almost one year later....

wow....the big one year mark is just a few days away! We can't believe that Sophia is a year old, somehow it seems like it was just yesterday that she was born and had her surgery and at the same time it seems like all of that was a life time ago. I have been realizing more and more that this feeling will not ever go away. Some part of what Sophia went through and all the fears that one has as a parent will always be there just below the surface ready to reappear when the slightest thing seems amiss. But while this fear will always linger, the joy and absolute miracle that is Sophia shines over it all.
In the last couple of months Sophia has really blossomed. She is growing fast and has quite the character - she is go go go at 110% all day long. She is also walking...yes walking...Christopher and I are in trouble. She is fast, inquisitive and has the same sense of determination that both her parents have (some might call it stubbornness :-) ). Sophia also likes to sing the "itsy bitsy spider" and "open-shut-them" and she loves to dance. My favorite lately has been her animal imitations - she can tell you what a cow (moo), dog (oof), cat (eow) and horse (click click - like the hooves) all sound like as well as show you what a fish (lip smacking) and crocodile does (imagine big chomping motions).
I will post some pictures in the next couple days. Also, we are reminded again of how wonderful you all are and how we would not be where we are today without all of our family and friends.

new pictures

The day after this picture Sophia went for her
first hair cut.


Sophia showing us how to really enjoy a meal.


It is nap time.

a little bit of sunshine...

Today was a beautiful sunny day here and I took Sophia to the park where we played on the swings, went down the slides and she yelled at the ducks, "doh! doo! daaa!" Sophia is almost 11 months old now and has more personality than you can imagine. She loves the crows or "ra ra" as she calls them, her favorite dinner consists of noodles with zucchini puree and cheese on top and she can she show you what a fish does as she puckers opening and closing her mouth. We are having a blast with her right now!
We had a follow up pediatrician and cardiology appointments this month. She is now a little over 16 pounds - and has moved up into the 5-10 percentile range for weight! She is 28 inches tall, so thankfully it is looking like she will be taller than her mom. To support all of this growth and weight gain she eats and eats and eats. It is great! For all the hard times we had getting her to take a bottle, she is a pro at eating solid food and is not inhibited by only having the one functional vocal cord (this was something the ENT told us might happen). At the same time she has learned to get by just fine with one vocal cord and is able to drink without choking so often and has even mastered the sippy cup. Our pediatrician was very happy with how Sophia was doing.
Our cardiology appointment last week also went well. They only did a chest X-ray, blood pressures and an EKG. Sophia went through all this without a peep and studied the nurse with a serious expression on her face during the EKG. Everything looked fine and Dr. Lewin was happy with what he saw. Her murmur is still there from the pin-hole residual VSD but it sounds the same as before. So, we don't have another appointment for 6 months!!!
We have also been released from any required OT/PT appointments (unless we feel she needs to be seen). Without all the doctor appointments to go to we were joking that we will have to find a new hobby.
So, now we can concentrate on the normal activities...walking, learning to sleep through the night and trying to get a hold of the cat.

on the move...

A few days after our last cardiology appointment Sophia decided that all this laying around just wasn't her thing. I turned my back on her for two minutes and the next thing I knew she had decided to start rolling over and had rolled her way across the living room and was under the coffee table sucking on the phone line. Yes, we are going to have to finally baby proof our place.
Sophia is doing well. We still struggle with her to take a bottle but, she seems to be happy with solid food especially oatmeal and bananas. The ENT doctor mentioned that she might have an easier time eating solids than drinking because of her vocal cord, looks like he is right.
On the medical front we have had more shots. We are also trying to get her Synagis shots (these protect at-risk infants from respiratory syncytial virus (RSV)).
Other than that Sophia is a very happy little girl with a sweet nature and a good sense of humor. Here are a couple recent pictures (supposedly we can put videos on the blog so we will try to get one posted).

latest cardiology appointment

Sophia is now a whopping 7 months old! She has started eating solids, her current favorites are bananas and oatmeal. Just recently she has decided that eating is okay. All of a sudden her milk consumption jumped up by ~150 mL (5 ounces) per day and she stopped the tight lip act when it came to spoon feeding. Now, she gets hungry which also means she gets mad when food isn't there fast enough and exercises her one vocal cord....it might be a good thing for our ears that both aren't working (we have to keep our humor in all of this). All of her eating is paying off and she now weighs 13.5 lbs (6.1 kg).
On Monday we had another follow up echocardiogram and check up with Dr. Lewin. Christopher and I were very nervous before the appointment, always that lingering fear of bad news. Sophia was amazing during the echo and stayed still other than squeezing the technicians thumb till it turned blue.
The good news is that her echo looked great! She still has a pinhole residual VSD and some minor valve leakage as well as a little turbulence in one area but, Dr. Lewin said all this was very minor and not anything to worry about. The best part was that he declared us officially "out of the woods". But, they do need to keep an eye on her to make sure everything is growing especially her aortic arch and that no obstructions form. So, we will go back in four months. Sophia celebrated the good news by first trying to pull the stethoscope out of Dr. Lewin's ears and then by giggling hysterically while tearing up the paper on the exam table.

back to the ENT

Now that we are posting again I will try to keep it up. We went to see Dr. Ingles (the ENT) this morning. We noticed that Sophia has once again picked up a bit of a strider (making squeaking noises as she sleeps) and that her voice quality isn't always the best. She has also stagnated in her feeding progress when it comes to taking the bottle. Dr. Ingles scoped her and said that her left vocal cord (which we thought was working) is not moving much, if at all. But, her right one is doing a great job compensating which is why she has a voice and can feed as well as she does. So, all we can do is wait and see if this changes. For now we need to find feeding strategies to help her continue compensating - we really don't want to put the NG tube back in.
So, now we start the next round of appointments - feeding therapist, 6 month well-baby + shots and cardiology. The positive thing this morning was running into other members of the CHD support group - I hope your appointments went well!

pictures from last week