2 years old

2 years old
Angle Face

Friday, May 6, 2011

Getting Through

Finding out that we were having a girl put everything in perspective.   I was starting to get excited about the idea of having another baby. I told most people I knew about her having Down syndrome so I could get everyone's support and opinion.  At 20 weeks we went for another sonogram and they saw a blockadge in her intestines.  That is also very common in babies with Down syndrome.  I thought they were just looking for stuff to make me think she has Down syndrome.  My childhood friend had just become and grandma and her grandson had just had this surgery and he didn't have Down syndrome.  Regular kids can have a blockage too.  They also saw something bright like a calcification maybe in her liver, or kidney but she was to young to tell where or what it was.  That's when they decided we needed to make the decision do we deliver at Alexandria and have her flown over to Children's to do the surgery or do I have her at Fairfax and they do it there.  We chose to do it at Fairfax so I could be with her after she was born. We then were considered high risk because of the blockage and were sent to Fairfax to Dr. Koury's practice.  Every week I made the trek to the garage search for parking and then down the flight of stairs and through the double doors and into the hospital to have my sonograms and fetal monitoring.  My mom went to my 2nd or 3rd appointment there.  Aaron could not go, although I have to admit part of me didn't want him there because I had not forgiven him for the "I just knew something is wrong" comment.

The sonogram was totally awesome, it was 3D. We could see exactly what she looked like.  She was beautiful.  I loved her soooo much.  I asked alot of questions and Tam answered them all.  She even said she shouldn't be saying what she was saying but she had been doing this for many years and she knew the baby had Down syndrome.  My mom said "Well, We believe in miracles!!!"  And Tam said "Well why can't Down Syndrome be your miracle?"  I have not had a day go by and me not think of that comment.  It was pivotal for me, maybe my mom doesn't even remember it but it meant to me that God wasn't angry at me and punishing me, but giving forgiveness and a blessing and a gift.  I accidentally ended up with the doctors paper work that day about where the blockadge was and the measurements and the possible club foot.  I read it over and over.  I tried to research everything on the paper and time and time again I could only find more and more proof that she did have Down syndrome.  I was scared about the surgery.  And I read everywhere they Down syndrome children almost always have heart problems.  That was the scariest for me.   

Every time I went to doctor, they would find something else wrong.  Aaron went to most appointments I went to some alone and the diagnosis stayed the same Down syndrome with a blockage. Now the decision who did we want to do the surgery.  You really don't get to pick it's just whoever is on call when you deliver.  Unless you are scheduled C-section then you kinda get to pick. We choose Dr. Ashkew just in case we really did get a choice.  I went in for my 37 week sonogram and Aaron tried to come but he couldn't find parking so I told him I was fine to just go to work.  The tech did the measurements 5 times and decided Maddison was not growing.  She had a retarded growth actually shrinking.  Dr. Koury sat me down and simply explained to me she was dying.  And that we needed to get her out as soon as possible preferably .... tomorrow.  Hmmmm Aaron wasn't there, I was all alone.  I started crying, really crying.  The Doc was like, oh no don't cry.  Okay, I'll try, I thought.  I texted Aaron under the table that they were taking Maddison tomorrow but no response, still all alone.  We set up the appointment for the next morning to have her taken 3 weeks early and I did the walk out of the building up the stairs to car where the walls weren't falling in and the sky was still there and the sun was still shinning and they were taking my baby tomorrow, guess I should try to call Aaron again.

