My Maddie Girl,

I wanted a baby girl forever.  Mom and Dad decided that once we moved to Norwood we would attempt to have a baby. 

Almost 10 years after having your brother, we were blessed with the conception of you.  From the start Mom had a bit of bleeding around Christmas time and spent most of the holiday season on bed rest.  That was a scary time.

I saw Dr. Nusz pretty often for the next 9 months.  I was high risk pregnancy because of my age (39) and I had high blood pressure. 

I had many sonograms for different reasons.  Toward the end of my pregnancy the sonograms were because the Dr. said you were a really big baby.  So big that when I was 39 weeks pregnant, the Dr. decided I should be induced.  Also because I was border line diabetic.

I was taking my blood sugars 1^st thing in the morning and after each meal.  That wasn’t too bad to do IF I ate the correct foods.  Most of the time I did so you wouldn’t get the wrong kind of nutrition. 

07/31/03 rolled around.  It was time to go to the hospital for the induction.  This would be Thursday night.  By Friday afternoon I was hopefully going to be dilated and ready to meet my wonderful new baby.

At 9:30 that night you were not dropping into the birth canal to be pushed out of Mommy’s body.

Dr. Nusz said that it was time to get me prepped for emergency c-section.  By then, I wasn’t even scared, I was just tired.  Let’s go get a c-section.

Once down in the operating room, I was met by the doctor, a couple of nurses and a really sweet gentleman.  The procedure seemed to take only minutes. 

We were so surprised when the doctor announced “IT’S A GIRL”.  We were so thrilled, we cried.  The nice man in the room wiped Mommy’s tears away and told me how he loved wiping those kinds of tears away.  I thought that was so sweet. 

Daddy rushed out after a few minutes to tell your big brother that he had a new baby sister.  Travis was so excited.  He was the first to hold you.  What a great moment that was for us all.  Travis spent the night with us one night at the hospital too.  What a great family.  We named you after Grandma Huffman who went to heaven in 2002.  I have loved the name Madison for as long as I can remember.  Welcome to the world Madison Claire-Elizabeth Vickers.  9lbs 3 oz, 23 inches long.  You are just beautiful. 

We spent about 2 days in the hospital after you were born.

Three days after we went home, Mommy rolled over to find you in your cradle having difficulty breathing.  It appeared as though formula was coming out of your nose.  Daddy was just coming home from work.  Lucky for us because he suctioned your nose with the bulb syringe.  Mommy had to call the life squad.

When the squad pulled up, Daddy ran out and they drove away.  The neighbors drove Mommy and Travis to the hospital.  You had to stay overnight for observation.  The doctors said you had acid reflux and you went home the next day.

06/17/04

You were brought to the hospital by life squad.  You were breathing too rough.  Daddy called the squad and we went to the hospital. 

You were admitted to the ICU area with your right lung collapsed.  This is extremely serious because you have SMA and you need your strength to survive.

The doctors put you on the bi-pap machine continuously for the next 24 hours.  They wanted the pressure to pop your lung open.  And guess what??? It did. Thank you Lord.  But the X-ray the next night showed an area in you left lung. 

Saturday after you admission to the hospital, was the day I will always remember.  Not in a good way either.  While giving you your cough assist treatment and alternating with the bi-pap machine, your heart rate dropped very low.  The doctors were working diligently to get your stats back up to an acceptable level.  They were unsuccessful.  The doctor told Mommy and Daddy that he would need to intibate our little girl to save her life.

Mommy was screaming and crying.  I don’t want my baby to live on a machine I proclaimed.  I told the whole room full of medical professionals how I wanted you for 10 years.  I didn’t want you to live on a machine.

I guess at that time I didn’t realize it is possible to be weaned from the machine once on it.  Nevertheless, they inserted the tube and you were breathing with the assistance of the ventilator. Bummer.

My baby is the exception to the rule. She is not going to be like the other SMA babies.  You have already proven that you are strong and full of willpower.  Just keep that up sweet girl.  I hope you know just how much you are loved.  You are so very special.

06/28/04

Well Madison, today was an awesome day and a scary day all rolled into one.

This morning Dr. Kalra told us you X-ray looked better than yesterday’s.  He said he would like to see us taking your bi-pap mask off for 5 minutes at a time.  We should do this after completing your cough assist and suctioning procedures.

