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.

first day on our own

Well, we made it though our first day on our own with Sophia. While she had a great first day her parents were a little stressed to organize her feedings and always checking if she was ok. Now we are settling in and enjoying ourselves. We even gave Sophia her first sponge bath this afternoon.
She ended up being discharged from the hospital with an NG tube for feeding, she is just not strong enough yet to suck down what she needs (she weighed 5 lbs 8 oz leaving the hospital). Also, cardiac babies have a hard time gaining weight so she has been put on a weight gain plan where the breast milk is slightly fortified with formula. Christopher and I are learning to manage her NG tube and at the same time keep offering her the bottle/breast so she can gain stamina and eventually eat on her own. We have also managed to give her medications - she is taking Zantac (to keep reflux from being a problem with her NG tube) and also the diuretic Lasix (to keep her lungs from accumulating fluid, a response to the surgery). The hospital was very organized with our discharge and has already set up appointments for us on Monday with the cardiologist at Children's and our pediatrician.
Our next big adventure is the flight home tomorrow night. Once home, we need to keep Sophia somewhat isolated initially until she heals more but after that we are really looking forward to introducing her to everyone.

leaving the hospital

We were discharged from the hospital today! It is quite daunting to be on our own with Sophia with no monitors or doctors around. But, at the same time it feels so wonderful to have all three of us together. Before leaving the hospital they did some last checks on Sophia including a hearing test and also took out the last lines connected to her heart - the pacer wires. They also did one last echocardiogram and removed all of her stitches.
We are very excited about coming back home in a couple of days. Initially, we are supposed to lay low and not take Sophia out for a while but over time we are looking forward to introducing her to all of you!

almost home...

The last couple of days have been quite eventful. Besides finding out that the post-operative echocardiogram showed a successful repair, we were also moved upstairs to the I/ICU on Friday afternoon. This is different atmosphere than the CV/ICU. It is a lot quieter and now we have a chance to fully participate in Sophia's care and do all the wonderful things parents do - feeding, lots of cuddling and of course diaper changing.
On Friday we also found out that Sophia's left vocal chord is not moving. The nerves controlling our vocal cords run near the heart and this is a very common complication when there has been extensive surgery on the aortic arch. Dr. Hanley was not surprised about this because he had to put some tension on the nerve during surgery however he says that the nerve was not severed. The interesting thing about these nerves is that even if they are severed they can grow back. The doctors expect Sophia's to start working again in 1-3 months. Right now her right vocal cord is compensating which is why she can still swallow and vocalize/cry and her voice gets stronger everyday - apparently we can get by with only one vocal cord.
The big news is that the doctors are planning to discharge us from the hospital on Tuesday! We are both excited and a little scared. Tomorrow they will remove the last of the lines on Sophia and run the last couple tests. They will also teach us how to handle her feeding - she will still have an NG tube for a while. We are planning to spend a couple days down here and then head back home. We can't believe that we are going to be home soon and that Sophia's surgery was just two weeks ago! We are really looking forward to having our little family home.