A home for Katie
_____________
Katie s story begins before I got the call to come get her.

Katie is my sister's Ginny s youngest child.Ginny was delighted to have a baby girl even though she came earlier than she should have.I received many a e-mail telling me about Katie.My BIL sent me updates on how she was doing everyday while she was in the hospital and the first week she was home.After that they came once a week.After talking on the phone with them so often I traveled to go see her when she was 10 weeks old.My sister let me hold her!This was a big deal to me as most people would not have because they would be afraid I would drop her.I was very impressed with my sister and her husband after all they went through praying their little Katie would make it they let me hold her.At that moment I did not know that 3 weeks later I would get the call saying that my sister, her husband and son had died in a car accident.Katie and my Mom were also in the car at the time.Both my brother and I rushed to the hospital as fast as we could.My Mom was badly hurt and would need to stay in the hospital for weeks.Katie was unhurt, not a mark on her.The hospital checked her out and she was as healthy as can be.

What I was told next blew me away.My sister and BIL had left Katie to me.The letter, they had written when they updated their Will, was given to me by their lawyer.In the letter they stated they understood if I could not keep her but they wanted me to pick Katie s new home if I could not and that they wanted me to be able to visit her.The lawyer, my brother and the hospital all agreed that that I could have a few days to decide.I phoned my friends back home to help me decide.

For most of you reading this there would be nothing to decide, the answer would be "YES!".For me it was not a case at all about wanting or not wanting Katie.It was a case of can I even do this, what would be best for Katie.I am a high functioning quadriplegic living alone but in a independant living arrangement with friends who are also disabled.So this would affect them as well.We talked it over. They were willing to try.Harold who is also a quadriplegic agreed to set up a meeting between me and disabled parents who had given up their kids via open adoption so I could ask them questions.After talking with them I realized I could not give away Katie without trying myself.We as group came up with the plan to keep Katie till she is six mouths old and then decide if we could meet her needs, they would all become her extended family.

Arrangements were made that I would keep Katie.My brother would stay with our Mom till she could be moved, She would then independentsing home near his home.You may wonder why my brother was not chosen as Katie s guardian instead of me.My dear brother and little kids are not a good mix, he is great with older kids though.

I got as much of Katie s things from her parents home and had more of them shipped.I knew Katie was breast feed and that Ginny had pumped some to have on hand for when she went back to work.A call to the hospital to find out how to pack breast-milk was made.After everything was packed it was time to pick up Katie to fly home with me.Sitting on the plane flying home douts on whether I could really take care for Katie.It is Katie s feeding time and I have to ask the attendant to get her bottle out and warm it.After the bottle is warmed I realize not only are the splints I wear on my hands the wrong size to hold a baby bottle but that none of the ones I have will hold one.So in-order to feed her I rely on what works that I have, my teeth.Thanking the flight attendant for warming her bottle I ask him to hold it so I can grab the bottle edge of it with my mouth then use my wrists to nudge it to best position to get Katie to drink it(thankfully she does not have a problem with this).She is now sleeping in a carrier attached over my neck.We land before I know that she also needed a diaper change.

My friends are waiting for us at the airport.I am so relieved that my friend Linda came with Harold to pick us up.Linda comes with me to the ladies room while Harold waits with a porter to get our bags and the milk I paid extra to ship on our plane(the hospital arranged this for me).Linda is blind but her hands are mine to use as much as my eyes are hers to use.Guiding her her hand to Katie then to the release clips on the carrier she has her out quickly.Linda changed her and then carried her since we could not get Katie stuffed back in the carrier.We had arranged for a loaner car seat though the hospital which my friends had picked up and installed in my van.Okay, buckling a skirming upset 3 month old into a car seat is not easy.Trying to do so by feel we learned is another.Harold and I are trying to help by telling her right left is not working.Finally it did.

Once home, we called a friend to come over to set-up Katie s travel bed and we put all the frozen breast milk in the deep freeze the way it had been at my sisters.Counted out there was enough for just over 7 weeks so we would have to get her on formula by then.We had an appointment with a pediatrion that my Doctor recommended the next morning to answer any questions.

