A little bit of history and how we need your help.

Just giving everyone a little bit of history of our family.

    In December of 2005 George and I found out we were pregnant with Alena. We were not married and got married shortly after in February 2006, shortly after our wedding we had our normal 20 week ultrasound which showed that we were having a perfectly normal and beautiful baby girl. We were thrilled!

Alena shortly after birth

   Fast forward to September 6th 2006. Alena is born vaginally with minimal complications during a induced labor. Immediately the doctors took her off of my chest to the little baby box they always have available to give her some oxygen since she was very purple, her umbilical cord kept bleeding and was rather small. In general they were worried, a few minutes later our obgyn tells us that he thinks she has Down syndrome since she is showing some of the physical features associated with down syndrome. After the nurse harassed the doctors a little bit she got them to leave so that I could nurse Alena and bond for a little while with her. After this we were told she needed to be taken to the NICU for some normal testing.

Alena in the NICU at the hospital where she was born.

   We later found out that they were doing a echo of her heart without telling us. Needless to say the heart echo didn't come back well and we received a cardiologist at our room door instead of Alena coming back. He informed us that Alena had Tetralogy of Fallot and almost complete pulmonary artresia and that she would need to be care-flighted to phoenix children's hospital and have surgery fairly soon.(See this link for a explanation of tetralogy of fallot) 

   We got to Phoenix Children's hospital the next day after they discharged me and thus began our journey. Alena had a heart catheterization at three days old and her first heart surgery at one week old. She then had a emergency heart surgery right after the first heart surgery on the same day to fix a clot that had formed in the shunt they had placed and was cutting the oxygen saturation to her brain. Alena also developed a complication from the heart surgery called chyllothorax which is when the lymph nodes in the chest are damaged and fat leaks into the lungs resulting ultimately in drowning, which meant that she needed to be on a "fat free" diet. Babies don't grow well on this diet. One of Alena's lungs also collapsed during this visit and she needed to be re-intubated and put back onto the ventilator.

Alena on the ventilator approx 2 weeks old, its her first smile.

Alena's first day home.

After 8 weeks Alena was allowed to go home, unfortunately she didn't seem to be doing well at home so we took her to the pediatrician two days after she came home. She had gained two lbs in two days and needed to go back to the hospital immediately (this is water weight and the first sign of heart failure). We found out the problem was due to her lasix dosage( a diuretic) , they had been giving her a booster dosage at night in the hopes she would be able to be fine with the regular daily dosage but didn't adjust her daily dosage. Basically she wasn't shedding enough liquid and her heart was overwhelmed. She developed a tricuspid valve leak from this mistake. After the problem was solved we finally got to go home.

   Alena was on a NG tube for a while and we worked on getting her services like Speech and Occupational Therapies. We had doctors appointments every few days to check weight, heart function, wet and dirty diapers, ng tube placement and many other things.

She is such a smiley little girl.

   At five months Alena's cardiologist decided it was time to get another catheterization done to see if she needed another heart surgery. So we packed up and went to the hospital for another day to find out that she did indeed need her next heart surgery. At six months Alena had her next heart surgery to repair the hole in her heart and open up her pulmonary artery a bit more. The surgery seemed to go well but then she started to develop a problem breathing well and staying alert. They did a emergency cath to get a good look at her heart and discovered a "kink" in her left pulmonary artery that needed to be straightened out. So she went back into surgery and they fixed it the best they could. After another week in the hospital Alena was able to come home.



 Now it was the waiting game again, when will she need the next surgery. In the meantime Alena grew and although she developed a bit slower then her peers she was still a great joy to have around.

Right around Alena's second birthday we found out she had Eustacian tube dysfunction. Which means her eustachian tubes arent big enough to drain liquid out of her ear so her eardrum pulls back into the ear causeing her to have approx a 50 decibel hearing loss. She proceeded to have her adenoids shrunk and her first of three sets of tubes.

 At two and a half Alena didn't seem to be doing as well. She was getting more tired and was still struggling to learn how to walk. She would walk about eight steps and fall down in exhaustion so we talked to the cardiologist who did another catheterization to see how her heart was functioning. Although it was on the low side he said it wasn't acute enough to call for immediate surgery but since she was not doing well developmentally we decided to consult the surgeon who thought it was a good idea to go ahead with the surgery. It turns out it was a great idea, the day after surgery Alena was trying to walk laps around the nurses desk. I guess she felt better.

Since then Alena has grown, started preschool, learned how to use sign language, gone through several therapists and become an adorable little girl. Alena has also had her tonsils out , two more sets of tubes in her ears and two sedated MRIs.

  She also became a big sister in 2010 and loves her brother more than anything. They really have a bond like no other.

Alena is five and a half years old now and she needs her next surgery. This surgery is to repair her tricuspid valve and to replace her pulmonary valve. She has become gradually more tired, less physically active and has a harder time focusing on things.

Her cardiologist recommend this time rather than staying in Phoenix and having her surgery at PCH we travel to Stanford's children's hospital, the Lucille Packard Children's Hospital or Packards for short. The surgeon there is Dr Hanley and is supposed to be one of the top surgeons for children with complicated hearts.

 Alena's surgery is scheduled for the 15th of June and we have found out its pretty price to fly/stay/eat especially considering its in northern California. So this is what I'm asking... I'm getting ready to start some fundraisers locally and over the Internet doing raffles, auctions and maybe even a pizza party. Please contact me privately if you want to donate to Alena's cause. Any donations we receive that exceed our bills regarding our travel expenses will be donated to a local foundation that helps to support parents with children with heart conditions.