Well I thought I'd start this blog to keep our family and friends informed on what is going on in our lives. We recently received some rather shocking information about our baby that is due in May and I thought I'd share my story as we go along on this unexpected journey.
I will start from our first daughter's birth- sweet Ainsley- She was born at 34 weeks due to a rare condition called Congenital Chylo-Thorax which caused Fetal Hydrops. The whole thing was dramatic- at 33 weeks I thought I was having some labor symptoms but the doctor measured me and I was measuring 40 weeks instead of 33 and my blood pressure was sky high. I was rushed down stairs to a specialist at Rex Hospital in Raleigh, NC only to be told to call my husband immediately because the baby and I were in great danger. It still brings me to tears just thinking how scared I was. Everything had gone perfectly up to this point- what could be wrong? Mike arrived and we rushed over to another specialist at UNC Women's Hospital in Chapel Hill and for 3 days they ran tests, did ultrasounds, had meetings over what to do with our baby. I will never forget when the Chaplin came to our room- all I could think was this was the end, he only comes when the end is near. He prayed for us, for our unborn daughter and for us to have peace. On December 20th, 2004 the doctors decided that they could help our little girl on the outside as she was not doing good inside of me. We were rushed down to the O.R. and Ainsley Elizabeth was born. They told me she probably would not be crying and that they would not be able to bring her over to me. They had a whole team working to resuscitate her. Ainsley was put on a ventilator and the first week of her life was touch and go. She was such a fighter and the doctors even called her a "miracle baby". To make a long story short she was in the NICU for 5 weeks and the problems didn't end once she got home-feeding issues, slow growth but for the most part she was healthy and is now a perfectly, healthy 4 year old. I guess I'm telling you this story because I thought that would be our biggest baby drama that God would allow, I mean how much more can parents handle is what I was thinking. No doubt God was there every step of the way and although we don't know why it happened, it doesn't matter, it all made us stronger. Here's a picture right after she was born. She was full of fluid because of the hole in her lymphatic system which made it impossible for her to regulate all of the amniotic fluid that circulates through out the womb. Eventually she got rid of the fluid just by peeing and lasix- no surgery or draining was required!
Fast forward to my second pregnancy. Mike and I were given a 1% chance that the same thing could happen again but the geneticist really felt like this was something that just happened and had nothing to do with us. Listening to all my friends and their wonderful birth stories and how naturally, their babies came home within 2 days, ate like champs, grew super fast, I was determined to have a normal pregnancy, a normal delivery and a normal experience with a newborn if I had anything to do with it. On May 2, 2007 our Harper Elise was born at 39 weeks via an elective c-section. I wanted everything planned and man was it perfect. No problems during the pregnancy, ultrasounds looked great, delivery went perfect and Harper ate like a champ! I remember leaving the hospital in the wheel chair with my little girl, so proud because I didn't get to do that with Ainsley- I had to leave Ainsley at the hospital- so this was the moment I was waiting for. Of course I sat there for quite a while because Mike did not have the car seat in correctly and the car seat guy had to show him how to "properly" install a car seat! You'd think we were first time parents:) Here's Harper on her birthday!
Well, after Harper I went back and forth about wanting another one. For a while I said two is enough, they are both healthy and I really don't enjoy pregnancy and Mike was happy with two. But then I changed, when Harper started crawling and then walking I thought is this really the last time we're going to experience these huge milestones? I just couldn't imagine this was it. So after several months of convincing Mike to have another, he gave in and we got pregnant very quickly. However, I remember mentioning to a friend of mine when I first found out that my worst fear would be that if this baby had something wrong with him/her and I was the one that wanted this, not Mike.
We moved for Mike's new job in November when I was 11 weeks (as many of you know, we always move when I'm pregnant) and everything was going great. In fact I thought this has been the easiest pregnancy, I mean I didn't even feel pregnant, it was great. We started to make friends and got adjusted pretty quickly.
Now, I'm going to share some little tid bits of info. that I feel almost foreshadow what was to come. Before Thanksgiving I went to Barnes and Noble for reading time with the girls and my friend Renee and her daughter. There, I saw 2 little toddlers that had Down syndrome and I was amazed by them, they were participating and paying attention way more than the other kids and I even mentioned it to Renee. I'm not sure why they got my attention but I just thought wow- those children are amazing!