It was a Friday and we set out early to have Maddison cut out. I know lots of women who have had C-sections.  But I had not and it just didn't feel right having her cut out.  I was sad.  Everything went well, I just remember the anesthesiologist kept rubbing my head, over and over.  It seemed like someone else's body.  I could feel the cutting and tugging but no pain with it.  Very strange.  They pulled her out, and she was crying and I wanted her, like nothing else I have ever wanted.  I couldn't sit up or turn I was all numb.  They finally brought her over.  I got one little look, just a small glimpse and a little touch.  Then she was whisked away.  All gone just like that.  Then Aaron was gone and I was all alone with the crazy doc rubbing my head putting everything back in and stitching me up. She was gone. Then Aaron came back and they wheeled me to recovery and I just sat there shaking and shaking.  She was still gone.  Aaron showed me a picture.  One little picture.  I craved to hold her so desperately.  Vickie and Mr. and Mrs. Duncan were in the waiting room.  After hours of waiting for a room I finally got one.  All by myself without my baby, still.  The Duncan's were in and out. 
My nurse was very pregnant.  She really couldn't help me.  They said I needed to urinate and pass gas before I could go see her, really that's what it came down to?  She would never come in my room.  I was desperate to see Maddison.  She was sent directly to the NICU. The only way I could see her was to get down there on the forth floor.  I was determined.  After hours of waiting for the nurse some other nurse from another floor came in for some reason, I can't remember why.  I told her I was desperate to see Maddison, she got my nurse right in.  They both helped clean me up and prepare me for going down there.  They sent up a wheelchair and put me in it.  We dragged the IV with us and we were on our way. I couldn't really walk or stand.  It had been about 8 or 9 hours since the C-section and the numbness hadn't truely worn off yet.  We did the hand washing, signing in, and long trek down the hall to get to her.  I was going crazy to see her.  We got to her little 5lb 15 ounce body and she was all tubes and wires.  She looked so delicate laying there.  I wanted to hold her but with her PIC line which goes through her umbilical cord and directly to her heart we were forbidden to hold her, they said maybe in a couple of days.  I wanted to stand sooo badly to get a good look at her one that I knew it would have to last me all night, as Aaron would have to go home and I would have to be in my room alone again.  I stood and touched her which was so great, then looked down and there was blood every where .  All over the floor I was bleeding.  How embarrassing.  The most sterile part of the hospital and I was bleeding everywhere, dumb nurse and all her no help guess the pad wasn't on very well.  I really couldn't feel it  to know if it was right. After a bit we rolled back upstairs and Aaron left to help my mom with the other kids, and I was alone again hmmmm, feeling like a pattern. I was very sad.  All the other women on that floor had their babies with them.  I did not.  I would have to wait until the next day to get to see her again.  Dr. Khoury did come visit and he was very proud of her weight, as was I since they told us maybe she would be 4lbs.  The next few days was a whirlwind.  The next month even crazier!!

Maddison Riley Duncan

I would like to start from the beginning.  This way if I write it all down, I know I won't forget anything! Although I feel as if I couldn't forget one moment of this roller coaster journey.

It was the end of June and my mother-in-law had invited me and the kids to go to the beach for a four day weekend.  It was a great time!  McKenzie ran around with her cousins and I chased after the boys from kiddie pool, to big kid pool, to the beach.  As soon as we got home we went on our yearly vacation to Sandbridge. I had thought while I was at Myrtle beach it was strange that I didn't have a period.  So while we were at Sandbridge we kidded about being pregnant.  I bought 5 pregnancy test.  ALL NEGATIVE.  I was a little disappointed but truly okay with it.  The whole week we talked about "THE BABY", in jest of course!!  It was really funny.  Because from the test results I knew I was not pregnant.  I told my husband it must be early menopause.  Even though I have four kids, it was very hard to conceive a couple of them, while losing twins in between.  Getting pregnant for me was not an easy task. I thought we didn't need to worry, I couldn't get pregnant.  As I had not in all years, Adam was 5. I came home and called my doctor.  She said to come in and we'd check things out.  She put me on a drug that causes you have your period. 

