May 11th...changed my life

May 11, 2006 2am...sent Ella to the nursery after she was about 11 hours old so that we could sleep between nursing times.

May 11, 2006 5am...nurse comes in to inform us that Ella has been transferred to the N.I.C.U. with seizures and abnormal breathing...and my whole world shifted. Joe prayed...we both cried...and we prayed a lot more.

The whole days seems like a blur. I may have to edit this after Joe gets a chance to read it...and reminds me of things that I've forgotten. I remember doctor after doctor coming in to try and explain what was happening with Ella. They were so unsure of what was happening with her that they were giving us very little information.

Sara's post May 11th at 12:30pm:

Ella is not doing well at all. She is currently in NICU at Medical City of Dallas. She does not seem to be improving so we need your prayers. Here is a little bit of the run down. Ella has become pale and has a yellow tint to her skin, seizures, she is rolling her eyes and moving to one side only, she is clinching her fists and has "modeling" which is when you can see all of the veins in her chest. She is in her own room in NICU and has a team of 7 doctors and specialist and 2 nurses. They have her arms splinted to keep her from pulling out her cords when she has the seizures. There is someone from Children's Hospital coming to look at her and run her spinal tap at lunch time. She has an IV which is feeding her sugar water and is on oxygen to clean all of the acids out of her blood. The two categories they are looking at are Infection which they are already treating her for with antibiotics, or Inborn metabolic Error which means Andrea and Joe's genes did not match for Ella. We pray for infection as they can treat it. If it is the other there are only a few treatments and it has to be specific to her condition. A waver has been signed for a blood transfusion if needed and we are standing by until the next doctor comes in. At this point they continue to run test and have ruled out heart and her CT came back good. Andrea and Joe have already been told they will not be taking her home with them and the nurses are trying to find a way to keep Andrea a few more days to be with Ella. If they do decide to transfer Ella to Children's, Andrea will be discharged and allowed to go with her.

4:30pm Update from Sara

Ella has been diagnosed and she has meningitis, it is treatable. They are still not sure what form of it she has but they are cautiously optimistic. Andrea is with Ella in NICU and although cannot touch her or hold her is able to watch over her.

10:30pm Update from Sara

Well Ella has taken a turn for the worse as of right now. On our way to see her tonight Andrea called and Ella had another seizure, which made her critical. It took all of a few minutes to have the seizure and took the doctors 2 hours to keep her from dying. She is not able to give the fight she needs to right now because her body is so sick. The doctors have her on antibiotics to treat the meningitis and are praying with us. At this point the power of prayer is her only chance. They have been very open with the family that she may or may not make it at this point. She needs a lot of help to continue fighting and needs the healing hand of God to make her better. She is having a blood transfusion done and they said she will get worse before she gets better. The nurse said Ella has had a lot of crashing (almost dying) today and she is having a hard time getting back to us.

May 11, 2009:

Ella is at Occupational Therapy right now with Katie (who she has had for 2 years now and we love Katie). Ella is probably playing with finger puppets and working on voluntary release. She might be sitting in her adaptive stroller (wheelchair) or Katie might have her sitting on her mat. She is probably in a room with only Katie, because she is too social to be in the big gym. She is most likely laughing and complaining. She may be "telling" Katie about her weekend and about her birthday party. Katie will be being patient with Ella as she tries to get her to work, but loving the fact that Ella is so amusing.

No, our life isn't as we had planned it, but God never really does things the way we thing He will. I'm not happy with Ella's condition, but I'm filled with JOY over where we are today in relation to where we were 3 years ago today.