I don’t always get a moment to sit and write an entry, at least not as much as I would like to. Between feedings, meds, keeping Addie away from sharp objects and driving Liz somewhere, we don’t have a lot of down time. Right now, it’s snowing, Addie is watching Jake and the Neverland Pirates and Isabelle is sleeping. Have my coffee and thoughts over the past week or so. I am all set!
We are trying to increase Isabelle’s feeds so we can (well- Chris can) get more sleep at night. Instead of 120 ccs, we went up to 150. The experiment was declared a failure after numerous bouts of vomiting. We decided to go to 130 and bring it up slowly. Yesterday was also Isabelle’s first taste of cereal. She did manage to swallow about a teaspoon and got the rest all over her face and in the folds of her neck. I was happy it seemed to be a little more successful than when we introduced cereal to Adeline. Dr. Lightdale suggested we start with rice for a week, then introduce a new food each week rather than the usual 3-4 days. Isabelle has proven she needs to take things slow which makes this process even more challenging. The pediatrician would like to speed things up and get her eating more like a 6 month baby. I would too but then we have a lot of laundry to do whenever we try. She can’t handle it. So that’s that.
This past week has been Congenital Heart Disease Awareness week. I posted pictures, a few facts and had our story posted on a few heart mom blogs. Awareness and knowing about heart defects is important to me, not just because of Isabelle, but we had absolutely NO idea what she had. I had never heard of Hypoplastic Left Heart Syndrome and had no idea defects like this existed. We also didn’t know where to turn because the American Heart Association doesn’t have much information about congenital heart defects, and Google just gives you BAD NEWS. It was ugly for a few weeks until I contacted Sisters by Heart. After that, the world of CHDs opened up to us and we felt better knowing we were not alone.
Heart defects are the number 1 birth defect, but there is little information given to expecting parents about them. One mother who lost her baby girl because of a CHD wrote to the author of the What to Expect books, asking her to have more information than a small paragraph about the possibility of having a baby with a heart defect. For something so prevalent, there is very little about it and that I found very frustrating.
I wore red for Isabelle, and for all the babies I have gotten to know in the Heart community. I thought of Rowan, Gabe, Anya, Hayden, Seren and others who were taken too soon from their parents. We have been beyond fortunate with Isabelle. Most of the time she doesn’t look sick. The surgeries have made it so that she can live, they did not create a ventricle where there wasn’t one, or cured her disease. I consider each day ‘borrowed time’.
Awareness is also important when it comes to our relationships with other people. I have had my struggles with people stepping away once we were diagnosed. I even had people say to me “I had to stop reading your facebook posts- it was just too much.” Support from friends and family has carried us through so much this year, we cannot thank you enough.
My goal for this year is to create some kind of foundation that donates to multiple charities instead of just going to one. Research and support for families are important to us and I want to do what I can to give back. I would love to be able to walk into our local ER and not have to worry about having to educate them. So much to do and hopefully, I have a lifetime to do it in!