What could be wrong....

was this going to be the beginning of what was to come???
Oh yes.  But of course I was not aware of other problems with Andrew till day 2.
Day 2 still no poop.
Not good.
 In he went for a x ray. He came back from x ray to vomit up stool. Oh my God what was wrong with my son.  They gave him another enima and still after a few hours nothing came out.
The doctor now wanted to see us.  He said what we think Andrew has is a bowel disease called Hirschsprungs.  Its were there is a lack of cells in the bowel line. Kinda like kinking a garden hose and the stool can not move passed it. 
The wanted to take Andrew into surgery right away.
My head began to spin.
WHAT, Hirschsprungs, there was only a 4% chance he could get that. I said.
He can't have that I said strongly to the doctors.
They looked puzzled. 
I said it again in case they did not hear me right. 
"he can't have that... I did not research that disease and I don't know how to deal with this."
Next the doctor explained Andrew would have a colostomy.
Dear God.....what the hell was happening with my poor son.
a gross ugly stoma on his belly and worse yet this would be for life.
I began to feel dizzy and nauseous.  I was so scared.
They reassured me it was manageable and that we would be taught how to deal with the colostomy bags and cleaning ect.
I remember this all feeling surreal.

I was suppose to get a baby with Down Syndrome and a curable heart defect.  Now the rules were changing.  I was not sure I could handle this. What about Kent could he cope?
He was being so closed mouth. No tears, no fear, nothing like me.  Why?  How was he coping, or was he just NOT coping at all.
Kent reassured me that we would deal with what ever came our way together.

Now looking back at that time, I felt so alone.  It was like the time in my life when my mother had committed suicide.  I did not know anyone who had lost a parent to death, let alone suicide.
 Now looking back Kent hid his fears from me. Feeling he could not break down for fear I would lose it and never recover.  He felt he had to be the strong one.  I only wish now that he had expressed his feeling of fear to me.  For that was the beginning of the time I began to resent him.  Little did I know the resentment would build for 4 years till it would cause me to want a divorce from him.
But that's a totally different story for another time.

Andrew went into surgery and he developed a serious infection in his PIC and Central line IV's. 
This would halt the open heart surgery for 24 days until they could give him a series of antibiotics to cure him.
Now this would not be such a issue but Andrew needed to have a part of his heart stay open in order to get enough oxygen to his lungs and heart.  The medication to help him keep his PDA open was not used for the length of time normally that they needed.  This was his only option so we prayed it would work.

My son is the most amazing human I have ever known.
More to come.

back to tell more.....

Andrew was born on May 5th 2004. What a wonderful day it was to finally see the Angel God had in trusted me with.
I delivered him by c-section at Norfolk General Hospital.  They transported him to the children's hospital right next door.. It felt like he was so far away from me.  I was suppose to stay in bed for at least 24 hours, but I refused. I wanted to see my baby.  I made a big fuss and the doctor was called. I got my way and Kent wheeled me over to see my son.
I felt my head swirling I was still on pain meds and I was feeling very dizzy, but I could not let anyone know, or back to bed I would go.
I held on knowing I would be able to touch and see my baby boy.

We got to the NICU and we were given gowns and told to take off all our jewelry and wash to our elbows.
I remember feeling to scared.  Why was I so scared?  I guess I was not sure what he would look like now that it had been 6 hours.  Would I be a good Mother?  Would I know how to care for this little special baby?
What I saw was this helpless little creature lying there looking up at me.  He was beautiful. I mean like nothing I had ever seen.  I began to cry as i saw all the wires and tubes all over him.
I was sitting in the wheel chair and I had to stand up to see him fully.  I stood up and wow I felt dizzy. But I had to not look it. 
I wanted to touch my son. I wanted to hold him.
The nurse came over. Her name was Katie. She helped transport him over from the hospital and told me he was a sweetie pie for her.  I liked her right away and felt some calm come over me. 
She asked me if I would like to hold him.  I shook my head and tried not to cry.
She took him with all his wires and tubes and put him in my arms. I think I never had been so still in my life. I was afraid to hurt him. Maybe a tube would come loose or a wire come off and I would kill him.
I was over reacting.
Kent then held him and I was jealous. I wanted to put Andrew back inside me to protect him. I was in awe of all the other children in the pod. There were babies within the room but only one other set of parents. Where were the Moms?
I was feeling like, "well I am not leaving my baby".  I had no intention of leaving until he came home.
But that was not to be.
This was just the beginning.

