We were blessed with our second child Isabella on 04/30/14. She weighed 6 pounds 4 ounces and was 18 inches long.
In her first few days at home and in the hospital she was not feeding well and was very sleepy. She started losing weight fast and was jaundiced. We took her to boston children's hospital at one week old and we were admitted to the general pediatric floor. They ran an MRI and blood work and all came back normal. We were so relieved but had no idea what was in store for us. One night on the floor she was having episodes of dropping her oxygen levels and the doctors were very concerned about this and sent her to nicu in the middle of the night.
In the nicu she was having the same episodes with dropping her oxygen so she was put on a nasal cannula and seemed to do a little bit better. We had an amazing nurse who helped us through our journey of figuring out what was wrong with Isabella. She is amazing and a god send. She was suspicious that Isabella was having seizures and told the attending and neurologists that they should test her with an eeg to see if she's having seizures. The first time she dropped her oxygen the neurologists came down and confirmed she was having seizures and immediately started her on phenobarbital which sedated her for 4 days straight and she was still seizing so they added another med called keppra which kept the seziures away for a whole week. After 3 days on the eeg, they had a diagnosis.
Nothing could prepare us for the diagnosis we would receive. They said she had a rare form of epilepsy called Ohtahara syndrome which can cause 100-300 seizures a day and are usually not controllable with medications and it is NOT curable. And the WORST part of it all was they said she will most likely die before the age of 2.
She did good in NICU and was sent to the neurology floor for a week where they were they were getting ready to discharge her. However, she started having more seizures and needed a Valium to stop them. The Valium caused her stop breathing and she was in cardiac arrest. They'd had to call a code blue for her and resuscitate her.
Isabella is 5 weeks old now and is continuing to fight for her life in the ICU. She had to be intubated because she is still not breathing on her own. The doctors are currently working to find an answer for her breathing but it's a long process. In her short 5 weeks of life, she has had an MRI, ultrasound of her head, 5 lumbar punctures, 2 different types of feeding tubes, 5 EEG's, an EKG, a PICC line, and uncountable amounts of blood draws, urine cultures, and X-rays.
We are hoping for the best but preparing for the worst. Doctors don't think she has much time left if she is not able to breathe on her own when they extubate her. We know that it's ultimately out of our hands and in God's hands at this point. All we can do is cherish every moment and make memories with her while she is still here. She is such a fighter and will always be our little angel.
Funds will be used for medical expenses not covered by insurance and funeral costs. Thank you in advance!
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