Our beautiful girl is truly a miracle! At my 19 week ultrasound, it showed that her lungs and belly were full of fluid. After extensive tests, we discovered that she has CHAOS (Congenitive High Airway Obstruction Syndrome), which means her airway was completely blocked trapping fluid in her lungs.
This is very rare, so rare that there is not a lot of information out there on it. From the few websites that talk about it, it seems there is only one long term survivor as most people choose to terminate their pregnancies. I could not do that as I felt that I did not have enough information on the syndrome and that it wasn't my choice to make. I left the decision to terminate in God's hands. In the meantime, I asked for more testing - even though we were told she would not survive.

After lots of ultrasounds and an MRI, it was determined that the blockage in her airway was 5mm thick and at laranyx level. They didn't know if the blockage was soft tissue, cartilage, or bone - if it was bone, there was nothing they could do. My baby was so active in my belly that I knew in my heart the right thing to do was move forward. I demanded more information.

At 24 weeks, they did an expiramental procedure in utero. I was told there could be many complications and we could lose her. I left this in Gods hands and pushed forward. When they put the needle into my umbilical cord to give her pain killers and a paralyzing medicine to keep her still, my 24 week baby reached up and tried to grab the needle! This surprised our medical team and we all had a nervous laugh! I knew at that moment that she was a fighter and she was going to survive! They put a scope into her airway and were able to poke a pin sized hole through the blockage. As soon as they did this, the fluid in her lungs started to drain out! By the next day she was back kicking like crazy and the ultrasound showed that her lungs were clear! She still showed massive amounts of fluid in her belly and we were told that it should dissipate over time. Now we just had to wait to see if she survived the rest of my pregnancy.

At 29 weeks, my water broke unexpectedly and after three days of bed rest, my daughter was born via C-section and the EXIT procedure. They operated on Lexi-Jane while she she was still attached to my umbilical cord and put a tracheotomy into her airway. She was less than 3 pounds and the tracheotomy was 1mm in diameter. They had to make one out out of mixed parts as trachs that small are hard to come by.

Our baby had to lay still on her back as whenever she moved, her airway would block and her heart rate would plummet. She was on a ventilator, and was kept comfortable with medication. It wasn't until she had her trach upsized to 3mm two months later that she started to move around without her heart rate dropping so frequently and we were finally able to hold her. We had been so paitent and when they put her in my arms, I never wanted to let her go. It was the best feeling you could ever imagine!

We have been in the NICU for almost 6 months now, and Lexi-Jane has come a long way! She is on a ventilator during the night as when she is in a deep sleep she forgets to breathe. During the day she has a humidity mask she wears over her tracheotomy which allows her to breathe moist air. We are still waiting for the last of the fluid to drain from her belly. She has a feeding tube which goes into her stomach - she does feed orally with a bottle but tires easily so we top her up with the tube. Her trach needs to be suctioned frequently, she is able to cough but the secretions get caught in her trach as it is so small and they need to be suctioned out. When she is one, she will have an operation to reconstruct her airway. Since the blockage is at laranyx level, we are praying that she will be able to speak. Once again, this is another expiramental procedure and we hope once again she makes history!

Lexi-Jane is the happiest little girl with the sweetest personality that makes you want to be near her. Our wish is to bring her home!

We are hoping that you can help us fulfill our wish. The past 6 months have been hard on us financially. We live two hours from the hospital and travel alone has eaten our savings. To bring her home, we need to acquire medical equipment and supplies. Even though the government covers some of the costs, they don't cover it all. We need to find money to cover our share of the ventilator, suction machine, the feeding pump, and all of the supplies that go with them.

We thank you from the bottoms of our hearts for any donations you can pass along. All we want is our daughter home with us!