Laughter is the BEST Medicine

Although Stella has been through more in her first few months of life than most people endure in their entire lifetime, she is one of the happiest babies. She spends most of her day smiling, playing, and trying to talk with us. She loves music and she LOVES her Mama! She has started to really laugh and sometimes I can even get a giggle out of her. She has a lot of fun bouncing or jumping in our arms (I guess she didn't get my motion sickness) and if I add in some silly noise she's ready to party. Her toothless grin is contagious and I am going to miss it when her teeth finally come.

Growing Girl

Our 8lb 9oz bundle of joy is growing out of things now! 

Stella was born 21.5 inches long and at her doctors appointment today she was 28  inches long and weighed in at 16lbs 15oz! After we were discharged from the hospital in August she was no longer on the chart for weight but for the past 4 months she has remained between percentile 5-10.

 

 Our tall 9 month old girl has officially outgrown her baby bathtub and her bassinet. She is now sleeping in her pack n play in our room. She slept very well her first night but she also discovered that she now has room to move around while she is sleeping and she took advantage of it! 

Stella does have her own beautiful room that I hope she will get to sleep in some day

But for now she is happy sleeping in her new bed in our room...until the vomiting/gagging gets under control

Stella's Whole-Hearted Story

I know that many of you have been following Stella’s story for awhile but I wanted to share what we have been through for those who are just joining us on our journey and share some pictures of Stella along the way that haven’t been shared yet. Be forewarned…it’s very long because Stella has been through a lot her first few months of life and knowing her background story is important to understanding where we are today.

Stella Grace Sridharan was born on April 5, 2011 at 12:30 am and we were so excited to welcome our beautiful baby girl.

After only pushing for 5 minutes Stella graced us with her presence, but she didn’t score great on her APGAR test and she required oxygen right away. The oxygen helped and we got to hold our baby knowing that she was perfect and thinking that she was healthy. The next night we sent her to the nursery to try to get a couple hours of sleep…an hour later we were woken by the nurse saying she had started to turn blue and they think she aspirated. We waited for what felt like hours to hear some more news and finally be able to go see our baby.The nurses thought she had aspirated and they decided to run tests to find out what was happening. She had an echocardiogram (a heart ultrasound) and we were lead to believe that it was not a heart issue and that she aspirated and we would be able to go home the next day. Another echo tech was sent over from St. Joe’s hospital to “make sure” that it wasn’t a heart condition. We had completely dismissed a heart defect and at 7 pm the phone in the hospital rang and a cardiologist from St Joe’s told me that my baby had a congenital heart defect and would need heart surgery very soon, that we would be transferred to St. Joe’s that night. Stella and I were taken by ambulance to the NICU at St. Joe’s so the surgeons and cardiologists could create a plan and she could get a little stronger, we found out that she had TAPVR (total anomalous pulmonary venous return). 

 

 The surgeons met with us and explained that her pulmonary veins were not taking blood to the right places and that the success rate of the repair surgery was about 98%, meaning most of the time the patients have the surgery and the “plumbing” gets fixed. When Stella was 1 week old she went into open heart surgery to repair her veins. She did great during surgery and we had a waiting room full of family and friends celebrating with us as the surgeon shared how well the surgery went. Stella had a relatively quick recovery and we rejoiced daily as we had no major setbacks, and 10 days post-surgery on Good Friday (what we now call Great Friday!) we finally got to take our baby home!
                                                   

 After the initial open-heart surgery to repair the TAPVR that she was born with we thought we were in the clear and we could finally fully enjoy the somewhat normalcy of parenthood. We were doing our best to treat Stella like we would if none of this had happened (minus the heart monitor that we had to carry around, the extra doctor appointments, and the dreaded feeding tube and “Kangaroo Joey” pump.) During an echo/cardiology follow-up appointment on June 20 we were readmitted to Phoenix Children’s Hospital because they found a narrowing in her veins that were repaired and it was causing the right side of her heart to be enlarged (unfortunately meaning Stella was in the 2% of unsuccessful TAPVR repairs). We were actually told that the right side of her heart “looked like a mess” – that can’t be a good thing!