The care plan was to next meet with Dr. Barnhart and talk about the time for open heart to fix the heart defect TOF with Andrew.  Problem was that he still did not get rid of the stool in his body.  He would need that to happen before surgery.
Here we go, I thought.
Dear God what could be wrong now?

just ramblings....

  The fall weather makes me have many memories, some good some bad. It seems as though the trauma that happened to me has all happened mainly in the fall.
Today I feel like writing about Andrew.

It sounds kinda of mean in a way for me to consider Andrew as part as my life trauma, but in many ways he has been.  But most of all he has been the best thing that has happened to me.  All my children have been a wonderful addition to my life. But Andrew has made me change the most. To learn the most.

I found out I was expecting Andrew around Labor Day weekend of 2003.  I felt there was something wrong with him while standing in the mirror after a shower. It was late October and  I was just beginning to show and as I stood there, I heard this voice tell me, that he was a boy and that he would be okay, but that he has problems.
I tried to shake it off, but I couldn't.  I didn't tell Kent but I called my Aunt Lucy and told her what I was feeling and about the what I now know was the Holy Spirit telling me about him.

I remember thinking all I wanted to ever do was give Kent a boy and begged God to let him be okay.
I held in the feelings to myself to the point of wanting to burst.
I remember trying to make deals with God. Deals....what was I thinking. I wanted a perfect baby, just like every other Mother, but I also wanted this child to live.  Many times I thought what could be wrong with this baby?  I never thought of a genetic disorder and I am not sure what all I thought about a disability.
I know I thought of my sister Gina and how she had a learning disability. I recall having to help her with homework and over and over helping her to learn to drive.
I had this love for her and patience too.  I wondered if  I would have what it took to be this babies mother.

December came and I had my first ultrasound.  This was at 17 weeks and I could find out what the sex of the child was.  I already knew in my heart it was a boy.  I went in alone. Kent could not get the day off to come with me.
I asked my Aunt Lucy to come with me so she could watch Chloe while I was in the ultra sound.  The tech was quiet and then said it was a boy.  I told her his name will be Andrew.  She took some more pictures but would not let me see the screen. I knew in my heart that she was hiding it from me. But I knew ....I knew.

The tech told me that Dr. Martha would want to see me, to wait in the waiting room.  Why didn't she come into the ultra sound room like she had in the past?
My heart sunk deeper. Lucy asked me what was going on and I told her the doc want to talk to me before I leave.
I was called into her office and as I entered, Dr. Martha was sitting there with tears in her eyes.
I wondered dear God what was wrong. I thought she was going to tell me a Patient of hers had died or something. Why I thought that is still unknown to me. Maybe it was my way to calm my self.
She looked at me and Said "Lisa I am sorry, this is not a viable pregnancy."  What? What did you say?
I don't understand what your saying to me. Viable??? What the hell is that?
She came around the side of the desk to hold my hand. I pulled away. I was getting upset.
My heart began to pound and my face began to get numb and tingling.
I recall this feeling all to well for it was the feeling I had when they told us they had found my Mother dead by a self inflicted  gun shot wound.
In fact it was the exact same day 20 years earlier I had heard the words, your Mother is dead.
"God would never make this the worst day of my life again" This is Gods way of telling me this baby is going to live", I told Martha.
She began to tell me all that was on the ultra sound. He has cysts on his spine, cysts on his brain, fluid around his heart and fluid around his brain, she said.  This baby will not live, she said.
I was just numb.  She then said if this child lives he would have no quality of life and be a huge burden on us.
She has seen this in the past and it never has a happy ending. She told me I should terminate the baby.
WHAT? Kill my son...not only No but Hell No.
My mind had already been made up, go thru this pregnancy as planned to the end. If God wants my son back he will have to take him.
Martha heard me loud and clear. She made arrangements with a specialist and a genetics dept to talk about disorders and issues.
I called Kent right away and he came right then to the office.
He was on the same page as me.  We would take our son in any way he came and we would love him all the more.
I need a break from this and I will follow with more soon.

