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.

The operation that Dr. Hanley's team performed

This is Sophia's little heart before (top) and after the operation (bottom). Both vessels come out of the right ventricle (hear on the left). The aorta is smaller than the pulmonary artery and moved further to the right (left in drawing). The ventricular septal defect is big. In utero this worked, but once the ductus arteriosus closes (connection between vessels) Sophia would have run out of oxygen.

Below you see all the changes Dr. Hanley's surgical team performed during the very long operation. Can you see them? You should count 6 changes. These changes are massive. But here is the good news, today they performed another echocardiagram and she is doing excellent. Isn't that wonderful. We are so, so thankful and relieved.

swallowing and breathing

Today was a nice mellow day for Sophia. She spent the morning sleeping and playing with grandma. She is a really sweet, mellow baby and smiles easily. They did the swallow test in the afternoon which involved wheeling her (bed, monitors and all) down to x-ray where we fed her a strawberry flavored barium solution. As long as they used a low flow bottle nipple she did just fine - she can swallow and isn't aspirating into her lungs which is good. Tomorrow they will check her vocal cords since the doctors are still worried about the little gasping noises she makes. They will also do a full post-operative echocardiogram tomorrow. Our doctors are making sure that Sophia is doing well before moving us upstairs to the I/ICU. If things go well with these tests we can get moved as soon as tomorrow afternoon.
We also wanted to say thank you to all of you who have left us phone messages. We hope to start returning calls soon but right now we are always in the ICU where no cell phones are allowed or catching a couple hours of sleep. Once we have moved out of the ICU we hope to resurface a little.

vocal cords

The occupational therapist (OT) came by yesterday and again today to check Sophia. She definitely can suck on to the bottle, or anything else that gets close to her mouth (fingers, blanket edges and even an IV line). But, she can't tell how well she swallows. Sophia's voice is also still really week. These two combined makes the doctors worried that there is a problem with her vocal cords or maybe she doesn't have the swallowing process down. During heart surgery the nerves controlling the vocal cords can get damaged. Also, intubation can really be hard on vocal cords, especially in a small baby. The nerves and the vocal cords can recover from this, but it takes time. So, tomorrow they will check her vocal cords. To see if she is swallowing properly they will also do an x-ray tracer study by giving her barium to swallow. When she will get moved to the intermediate ICU (I/ICU) will depend on these results. She is getting all of her milk though an NG tube (it goes from her nose into her stomach) and is up to 25 ml every two hours! Otherwise, Sophia is enjoying being held and rocked - she was even held by her grandparents for the first time yesterday!

more lines out

Sophia had another big couple of days and is steadily getting better. Yesterday they pulled the line out of her right atrium. This was a little scary since she bled more than expected and there was some concern about her having blood trapped around her heart which would require re-surgery. Thankfully, a follow up echocardiogram showed that there was no blood trapped and everything looked good. Today all three of her chest drainage tubes were removed. Now we have a baby that is pretty much disconnected from most tubes and lines. We are now enjoying every minute holding and rocking her! The next big step will be to get Sophia feeding and gaining weight. Tomorrow she will get evaluated for her ability to suck-swallow-breath, that all important newborn reflex. There is also a rumor around the ICU that we might get moved to the critical care nursery in the next day or two. We can't believe that her surgery was just 8 days ago, we are in complete amazement of her and how wonderfully she has come through all of this!

Sophia on her way...

If you thought bottle feeding is hard...(Sophia's life-support lines last week)

And Sophia today (Monday)... she is taking peaceful long naps.
And so are we...

breathing tube is out

They took Sophia's breathing tube out this afternoon! She had no problems breathing after they extubated her. It was hard watching her fight the tube the last couple of days, she was miserable and inconsolable. But now she is looking comfy and is completely alert and looking around. The next big step is to get the second and last line out of her heart. This line goes into her right atrium and monitors the pressure. The tentative plan is to take it out tomorrow or early Tuesday. After that the chest drainage tubes can come out. Then, we can finally hold her again and also start working on breastfeeding (right now she is getting milk through a tube that goes from her nose to her stomach). Christopher and I are so happy to see Sophia feeling better and are enjoying talking and singing to her.

recovery update

Sorry that we have not kept up - the last few days have been busy. Christopher and I are alternating shifts so that Sophia isn't ever without one of us. She is recovering well although the last couple of days have been hard.
Thursday they closed her chest and then were able to take her off a couple of medications (her IV poles, three of them, were laden with all the various medicines she needed). They were going to close on Wed but Dr. Hanley said to wait one more day to get more fluid out of her system. On Th she finally started looking like our lanky little one again.
Friday they removed another line, this one went into her left atrium and was there to monitor the pressure. They also decreased (e.g. dopamine) or stopped (e.g. epinephrine) some of the other medications and stopped her morphine drip. Friday night was when things became more difficult, Sophia, especially for a new born is very alert. Without the heavy medication she now realizes that she, besides being in a lot of pain, has a breathing tube and so she has been trying to fight it. We are doing our best to calm her. They don't want to give her any sedatives or morphine because that will depress her respiratory system and that is what we need to stimulate to get the tube out.
Yesterday they had planned to take out the breathing tube but when they turned the ventilator down to zero she had some apnea which is common for new borns esp ones that have been sedated. So, they decided to wait another day.
This morning we had the scare that there was some air in her chest cavity. It turns out was a small bubble and they were able to remove most of it through one of her chest tubes (she has three tubes still in her chest to keep draining excess fluid from). So now we are waiting and watching to see how she does when the turn the ventilator down...hopefully there will be no problems and they can take the breathing tube out. It is really hard to watch her struggle against it. Christopher and I are amazed at Sophia's strength and resiliency plus she is still the sweetest baby. I will try and post again to say if they were able to get her breathing tube out...

first 36 hours

Sophia is recovering well. Christopher and I are taking shifts to sit with her around the clock. She is sometimes reactive and will open her eyes so we try to talk to her and hold her hand. The first night they expected her to be fairly unstable since the surgery was so major and she was on the heart-lung machine so long, but she showed them. She stabilized quickly and many of her stats (e.g. lactic acid and blood gases) have come back to normal. They were able to take her off some of the medications yesterday and also start her on a diuretic. She is very swollen so this will help remove excess fluid. Her heart is still beating on its own, has a good rhythm and conduction signals. She also has good blood flow to all her extremities showing that the arch repair went well. They were considering closing her chest this afternoon but Dr. Hanley wants to wait till tomorrow to avoid any problems compressing her heart. We will post how the chest closure goes tomorrow.

surgery went well

Dr. Hanley just finished talking to us. He said that the surgery was major but went well. They were able to do the arterial switch and patch the VSD. Fixing the coarctation in the aorta was much more difficult than anticipated and they had to put a patch in along the entire aortic arch. Besides this, they removed some sub-aortic conus muscle, removed the PDA and fixed a small hole between the atriums. Overall, everything looks good and he said Sophia has a good strong heart muscle. The next few days will be critical - she will need to stabilize and some of the swelling will have to go down. She will likely stay on a ventilator for the next week and will be kept heavily sedated the entire time.
Christopher and I can both honestly say this has been the hardest and longest day of our lives. We thank all of you who have been sending your thoughts and prayers to us. We hope to finally put a long posting about how the last few days have gone that is more detailed, in the mean times, we (or one of Kenia's sisters) will continue to post a daily update on how Sophia is recovering.

Her face is changing so quick...

Pictures, Pictures

Here are a few of pictures of Sophia from the last couple days. Enjoy!!