles evaluated for our first IFSP.
-Anna
Resources...Hmmm. If you are talking about heart surgery, I don't know. Have you read 'Babies with Down Syndrome; A New Parents' Guide' edited by Stray-Gundersen?
I don't know if I have been correct but the approach we have taken is take everything we can get until he is 3. I don't know if it is State or Federal, but everything is pretty much free for Early Intervention until that age. We are getting 2 PT, 2 OT and 2 ST / week. We also were involved in a weekly early intervention class and had a sp. instructor come 1/wk. Wow, that all probably overwhelms you. It didn't all start right away. We did start PT at 6wks and OT and ST followed close behind. I don't think we went to 2x/wk until about 1yr. We are in the Memphis, TN area and I only know the resources around here. Get in touch with your local Down syndrome Association. Also, my motto is "set him up for failure". As long as he isn't meeting his goals I can pretty much get what I want. When you have your IFSP be honest of course but don't be "glowing". Emphasize your worries! Your service coordinator will make a huge difference - pray for a good one! UGH, I didn't read all of your blog so I don't know how old Miles is. I have probably just stressed you. I remember being pretty lost with all the info and initials. Trust me when I say it will all come together pretty soon. I think the biggest mistake I have seen others make is waiting to start early intervention. It will keep you busy but it will be great for your child and probably good for you psychologically. James' therapists have really been my little islands of calm!
Also, find someone you respect whose child is doing well and see what they are doing then copy what is right for your family.
Anna,
My heart goes out to you and your family. I pray that everything goes well with Miles surgery this month.
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