Feeling better today

Feeling much better today.  I think all the rest helped me out a lot.
Got my medications refilled and back on track.
I wrote in my journal, stuff I don't feel comfortable saying here. It was helpful I think to vent.

Chloe is having a few friends spend the night tomorrow, so we will make home made pizza...yummy.
I took her to see the orthopedist today and he found nothing wrong with her hips and back.  He and the tech saw some gray matter in part of her hip that does not have pain, so we will just watch for fevers or any pain there.
He does not see any reason for her to be adjusted 2 times a week.  I agree. Its too much on her little body he said.
I am sure Doc Steph will not be crazy about his comments but I don't care.  I am not exactly happy with her anyway so, her option does not ring with me right now.
I hate when you give someone the benefit of the doubt and they use you anyway.  She is not the person I thought she was.  I look forward to getting my down stairs rooms back.
( I let a so called friend move in here in Feb for a few months, that has now turned into her conducting business in here and taking advantage of our goodness) (I put the squah on it before I left for NY) She has till Jan 1st to move out. Hopefully she will move out before then.

Kent has been extremely helpful and loving to me thru this time.  I am so lucky to have such a wonderful husband.  I can not imagine my world without him.  He is very patient almost to a fault.  I love how he never yells at me.  I have another friend who's husband yells at her and the kids and she never gets any warnings.
I would hate that.  I use to live that way as a child and I hated feeling like I was on pins and needles all the time.
I am so happy my husband is not like that.  Well I would never tolerate that kind of behavior anyway.
I asked her why she doesn't divorce him, but she really can't because she doesn't have a job and she has a special needs child whom gets ill often and she has to stay home with her.
I understand her frustration because it is hard to plan anything like a job with kiddos like ours.
Its kinda like flying by the seat of your pants in a way.  Andrew is stable right now, but if he gets sick this winter it will be interesting to do all the care alone again.
Unfortunately he gets asthma issues with a slight cold and aspirated pneumonia many winters.
I am praying he does not get the flu again this year.
He will be getting the H1N1 and flu vac this year.

Well I am going for a walk with the kids its nice outside.

Today is a blah day

I think because I messed up my medications a little and adding new diabetes meds, I feel a little blah.

I called the Doctor and she called in a refill for me right away.  I never ask her for emergency meds like that, so she was nice about doing it.  She also was concerned.  I see her for an apt. on Oct.8th so I guess we will talk more then.
I have felt a bit off since I came back from NY.  Seeing my old friends made me miss them more now that I am gone. But it was wonderful to see Monica and spend so much time with her.  I love how we think so much alike on so many things still after all these years.
I felt bad for Bill as his dad is being placed in a nursing home and is not doing so well.

I got to see my Nana which was wonderful. Seeing my Father was okay.  I think back at how for so many years I thought I would say all this stuff to him out of anger, but honestly when it came time to be face to face with him after 20 yrs, I just said hello and hugged him.
He held out his arms first, so I went over and hugged him.  I felt like I was hugging a stranger. I am surprised nothing came rushing out of me. I guess because I forgave him for all the abuse and gave it all to God, it really did make a difference. 
You know how people tell you forgive and give it up to God.  It really works.
Not that I am surprised at that so much as I guess I am proud of myself for REALLY completing it.  You can say your forgiving someone, and deep down it really still hurts and you want to hurt them some how.  I am just amazed at how well this has worked for me.
I know I am running my sentences together, I don't claim to be a good English major. LOL

I did not see my sisters at all, and had no desire to either. That's odd isn't it?  I mean I should want to have a relationship with them, but I don't.  They all live in the past and I don't.
 I live in the now. Its so much better and happier here.

I hope that by getting my medication straight I will feel less anxiety.  I want to do some many things all at once I feel overwhelmed today. That's why I am writing.  I figured this would help me sort out my thoughts.

We will no longer have our Nanny so all the responsibility is back on me. No breaks.
Maybe that's it. I finally got to where I felt like I was organized in my time and now, boom...switching.
I won't be able to volunteer at the DH office on Fridays like I once did and I have to figure out how to be at OT for an hour and be home for CHloe' too.
This must be it as I am getting upset thinking about it.  okay okay I am just going to put down some of my rambling thoughts and not worry about the grammar so I can get though this.
I remember being anxious during the time we were getting ready to move here. There was so much to do.
I had the help of the older ones but I still held all the strings.