Doctors visit the next morning was different than I thought it would be.He gifted us with diaper bags from two different formula companies.Sure he weighed and measured Katie which is what I expected but he was more interested what my limitations are than Katie.He asked how much hand grasp I have( my hands do not work) and how much movement I have(shoulders, biceps and partial wrist movement).I ended up asking why he was more interested in how I was than Katie.His reply "Well, anyone can see she is a healthy breast feed baby, no problems there".Then he went on to say "You are her source of comfort and parenting now, together we can keep her as healthy as she is today"."For her sake I always ask about the health of the family".He then gave me guides on everything he thought I would need to know and his pager number.

After her appointment we stopped at a place for disabled adaptive equipment since I was in real need of help.The first thing I needed was a way to diaper her without pins or tape.I thought velcro would work okay since I use it on many things.That settled, then splints that allow me to hold her bottles.A carrier that I can work was next along with a baby harness so I can pick her up without help.

Once home I fixed her two warm bottles one of formula the other of breast milk from her Mom.One sip of the formula and she screamed her lungs off! I thought Oh No it is too hot.Looked in her mouth expecting to see burns or redness, nope.tested both bottles for temputure again both were fine.I gave her a sip of the breast milk bottle not a problem.Then tried the formula again, this time she screamed louder.Okay, she does not like that brand, I thought no big deal she will like the other one.We will just say by the end of the week I was questioning ever finding anything that tasted good to her other than breast milk.

Week two
I was back at the adaptive center after searching the web to find a diaper I could change without using my mouth.I had found out that other parents had loops sewn on the cloth diaper for easy grasping with splints.Got it home and it worked with just splints- no having to grab an edge of velco on a diaper to pull up enought to start it, Yes! This week I would try diluting breast milk with formula to try to stretch what we have.Anything more than 10 drops to 4 ounces and Katie screams.Now I am truly worried.I called everyone I could think of to ask their advice.My friends and I sat down to discuss that we may need to find her a home where with a Mom who is already breast feeding a toddler could offer her what she truly needed.

I was searching every e-mail my BIL sent trying to find anything that would comfort Katie.Found many comments on kangaroo care.Looked up what it was and spent week two with her skin to skin as often as I could since she did not get as fussy.She was happiest when I let her use me as a human pacifier(she did not like any of the man-made kind).

Week three
Tried to get banked breast milk for Katie, was told no since it was not a medical need.Called formula makers to see if they had any others that might work.They each gave me lists of ones to try and one guy said to wait at least an hour before giving in and letting her have the other bottle.This was torture to me.I could not let her cry so I let my friends help me try to get her to accept the bottle.My brother came up with the double blind method of one person numbering each of 12 bottles and filling six with milk and the other six with different types of formula.His take was that she might be reading us as formula bad and milk good.He was wrong it just tastes different, she knew with the first sip.
After three days of her getting so upset with having to wait an half an hour (none of us could make her wait a full hour) for anyone to give her breast milk if she got one of the bottles with formula my body reacted to her crying.The front of my shirt was wet.I called my doctor to ask how this could be. He said it could be a reaction to her, galactorrhea or other causes.He had me go directly to the lab to get a blood test, then his office to be examined.He ordered a CT scan(head), a mamogram and an ultrasound of my breasts.
After two days I was told it was induced lactation and he pointed me to a couple of websites about it.He set up an appointment with a lactation nurse for the next week.Told me it was okay to try to nurse Katie and to try pumping since Katie was willing to take a bottle.He asked if he could tell his wife so she could help me with nursing issues.He said if I wanted to try to breastfeed Katie he would help me any way he could.He told me not to worry about formula anymore just to give her a bottle of her Mom s milk then let her enjoy a breast till she falls asleep.Then try to pump and see what you get.

Got home and talked with my friends who were wonderful about this news.They were there for whatever Katie or I needed.All smiles the guys even volunteered to do the pumping for me.
The first few times pumping I got an once to two onces each side.
My doctors wife calls me and offers to come over to help me make sure Katie latches right.Katie does.After Katie is asleep she helps me with the pumping telling me to follow Katie s way as for pumping speed.She said to think about not having to hear Katie scream because she is getting what she wants instead of formula.That worked and I pumped 4 ounces each side.This is the day I contacted Lenore by e-mail with questions(an angel on call via e-mail)