Monday, December 1, 2008

Well, that was a quick 11 months...

and here we are in December. WOW! It is a crazy month in our house with both the HotY and Alex celebrating their birthday's. This also means it is annual check-up time for Alex. There are a myriad of doctor's appointments this month - eyes, ears, GI, endocrinology, and developmental specialists, blah blah blah. And I have the easy part - I just have to show up- Alex is the one who gets poked and prodded incessantly. He doesn't really like it but he puts up with it and does his part. Our development doc, who has followed Alex since the day he was born, always comments on what a nice young man Alex is - and he is absolutely right, he is a very nice young man. He has been quite the mama's guy lately checking up on me frequently. His favorite thing to do is to come up to me say "oh mom" and stroke my hair a couple of times. His special way of telling me he loves me. I think he thinks he has gotten too old for an "I love you" to his mom :-)

It is so hard to believe that almost sixteen years have passed since the day he was born. A day I will never forget - December 23rd. It was snowing, it was cold, we stopped at ShopKo to get film for the camera (yes, I said FILM), and we were late (I know - you are surprised). I was having a scheduled c-section. The HotY dropped me off at the check-in entrance, I got taken to the general ward area and waited and waited and waited for someone, anyone, to tell me what to do - no one showed up - well finally the HotY but he didn't know what I was supposed to do either. FINALLY a nurse poked her head in the door and was surprised to see me - no one had told them I was there and WAITING. After that things moved along.

At first I was a little worried about my parents driving in the snow so that distracted me for awhile but they finally showed up and I didn't have that to worry about so had to concentrate on what was going on - and I got scared - very scared. The shakes set in. They kept putting blankets on me but still I kept shaking. I'm not good at that anticipation thing. Once I got in the operating room I was just fine - but that waiting - it was bad for me.

Alex was born at 9:25 a.m. and was a beautiful baby boy. I quickly sent Dennis on his way to make phone calls. I remember thinking what a relief it was to know my baby was okay. But as I was lying there looking at him and thinking he was the most beautiful baby I had ever seen I looked at my nurse and said - "if he had Down Syndrome I'd be able to tell by looking at him - right?" she just looked at me and said "the neonatologist is going to come and talk to you when you get back t0 the recovery area". Right then and there I knew and I hated that nurse (even though she was very nice) and the neonatologist too. I found out later that day (from a friend who is also an OB nurse) that I really freaked the OR nurse out and she wondered if I had known Alex might have Down Syndrome. But I didn't - not technically anyway.

The funny thing is I knew next to nothing about Down Syndrome (well except what I knew from that show Life Goes On) but for some reason in the middle of my pregnancy I felt like something wasn't right. I have no idea why, I had never had a baby before so it wasn't like I had anything to use as a comparison. I would go to bed at night, look at the HotY and say "what if this baby has Down Syndrome" and he would just look at me, shake his head and say something about worrying too much. I told my OB about my "gut" feeling and he assured me all was fine but he still did an extra ultrasound just to ease my mind - and yet, it didn't ease my mind, it just kept nagging at me (it was that darn Super Special ESP) but there wasn't much I could do but wait and worry. Not that the worrying thing did much good but still it's what I do :-(

So my worst fear came true, but the world didn't end. To tell you the truth I didn't even cry. I had my baby. He was beautiful and perfect to me. There is nothing that could have taken that away. The neonatologist finally came and talked to me and I listened but I didn't really hear him I was too busy not liking him and thinking how foolish he was going to feel when he found out he had made a wrong diagnosis (a positive diagnosis of Down Syndrome could not be made until they grew the chromosomes) of course he wasn't wrong but at the time I thought he might be. So after a very full morning I was finally wheeled to a private room to get to know my baby. I remember how wonderful the nurses were, not letting anyone in to visit without getting our approval first, and taking such good care of us although one of them wasn't too happy when I called for Alex from the nursery at 3:00 a.m. but hey I wanted my baby. Things weren't perfect but I was happy and I could deal with this - I was doing okay. And then Christmas Eve arrived and there were Christmas carols in the corridor and it was very quiet and calm. They had come for Alex so they could perform some tests on his heart and shortly after my nurse came and told me that they were worried about his heart and would be taking my baby by ambulance to St. Mary's - a hospital equipped for critical care babies. They introduced me to the nurse who would be traveling with him and then they told me their plans for transporting the HotY and I to the other hospital and that is when it all came crashing down for me. I had hit my limit. I started crying and I couldn't stop and as they tried to get me to calm down and help me out of bed and into my bathrobe I decided I wasn't going to the other hospital. The HotY could do whatever he wanted to do, but me, I was not going. At that point in time I couldn't imagine any other outcome than the death of my baby and I was not going to go and watch that happen or listen to another doctor give me more bad news. I wasn't going to do it. Seriously. Finally they went and got the nurse who I knew and she talked to me and called my parents and finally between the group they convinced me to go to the other hospital, but believe me it wasn't an easy task and just to let them all know how unhappy I was about all of this I wasn't having any of their help. The nurses were a little freaked out as I was moving around and walking like I was on an energetic hike and not like someone who had just had surgery (at the other hospital no one could believe I had just had a c-section 24 hours before - but if you have ever seen me on a mission this should not be a surprise).

So, we arrived and Alex was in the NICU and we were "lucky" enough to meet several doctors who each gave differing opinions (two stand-outs being the one who insisted that surgery was 100% guaranteed and the other who showed up on Christmas morning wearing the roller blades he had received from Santa) and then we met the head of pediatric cardiology and I knew we had our man. He was fabulous. He explained everything and he didn't make any dire predictions. And guess what - that other doctor, Dr. 100% surgery guaranteed, he was WRONG! Alex did not require surgery. His aorta healed itself. Dr. Feldt, who followed Alex for the first five years of his life said it was one of the most amazing cases he had ever seen and if he had not done the scans himself he would have thought a wrong diagnosis had been made. Alex has had a strong healthy heart ever since (man I hate writing stuff like that - it makes me worry that I may be tempting fate or something). It has truly been an amazing and miraculous blessing.

So there you go - the longest 7 days of my life. I know you didn't ask but really I don't know that I've ever told anyone the entire story before and I felt it was time. KWIM? And you know what - shortly after Alex was born I remember driving somewhere in the car with Alex in the back seat in his car seat and I glanced back and saw him cooing and looking all cute baby and I thought "I can't believe I could have been so sad about all of this because there is nothing that makes me happier than this baby" and I have felt that way every day since.

I'll wait another six months before I even get into the birth story for the girls' because if you think that was drama-free you must not know me (my motto for life is "I try not to be high maintenance but it happens anyway") :-)



Shirley said...

What a sweet and amazing story!

Funny how the stories tend to get more dramatic with each birth. I have my own, too. LOL!

Amy said...

I don't think you have told me the story of Alex's birth. I hope you have scrapped it. :-) That would be alot of journaling! (Hugs) to you for sharing it though.

And yes, high maintenance just happens to you!! :-)

Wendy said...

That was beautiful my friend...

Maija said...

Your story is sad and beautiful! It brought tears to my eyes as I understand that intense love for your child!
May I don't look like an older mom- is there any specific reason that Alex has Down Syndrome? I don't know much about it.
I happy for your beautiful outcome- Alex is a doll!