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!!

1 comment:

  1. "Well why can't Down Syndrome be your miracle?"

    I love this comment - Down syndrome is my miracle!

    I just read about your blog on your BBC post. Thanks for sharing!