We are not moving and I have no stress, so what the hell. God please take this feeling away from me. I hate having my heart pound out of my chest like this.
I think I will get my stuff and go for a walk before I go get Andrew.
Sounds like a plan.

Old feelings

Its odd how going to a place you have not been to in a long time brings back out feelings.  Some of joy and some of pain.
My trip to NY in many ways last week was both healing and painful.
I am having a real hard time getting back into the swing of things here and I can't figure out why.
I have a beautiful home and for some reason it is overwhelming me.
Maybe its just the size of it and when I was in NY things seemed so much smaller. If that can make sense.
Monica's home was small and filled with children's stuff.  I felt bad for her as I have help and my house is so big and I feel unorganized.  Weird to feel this way.

I loved spending time with Monica and only wish we lived closer to one another so we could help each other with our kids.
I know its sad that we live so far, but I would never move back to NY. No reason too first off, work is slim and taxes are just too high.
I love our home and friends.
Kent has a good job and I am able to care for the kids and volunteer sometimes.
Our Nanny just gave me a weeks notice. I knew she was looking for full time somewhere but honestly we are going to miss her. She was a doll.
I won't have the time I did before to volunteer.  I am sad to miss the Dream House office on Fridays but I have to be here for the kiddo's.

I am going to try to organize the house over the next two weeks when the kids are in school and get on a cleaning schedule.  Eunicia was cleaning the kids rooms and bath and doing the laundry but that will me on me from now on.
It will be fun getting the house together.  I have been needing to do some fall cleaning anyway. Try to get ready for the holidays.
I need to make a list of gifts I plan on making and get going on those as time allows.
I think I am going to give up on my Tuesday night class.  I need to spend more time here with the family.

Seeing my father at my Nana's nursing home was not as bad as it could have been.  He behaved himself and I even went over and gave him a hug.
He seems so much older and living in his good memories. I guess that's the way he copes.
I did not bring up the past as it was not the time but someday I am sure we will talk about the abuse he caused and the pain he inflicted on me and the others.

I was just happy to see my Nana. She looks so small and frail. Although has all her wits about her.
She talked for two hours straight giving me no time to interject a comment or two.
Its okay, she is very lonely and I plan on sending her a picture book with all the recent pictures of the kids.
She will love to share that with her new friends in the nursing home.
I will have to mail it to Dad and Judy so they can bring it up to her.
I plan on sending some treats for her too. Sugarless candy and some magazines.  She loves to read and I think I will even send some writing paper and stamps.
I only wish she would come down here to live with me. I know that will never happen.
Well time to get on with the day.....

Memories of my past

Just how many times have I thought of the past. I guess we have thought about High school and other times of fun. This weekend has been fun with going to my class reunion.
I have reconnected with some old friends and made some new ones too.  Its been nice hearing I have not changed, although I know in my heart I have.
I have changed into the person I always wanted to be and that is a good feeling.
Spending time with Monica has been such a blessing to me. We finish each others sentences still to this day.
She came to me with clothes so i could go last tight to the social and I felt great in her clothes. We use to swap clothes when we were kids too. Monica always had the nicer stuff though. Her Mother alwasy had this great sence of style that rubbed off on Monica.  Being a plus size woman I like to wear classic outfits. Monica always seemed to and even now has the best taste in clothes and sence of style.
I admire that about her. She has no idea how much I love and miss being with her.  Leave on Wednesday is going to very hard.
I got to see Billy and his dad is not doing so well.  My heart is breaking for him while at the same time I am glad he is living in the NOW and not hiding from his feeling.
I hid from the feeling of loss for my Mother for many year and it took a toll on my heart and soul.  I am so glad he is able to say good bye to his Dad.  I know later it will mean the world to him.

I miss Kent , Andrew and Chloe so much.  It hard not having that cuddle time in the morning with them. Although it has made me realize how much I have.
My friend Gina is going through being a single Mother and I know it is hard for her.  I only wish I could help her somehow.  If she were closer I could watch AJ for her.   She is an amazing friend and sweet person.  I am so glad we reconneted on FB and are going to spend some time together today.

More to follow soon.