Heart visit #3

We had another heart echo.  This is the third heart exam because Katie’s back has always been pointed out and her ribs are casting shadows making it difficult for them to see exactly what is wrong with the heart.

Of course, our stubborn angel had her back on display again.  They were able to get some better pictures, but are still not exactly sure the extent of the problem.  They did discover that the pulmonary artery is narrowed (bad news), but they were able to see a good amount of blood flowing through it (good news).

This leaves three possible scenarios.

1. Worst case: The artery is too narrow.  Katie would be born blue, she would immediately be put on medication to manage the blood flow.  She would be kept in the hospital until she could be transported to Rochester for an open heart surgery to correct the blood flow.  She would be released 1-2 weeks after the surgery (assuming the DS doesn’t slow her release with other problems).  Then, she would need another open heart surgery at 6 months to correct the hole between the chambers of the heart.
2. Medium case: The artery is narrowed but not too much.  Katie would be born fine, released, but would start to struggle earlier and would have the complete surgery early, ie before 6 months.
3. Best case: The artery is perfectly narrowed and actually corrects the blood flow.  Katie would be born fine, released, she would stay strong and healthy, and she would have the corrective surgery at 6 months or even later.

Again, this visit has left Mike and I frustrated.  Frustrated because they cannot see what they need, that they cannot give us a firm diagnosis, that there is not a firm idea or plan for what will happen to Katie when she is born.

At the same time however, we are very happy with the doctors.  We are happy with their care for Katie and their devotion to getting the diagnosis right and fixing the problem.  We have every confidence in them.

 

We also learned that Katie cannot have surgery if she has had a viral infection in the previous month.  It will be important for us to reduce the chances of Katie getting sick.  We do not have to have ‘germ isolation’ but we will need to be careful with hand washing, flu vaccines for people in her inner circle, being sure people that hold her are not sick, etc.  

We will be having another heart exam in about a month.  We will be praying that they get good images to make the best decisions for Katie’s care.  It would also be nice to get some really good news!

Buddy Walk Day

We went to the Buddy Walk in Elmira and had a wonderful time.  Buddy Walks are annual local events to raise awareness for DS and specifically support local programs such as making New Parent kits available at local hospitals, inclusion curricula for schools and supporting the parent network.  The weather was perfect which made it even better.  Mike and I were both expecting about 10 families but there were easily 300 people!   There were lots of families and also a large number of extended families, with grandparents, aunts, uncles, and cousins.  It was wonderful to see everyone together, having fun, and enjoying each other. 

It was nice to be with people who understood, didn’t need explanations, were not feeling sorry for you, were just getting on with life, and most importantly having fun.  This event was absolutely no different than any other charity I have ever been too (and I have been to a lot with my previous job).  There were lots of attendees with Down syndrome but they were just like everyone else.

The main event was a 1 mile walk around the park pond.  It wasn’t extensive but it was pleasant and a good distance for all the families with varying abilities.  There was also face painting, a carousel, child sized train, snow cones, hot dogs and free balloons.  Ellee had a blast!

Getting ready to walk for Katie!

With each person’s registration you received a free raffle ticket to attempt to win books, DVDs, or therapy equipment.  There were at least thirty different items often with multiple copies of the books and DVDs.  You could go around, look at all the times, and place your ticket with the individual items you would like to win.  We won two items!  A book called Down Syndrome Parenting 101: Must-Have Advice for Making your Life Easier, and a DVD called Discovery: Pathways to Better Speech for Children with Down Syndrome.  I have already started reading the book and I think it will be very helpful.

I found it really interesting looking at all the items up for raffle.  All the books that I have already read were offered, which I take as a good recommendation.   I also noted the therapy items.  They had bubbles, play dough, kites, glider bicycles, straws, balls and whistles.  I didn’t try to win any of the therapy items because we already own all the items for Ellee.   It made me feel very confident that the things we will need to do with Katie to strengthen her muscles and practice other developmental skills are already incorporated into our lives.  It was nice to know that the things I do every day with Ellee (just for fun) are the same things I will need to do with Katie.  

We also would really like to thank all the people who donated to show their support for Katie.  Mike, Ellee, and I each had individual donation pages, rather than one as a family, and between all of us we raised $675!  Through an oddity of the website, we could only see who donated to my page.   I believe we were able to thank everyone individually but if you slipped through on Mike or Ellee’s pages, we want to thank you too!

We are very happy we attended as we were able to get a good perspective on our future, have a great time, and start joining this wonderful community of compassionate people.