We know the love that God has for us,
and we trust that love. God is love.
Those who live in love live in God,
and God lives in them.
I John 4:16

Elizabeth's Story, born October 23, 1994 and adopted as a newborn infant with the same diagnosis as Melissa has come to live with us in January 1995. We are aware daily of God's hand on this child. She has had two surgeries, in February and March 1995, and has some difficult medical problems over and above the hydranencephaly. She was a 27 week baby so she had a difficult start without the primary diagnosis that threatens her. She had so many things against her that I feel God has a plan for her or she would not have lived long at birth. Her teenage parents were unable to care for her and she would become a ward of the state (although the state refused to help this couple unless they neglected or abused their baby). There was every reason for some to feel she was not compatible with a good quality of life.

In January I traveled to Colorado to pick her up from her young parents. They cried and thanked me for being willing to take her. They commented that they knew she would be loved. They held each other and cried. I cried and Elizabeth and I rode away. Immediately there seemed to be a bonding. She is our baby for how ever long God allows.

We took her to the ER in February and the staff were concerned that maybe we didn't understand her condition, and that when we did, we would probably not want to treat her. Right!! This infant was not getting enough nourishment and I was asking for help before she became too weak. I was able to contact the doctors that had taken care of many other babies for me. When they arrived she was stabilized with IV's and scheduled for a gastrostomy, for feeding her directly into her stomach. Even then one of the original doctors explained that she felt I was putting Elizabeth through too much when she would never respond anyway. Would I consider just 'letting her go'? She quickly told me 'she didn't mean to not feed her, 'just let her have what she could manage to take by mouth, which was at most a teaspoon full, and she would just slip away before long. Needless to say, I don't feel that withholding what is so readily available to help her was appropriate. I deeply believe God will take her in His time. Be that today or 20 years from now. I am responsible for giving her the love and good care God intends for all of us.

"Thank God I am not judged on my abilities and intelligence but on my worth as a 'Soul' created by God.

I want that for all children. No matter how unworthy and undeserving we are, God takes us in His arms and protects and loves us unconditionally. Elizabeth deserves no less.

Our job is to care for all His children with dignity and respect and to give God all the glory."

March 1998, Elizabeth is now 26 pounds and 28 inches long at 3 1/2 years old. She is still at a 3-6 month level. She is generally happy and will sleep for 2-3 days and nights and then stay a wake for 2-3 days and nights. (She does not have an inside clock that works) Of course she does not have a body temperature regulator either or any growth hormones or thyroid to function. No kidney regulator nor any eyesight. However, with some very new treatment with medication some of those functions have been replaced. She is tube-fed and with the surgery had a procedure that keeps her from vomiting her formula which is infused by a pump over a long period of time each day. Her physical therapists are amazed at the enjoyment she gets from the exercise and attention. She coos and smiles and very seldom cries. She likes her peek-a-boo big bird and her horsey that whinnies. She is holding her head up for several seconds and 'looks' around. We still keep music on all the time and she really seems to know. One of thr hardest problems to control is her Diabetes Insipidus and her sodium levels.

March 2000, Elizabeth is now 5.5 years old and just spent 6 weeks in ICU...she had been on oxygen for several months and has a trach, but she came home last week on a ventilator as well. When she was put on the vent is was just to help her with the distress she was in, then we found she couldn't come off.

November 2000, Elizabeth has recently celebrated her 6th birthday! Are we blessed or what! She has been extremely alert and smiles a lot. She even appears to listen when someone talks. It is like she may have been in some level of a coma for many months.

July 2001, Elizabeth is now off of the vent during the day as tolerated. She is on 40% oxygen and the vent at night and if she is tired or not feeling well. This is progress! She has a new wheelchair that is like a big stroller that accomadates transporting her vent and oxygen. it is quite nice. It has a cheerful yellow frame and navy fabric. We are concerned about her weight as she is 55 pounds. With her growth hormone deficencies and fluid balance problems from diabetes insipidus her weight is extremely hard to control. We are working on it. Elizabeth is our 'cabbage patch doll' as she has chubby cheeks and a sweet smile.

June 2002, Elizabeth has gone through several months of not being able to be off the vent much but last week she tolerated several hours on several different days. We have to keep trying to wean her off as Medicade does not like the cost of vent patients. We want her off as well just because that would be progress for her and she would be less confined . Sometimes it seems Medicade thinks we are not trying to wean her fast enough. Elizabeth is 50 pounds and seems quite content ...She can 'growl' over her trach (which prevents much sound from escaping her) ...that is how she lets us know she wants someone. You have to see and hear it to understand how cute it is. She is a real character...she loves flavored lip gloss....especially chocolate...hmmmmm just like her mom. :)

To learn more about Diabetes Insipidus and Hydranencephaly visit:

Diabetes Insipidus
Hydranencephaly
National Institute of Neurological Disorders: What is Hydranencephaly
Suport Group for Patients with Hydranencephaly

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