Our Congenital Heart Warrior!

Our Congenital Heart Warrior!
Rockin her Red!

Sunday, March 6, 2011

How time flies, already 6 months old!

It's hard to believe that our baby girl is already 6 months old! Addy is doing wonderful at home and some days it is easy to forget that she has half a heart! She has made many strides in the last month...
After successfully getting rid of our feeding tube over a month ago, we have not put it back in one time! I still have a stash of them just to ward off evil spirits but I'm not counting on having to use them. I think everyone should have a spare NGT around just in case their child is sick and won't eat! She is doing great with her feeds since switching her to Similac Sensitive formula. She had her 4 month shots last week, at 6 months...she weighed 15 lb and 4 oz! She is hanging in the 30-45% percentile for weight and height, which is perfect (anywhere between 10-90% is good). We decided that even though flu season only has about a month or two left we went ahead and tortured her with a flu shot since she is now 6 months. She didn't feel too good for a day or two but it is worth it if it keeps her from getting sick. She might get one more month of RSV prophylaxis but by then hopefully the majority of the winter sicknesses will have passed without her getting them! We don't have to to oxygen saturation checks anymore but my best guess would be that she hangs out somewhere between 80-88% most of the time.

Most days Addy drinks about 20-24 ounces. I still stress out when she has a day where she doesn't take her "goal". It is hard for me to give up the thinking that she has to take 100% of her volume every single day since for so long she had to get every drop to make her gain weight. Even though we are now feeding on demand, I still don't feel like our feedings are "normal", nor do I know if they will ever be! We are still technically giving her 27cal/oz fortified breast milk but I am starting to wean down the calories to a more normal amount so that she isn't drinking quite such a milk shake all the time. We are finally getting 6 hours of uninterrupted sleep at night! I usually give her 5-6 oz right before bed, then she wakes up about 5 am to eat again, and then goes back to bed until about 9 am....thank god she's not one of those early riser babies! She is a good baby and takes her medicines by mouth like a pro though! Her color remains great, she is nice and pink with rosy cheeks. Sometimes the only time the seriousness of her condition slaps me in the face is when she gets cold or is crying and her hands and feet turn dusky. It's then that the nurse/mommy in me starts running through possible scenarios and the mommy monitor for complications is kicked into high gear for awhile. Always she goes right back to her normal self but it still is a reminder of how fragile she is.

In other ways, Addy is as normal as can be! We are finally doing a good bit of baby/table foods and I have learned that she MUCH prefers real table food to the bland baby foods. I'm positive that it is not in my imagination that as soon as I sit down to eat she decides to scream, hence she also tries to grab every piece of food I have out of my hand! In the last 2 weeks she has discovered the whine squeal of "I'm not getting what I want", and is taking full advantage of that. She now decides when she is going to eat, and quite loudly voices when she is NOT. She is mobile, rolling over and over, as well as scooting herself around and round in circle in her crib. She eats EVERYTHING that you don't want her to, I'm decided she is part goat because she will gnaw on anything you give her a chance to! She is no longer content to just sit in her car seat when we go places...she needs to see and be involved, and for the most part the center of attention! She can't quite sit up completely by herself unassisted but she is tripoding and I think that will come any day now. She can put her own pacifier in her mouth, although I always know she did it herself when it is in her mouth upside down. All of these normal baby things are such a joy for me to be able to see in my baby that at one point I didn't know if I would ever get to bring home. Every day is a blessing.

We have gotten a lot of really positive feedback from our announcement for our plans to start a foundationt to help families of children with congenital heart disease. We have started the process to formally start the foundation and are waiting on all of our federal numbers and official paperwork. We will welcome any donations of any kind, but right now it can't be claimed as a tax deduction. We soon as we get everything in we will post more information to start working on our first fundraisers!