Fast forward to December 21, 2008, it's Sunday night and the next morning I had a regular 4 week appointment with my OB. I started thinking- I wonder why I haven't heard about my prenatal screening tests-it's been a week- I wonder if this practice calls or mails something or if they will just tell me everything looks normal tomorrow. Hmm, I thought, so I got on the internet (very bad place to go when you're worried about something by the way) but I went on the babycenter website, a place that I've gone to for years to find baby names or information about taking care of babies and such and I went straight to the board labeled Down syndrome Pregnancy. So I started lurking for a bit and then I thought- Adrienne-stop, you are fine!
The next morning Mike was off from work so he dropped me off and took the girls to run some errands, there was no need for us all to go- it was just a routine appointment. As soon as I got in an exam room I asked the nurse if they got my screening results back- she looked in my chart and said yes but they just needed to interpret them. I thought okay- so that's why they didn't call, they just got them in, no biggie. So I waited and waited, she came in and apologized and said it was just taking a while to interpret them but that it should be any time. Hmm, I thought, that's not good and I seriously started envisioning a little girl (I was convinced we were having a girl for some reason) all dressed up like Ainsley and Harper in some cute outfit but there was one thing wrong- she had Down syndrome. I couldn't get it out of my head. How could this be? Finally the doctor walked in and instead of saying everything looks great she made small talk, asked about my previous pregnancies and such, all the while I'm thinking get to it lady- tell me, what do my results say? She finally said "Now, I'd like to talk about your results" right then I knew it- my baby had Down syndrome. I could not believe it, I had this feeling all along, my worst fear has come true and now I have to tell Mike. Well, the results were not final, she explained it was just a screening but that they wanted me to go talk to a genetic counselor and have a level II ultrasound at the hospital. (Warning, these feelings I share next were real and honest and I realize they seem harsh, but until you are in this situation you don't know how you will feel) I then asked her what were my odds-(I was reading the night before about women who got results back that said 1 in 160 or 1 in 220) she said she really didn't like telling her patients because it is just a screening and it may be nothing but mine were 1 in 10 that this baby had Down syndrome. When I heard that, it was all over, 1 in 10?! And these women were worried about 1 in 160? Are you kidding me? I honestly did not want this baby and this is me just being honest- at that point I thought maybe I'll have a miscarriage and we won't have to deal with this. I left the office calm but as soon as I saw Mike I broke down. I felt that it was all my fault, I wanted to get pregnant, not him and now this baby is not perfect, or normal, this baby has Down syndrome.
The next day we went to do the level II ultrasound where they found a heart defect and shorter limbs for gestational age (both are markers for DS). Right then and there I said I wanted to know for sure- I wanted the amnio- no matter what the risk. The procedure went fine and on December 26th, 2008 I got the call- it was confirmed our baby had Down syndrome and that it was a boy. This was the day that my life changed forever. It would never be the same. Our perfect little life that we had was gone. Why was God letting this happen to us again? Ainsley's birth was traumatic enough but now this? Why God, why? I can't do this, I thought, I don't want to do this, quite honestly. Mike didn't either. Who does? So we cried that day, we were angry at God, I was angry at myself and then I was just numb. I still could not believe in a million years this would be happening to me but yet I somehow knew.
So a couple days went by and the genetic counselor called to check on me and then she said I had options- I could keep the baby, I could terminate or I could put the baby up for adoption. Well, no matter what my crazy emotions were when I was thinking maybe the baby won't make it and it would be for the better, I knew that I would not terminate. No way. This is the baby we created and we were going to keep it. I felt terrible for wanting something to happen and that I could not even feel excited that we were going to have a little boy. I hadn't talked to God in a couple of days because quite frankly I felt betrayed. How silly of me, I think now. I now know that God didn't make our baby have Down syndrome, he wasn't punishing us with all of this. Things like this just happen, they happen to good people and not so good people, to Christians, to non-Christians, things like this just happen. But just as with Ainsley, God has a plan and I just know if I let Him take over and stop trying so hard to be a control freak it's going to be okay. It was with Ainsley- as soon as I gave in because I couldn't do it anymore- I couldn't watch my little baby girl hooked up to all those machines not knowing if she would live- God stepped in. I just gave it all to Him. I remember that happened on New Year's Eve, 2004 and the next day Ainsley amazingly came off of the ventilator. So I think in a way Ainsley's birth has prepared me and hopefully Mike for what is to come. We are not in control- as much as I want to be, I'm not. I truly believe though if we just let go of that control God will show us the way.
So this is our story thus far. I know it's long but I felt I needed to start with Ainsley as she was really the beginning of our unexpected journey- parenthood, I guess, in a nutshell. And though I feel like our lives have changed forever with this diagnosis I just know in my heart it will be for the better, no matter what happens. I'll hope you'll check in from time to time to see how things are going! I promise, other posts won't be this long:)