I had scheduled a doctors appointment 6 months before to get my knee checked out.  When I went into the office they asked me is there any chance you could be pregnant.  I said well I might be with an ectopic.  I had been before. Which would explain why I had no period and no positive test results.  He said well then NO X-rays.  I went into meet the doctor and was crying and explained why I was so upset. He said I promise I will get you in for X-rays as soon as possible you will not have to wait another 6 months as long as your not pregnant.  I left immediately and went to the emergency room.  They did an external and internal exam and said no baby.  They did blood work and there was no baby!  The next day I went back to Dr. Branche (knee doctor) and they did do X-rays.  They said I had arthritis in my knee and needed physical therapy.... blah blah blah.....  which seemed strange because I had that pain my knee all my life!! That seemed like a non answer.  I had waited my whole life to know what was wrong and it was just arthritis.  Still not sure I believed the diagnosis.

A couple of weeks passed and still no period after the drugs and still no baby.  I went back into the Ob doctor's office and she did another blood test.

The next day it was a friend of mines child's birthday and we went to Kings Dominion.  While we were there I got a message from the doctor, it said Hey Denise this is Doctor Cutting we need to talk, I have some news that might be quite shocking.  I called her back and she confirmed I was pregnant.  I felt crazy with panic.  I had done the X-rays.  My thought was something will be wrong.  God I hope not because it will totally be my fault. 

I called Aaron and was crying mostly for the reason I was in shock.  This was going to be his last year of preschool.  The prospect was so great with all of our children in school I could really get organized.  I was so excited about that.  All of it came crashing down, freedom seemed so far away.  I called my sister and I remember talking to her in one of the stores.  She was kinda happy and very supportive.  I don't remember much else about that day.  Just that I was very hot and I felt sick.

I went for my prenatal check-ups, just like with the other kids.  Different doctors than before and Dr. Cutting didn't do OB.  I was sad but whatever.  A few weeks in they wanted to start the testing since I was 38 and a much older mom.  I thought that was joke.  I was 38, not 44.  People told me to decline the "testing" but it was a sonogram, at 13 weeks, who doesn't want to see their baby and make sure that there really is one. I was excited but a little nervous.  It happened to be September 23, 2009 ,Aaron's 40th b-day.  I never imagined anything would be wrong and if they said there was I wouldn't have believed them, the eternal optimist.  We sat there waiting, I was looking around at the other mothers wondering what their story was and hoping mine wasn't like theirs, and I wouldn't be back.  We met with Doctor Poochie. Her nickname to me much later, had become Dr. Doomesday.  They did the sonogram and the blood work.  During the exam she let us know the nuchal fold was very large which was indeed common for down syndrome children.  She said to us well I have two things I could say.  One people that have kids with down syndrome stay married longer.  All I could think of was of course they do, they most likely have already been married so long having kids in their "old age" and everything. Then she said siblings of Down syndrome children are usually more empathic in life.  That was it, then she sent us on our way.  I think Aaron was in shock a little.  I felt so bad this was his 40th b-day.  As we walked out of the Alexandria hospital, he said to me "From the moment you told me you were pregnant, I knew something was wrong". My heart broke into a million pieces.  The man I depended on, loved, and felt he was truely the most wonderful husband and father, had deserted me.  I felt alone in my pregnancy and scared.  He had surcommed to the idea "that something was wrong".  And for once, he had no solution. I was crushed.....

Maybe a week had passed and Dr. Doomesday called with the news we had a one in four chance of having a child with Down syndrome.  We scheduled the amnio.  We had agreed that we should know so we could be armed with all the information we could find.  Plus we could also prepare our other kids and everyone around us.  I was very concerned about a large needle in my tummy!!  My mother had come in town to go with us.  That night we discussed it.  We already had decided we would obviously not do anything if the baby had Downs so Aaron said let's not do it, it has to many risks.  At that moment I knew everything would be okay.  My husband was there for me again.  Ready to help me get through this, and I knew I was not alone, anymore.  We went to the doctor anyway and they did another sonogram and they told it, "it's a girl".  Another girl.  I was elated.  A precious little girl.  My mom had never seen a sonogram so it was totally cool and exciting.  I loved her being there when we found out.

But little did I know this was a couple of weeks in and had many more months to go......  I truely wondered would I get there, and where was there?