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

an update...finally...

We apologize for this long silence - somehow time has just flown by. Happily, we can say that Sophia is doing well and has grown a lot in the past couple months.
We don't need to go back to see her cardiologist (Dr. Lewin) till Oct 29th. Our last echo in July showed that her heart was growing normally. They noted some turbulence in one area and a very small hole left where the VSD patch is but we were assured that these were nothing to worry about. For now they will keep monitoring her - the main thing to check for is that her reconstructed aorotic arch grows as she does.
We have also made some progress on the feeding front. For the past 25 days Sophia has had her feeding tube out! The first week was hard - she just barely took in enough milk to keep herself hydrated. Now she is staying hydrated but not taking enough in to grow as fast as she had been when she had the tube....so we are not sure what to do and getting her to take the bottle can be pretty stressful some days. Hopefully this will improve because we really don't want to go back to a feeding tube. Also, we are still feeding her 3 times a night so it would be great if she could get more in during the day (then Christopher and I could also sleep more). We have also started her on solid foods - she loves bananas and in general enjoys eating from a spoon which is great.
Overall though, we are finally settling into parenthood and enjoying it. Sophia is a very happy little girl with a ready smile. Right now her favorite activities are playing with her stuffed horsey, laughing with daddy and taking walks in the garden - especially if she can get her hands on a flower and shred it).

Thank you for all your wonderful support

Sophia is 2 months as of today. We are amazed how well she keeps recovering - in part due to all the positive thoughts we have received from all of you.





Thank you so much for all the wonderful messages, phone calls and cards. You have all been so wonderfully supportive and helpful. If Sophia could, she would tell each and every of you this but for now she just blows spit bubbles and smiles.

Her incision has healed (see her chest) and she is exploring everything around her. While we continue to work on feeding issues she is growing fast. Her weight is now 3385 g (approx 7.5 pounds). Way to go baby!
We will continue to post and give a monthly update with new pictures for those who are interested.

pictures from this week

Sophia spent a little time without the NG tube - it was nice to see her all of her adorable little face.

Sophia napping on the couch.

after two weeks home

Time goes by so fast! We have been home for two weeks now and Sophia is 5 weeks old. We are trying to settle into a routine which primarily involves feeding Sophia. The feeding thing is still an issue and we are still trying to figure something out. She is still getting almost all of her milk though the NG tube. We have been trying various bottle things with little success and she still has this weird thing of swallowing lots of air. So far we have seen our pediatrician and an occupational therapist about this. Next week we finally have our appointment with the ENT doctor plus follow up cardiologist and pediatrician appointments. So, hopefully we will learn something so that we can get her bottle/breast feeding.
Otherwise, Sophia is a happy baby with a beautiful smile. She loves to be danced with or sung to and naps in mommy or daddy's arms.

first days home

We made it back home! The last day in Palo Alto was hectic - packing, feeding Sophia, packing, feeding Sophia, diaper change, more packing...but we made it to the airport and Sophia was an amazing little traveler. We were very grateful to be picked up from the airport by friends and once home settled in for the night.
Sophia is doing well overall but now we are dealing with some feeding issues. She has started this weird thing of gulping air - she does this regardless of whether she is trying to eat or just laying there. We are not sure if this has something to do with the paralyzed vocal cord. We do know that she now has a major problem with bubbles in her tummy and is highly uncomfortable. It also means that she has been spitting up her feeds even when given via the NG tube. On Monday we have our first set of appointments here with the cardiologist and pediatrician and hopefully they can help or get us a referral to an ENT doctor (ears, nose, throat) so we can understand what is happening with her suck - swallow reflex.