We brought Stella in as a smiley 2 ½ month girl and watched as she struggled more and more each day to do the simple task of breathing and giving her body the oxygen that is necessary. On June 27^th we received a call at 3:30 am to come to the hospital immediately because they were having to intubate Stella (to put her on a breathing machine). The doctors decided that surgery needed to happen ASAP and she was scheduled for 7:30 am the following morning. They took some routine blood cultures for testing prior to surgery and it looked like everything was good; however, the blood cultures showed that she had a blood infection from her central line and the surgery got postponed. That Tuesday was the day that we hit rock bottom. Stella was on the ventilator and they started her on antibiotics trying to keep her stable and fight the infection before operating. We watched as she went into heart failure and at the worst moment of our lives David and I were taken into a room with four doctors to talk about our options. The option that they gave us was to put her on ecmo (a form of heart and lung bypass that involves two very large tubes in her neck, one going into her superior vena cava and one coming out of her carotid artery-the tubes took all of her blood out of her body into the ecmo machine which oxygenated the blood and pumped it thru her body) and get her stable so they can do the surgery. But the surgeon said that the infection and heart failure really complicated things with the surgery and her chances of making it through were minimal (1-2%) and that he could not guarantee that if he operated this time and stenosis continued to form in the future that he would be able to operate again. He made it clear that stenosis could form weeks after the surgery, months after, or years after and if it did reform there probably would not be much that they could do. The other “option” which in all honestly was not even an option at all, was to make her comfortable the way she was and let her survive as long as she could without providing support-which in her condition would not have been long. We obviously chose to give her the best chance we could and pray for miracles. I can’t even begin to explain how it feels when someone is telling you that your child might not survive but I do not wish that feeling on anybody!

Being on ECMO helped Stella to be “stable” enough for surgery so the next morning we walked her to the OR. After Stella’s second open heart surgery we were told by our cardiologist that the surgical team did a “miraculous job”- and we knew that a miracle had definitely happened in that operating room.

 She came back from surgery completely off of bypass and only on a ventilator. We were in the hospital for almost 2 months after surgery (and we were unable to hold Stella for almost an entire month),

Holding Stella for the first time after 23 days

 this time in the hospital we had many setbacks including kidney failure and dialysis for 13 days, failed extubation followed by another surgery for a left diaphragm plication, and discovering that when she went into heart failure she at some point had a stroke that caused most of the left side of her brain to be damaged. Despite all of the bumps in the road we got to go home again on August 13 with our strong little girl – this time we went home with a pulse oximeter, oxygen, the NG tube and feeding pump and many meds that were distributed every 2 hours.

Stella makes progress daily and she is off of oxygen, the pulse ox is gone and she is only on 4 medications. She is still unable to eat by mouth and we decided to have her go thru another surgery to get the Gtube placed in her stomach in the hopes that she will make more progress overcoming her oral aversion. We see speech, physical, and occupational therapist weekly to help her gain strength in her right side (which is weaker due to the brain damage) and to help introduce different textures and objects to her mouth. We regularly see a neurologist, gastroenterologist, and cardiologist. Her heart has been doing well and every month when she gets an echo we are told that it continues to get better and closer to “normal.” Stella will need regular visits to the cardiologist for life because her pulmonary veins are at a high risk to have restenosis, but we have been told that if she makes it to her first birthday without having any heart/vein concerns that her risk of having restenosis again goes down greatly. You better believe that her first birthday party is going to be a HUGE celebration, Save the Date-on April 6, 2012 (Great Friday) we will be celebrating.

New Year's Resolution: Create a Blog

One of my goals for this year was to create a blog for our family. I want a place to share Stella's story and what we as parents have learned from our daughter. My goal is to update at least once a week with the progress she is making for those of you who have lifted us up in prayer this past year and want to continue to follow her miraculous life.  I will share what we have been through, what I have learned and what our daily life is like now...including lots of pictures. We greatly appreciate the support that we have had as we went through some of the toughest days we have known and we are blessed to have you as part of our lives.

Welcome to our blog!

-The Sridharan Tribe