The first time we did it, it was awesome.  When Mommy asked you if you wanted her to hold you, you reached your little arms up to me.  I held you and your oxygen number on the monitor went right where it was supposed to be at 100.

What a feeling that was to hold you without all the yucky mask on your face.  You smiled at Dr. Kalra too when he spoke to you.  Pastor Pike was here at that time too.  He told God when we prayed later that day, how wonderful it was to see your sweet little face.  He sure is right!

Later today, you stats went down and we needed the doctors to rush in and help clear your secretions from your throat and give you some oxygen. 

That helped bring your heart rate up to the number it should be around.  140 -150.

This evening when Travis, Kevin and Jennifer were here the same thing happened again.  Daddy knows just what to do when we see those numbers drop.  We are very proud of Daddy.  He has been staying here with us at night sleeping on the hard, cold floor.  He sure loves you A LOT, we all do!

07/07/04

Maddie, you have just completed your first 24 hours in the transitional care unit of the hospital.  We moved out of ICU yesterday.  You are now using a nasal only bi-pap machine.  We give you 1 hour breaks after you cough assist treatments.  Your treatments are every 3 hours in the day, and every 4 hours at night.  Next Monday, Dr. Kalra would like to see you with the bi-pap off between the hours of 9-12 and put back on at nap/bed time.  Daddy spent the night with you last night.  He said you slept well.  Dad said that this morning you were fighting you bi-pap machine because you didn’t want its help.  You wanted to breathe on your own.  That is awesome.  I am not sure what the doctors think about it though. 

As I am writing this it is 3:40 a.m.  You have been back on the bi-pap for 2.5 hours.  You have moaned and cried the whole time.  Mommy sure wishes there was something she could do to make it all better.  Or at least make you more comfortable. 

Your hair is now so sweaty that your sheets on your bed are wet too.  You are working so hard against this machine.  I am so nervous to know what doctors are going to say at rounds tomorrow morning.

07/10/04

You are still fighting the bi-pap.  You hate it and I certainly don’t blame you. 

You slept OK last night.  Better than the night before though.  Dr. Kalra had the rate put down to 12 with the understanding that the therapist would gradually increase (up to 20) during the night. 

At 2:30 a.m. I asked Denise (RT) if she had increased you yet.  She said she forgot.  Once after that she came in and bumped you bi-pap up to 14.  Dr. Kalra isn’t going to like that at all. 

You are up to 2 hour windows off the bi-pap machine today.  This morning you fell asleep after 1 hour off.  When you are off the machine, you are so happy.  You patty-cake, give 5 and wave your hands two different ways.  You can say Elmo now and we are teaching you to say Nana.  Sometimes I think you say it, other times I think we need more practice.  You are a smart girl. 

X-ray came back normal…Thank the Lord.

08/02/04

Yesterday was such a joyous day.  We all celebrated Madison’s 1^st birthday.  This morning around 10:30 a.m. that all changed.

Daddy had just gotten home from a court appearance for work.  He went downstairs to get some peace and quiet.  Travis had cousins Alex, Tyler and Zachary spend the night.

Mommy and Maddie went into the living room to do the cough assist machine like we do every morning.  I did 2 cycles and I knew something was not right.  Your whole face turned white and it appeared as though you couldn’t breathe.  Uncle Terry came to pick up the boys.  I sent Travis downstairs to get Daddy.  He came up and immediately took you out of your car seat and laid you on the floor.  He asked Uncle Terry to take the boys outside.  Daddy began doing CPR on you and I called 911.  We were all hysterical.  Daddy did a fantastic job helping you breath.  By the time the medics arrived you were crying out loud.  What a great sound that was. 

We were to stay overnight at the hospital for observation.  However, by Tuesday night the doctors said that the blood gas numbers were all bad.  They said you had to be intibated right away.  Which we allowed them to do.  By Thursday, the doctors said it was OK to remove the breathing tube.  Unfortunately, you couldn’t keep your stats up. 

On Friday, while Mommy went home to spend time with Travis (I picked him up from Alex’s house) our Maddie had to be reintubated.  That was August 6, 2004.

We have had a couple of meetings with the doctors.  They informed us that you amazed them by coming off the vent in June.  None of them thought you could do it.  I am so happy to report that you did.  You showed them all just how very strong you are.

Well it has been 19 days since we last came to realize that the doctors wanted to reintubate you.  We know it is not possible to continue your life this way.