The Roller Coaster Ride

To say that last week was a roller coaster would be an understatement. I cannot even adequately describe all the emotions, feelings, and worry we went through. I think the best way to describe it is just to recap from the beginning.


Monday

I get a call from my doctor. At first, I thought maybe she was calling to tell me I had an infection or something stupid like that. I had been to the doctor for a check-up the previous week and since I had a cold, she took a throat culture. I stupidly assumed something had come back positive from that. Unfortunately, the news she had was much worse, which I should have figured out from the fact that she was calling me herself instead of a receptionist or her nurse practitioner. My quad screening blood test I had done the previous week had come back positive for down syndrome. At first I don't know if I really comprehended what she said, but it quickly sank in and I could barely hold back the tears on the phone. An ultrasound would have to be set up at a later date to determine more she told me. After hanging up, I just sobbed. I collected myself briefly to call Richard at work, but of course he didn't answer. After the third try I left a message. I had to tell someone so I called my sister, who said she immediately knew something was wrong when she saw my phone number pop up. I don't think either of us really knew what to say or think, but it definitely helped me just to talk to her and get my feelings out. Richard finally called back and he was in shock just as I was. After talking to him I made another call to my dad, similar to the one I had with my sister. By the time I spoke with my mom, I had calmed down a lot and was able to be more level headed about everything. That afternoon I hopped on the internet to do some research about these tests and found out that there were a lot of false positive cases. I began to feel hopeful, but tried to expect the worst none the less.


Tuesday

After not hearing from anyone the previous day to set up an appointment for the ultrasound and not really knowing if I had understood her correctly (after hearing the words "test came back positive for down syndrome" I couldn't focus on much else), I decided to call the office myself. Luckily someone returned my phone call quickly to let me know that an appointment would be set up later that day. I was able to tell them that it had to happen either this week or the next because we would be going out of town for the holidays on the 13th. I feel very grateful for this because there would be a very good chance we would still be waiting on the ultrasound for another week! As it was, I got a call back later that day to set up an appointment for the very next day at 4pm. Despite my best intentions to the contrary, I had began to feel hopeful that this was all just a mistake, another false positive to go with the list I had collected from all my friends. It seemed that everyone knew someone or WAS the someone who had a false positive test. I had lots of stories of my friends and their moms/friends/sisters-in-law/whomever else this had happened to and their babies turned out to be fine. I wanted to keep a level head and not go in thinking everything would be okay because I knew if I did that I would be shattered all over again if the results were not good.


Wednesday

It was hard to wait around all day for the doctor's appointment at the end of the day, but I had no choice. I just tried to busy myself doing chores and running to the store. Finally it was time to leave and Richard would meet us at the office from work. The girls and I arrived there first and there was a big sign on the door that said "no children allowed". I was more than peeved because my doctor had never mentioned this to me (they do allow children in the office, but this high risk specialist doctor did not). And to go off on this a little bit, it always annoys me when offices don't allow children. They make up some lame excuse about diseases! My children are 100% vaccinated and I would feel much more comfortable being around them than some random woman's husband in the waiting room who may have just gotten back from a trip to who knows where! Meanwhile my children have lived in the US their whole short lives and they are the ones with these awful diseases? If you don't want children in the office, at least be honest and say it's because it's annoying when parents can't control them and they run wild. Don't pretend it's about diseases. The pregnant woman sitting next to me could have had a disease as well.

So back to the real matter at hand, although that really did affect us negatively I think. Richard had to wait out in the car with the kids while I went through this ultrasound all by myself. No one should have to go through something like that alone, it was a terrifying experience. They called me back, put me in the room and the ultrasound tech came in just a minute later. She took all the measurements and chatted a bit with me and I asked her if she would be able to tell the sex. A few minutes later she said she was trying to look and something flashed on the screen. Was that what I thought it was? Yes, she was pretty sure it was a boy. Then he showed us again and she was able to get a screen shot and print it. And there it was. We were having a little boy. I felt excited for a few minutes and then tried to just focus on hoping the baby would be healthy. That was what I wanted more than anything; penis or no penis, it mattered not to me. After this technician took her measurements she switched with another one who took more measurements. The doctor also came in to introduce himself during her scanning and he was very nice. I prefer female OB/GYNs, but he put me at ease and I liked him. After the second technician was done with her scans, the doctor took a look and did his own measurements. This was the longest ultrasound I have ever had! It was nice to be able to see my baby for such an extended period of time, but honestly I was getting anxious to know what was going on. When the doctor was finally done, I was able to sit up and find out what was going on. The news he had for me was not good. The baby's nuchal fold, which is a collection of fluid all babies have behind their necks, was measuring at 6mm. Now, this is actually not a huge measurement from what I have researched, it is borderline. It is 6mm and greater that the doctors begin to worry, so of course this was cause for concern. The doctor also could not locate a nasal bone, something that is very common with down syndrome babies. In addition to that, the baby had white spots on his heart (another symptom), was measuring two weeks behind (stunted growth is another sign) and should I even mention the positive quad screening blood test result that brought me to the office in the first place? All these markers were not good. The doctor told me in no uncertain terms that he was very, very concerned. He did the math for me and the nuchal fold measurement alone gave me a 1/3 chance of having a down syndrome baby. Add to that all the other markers they found and you would think it was a slam dunk right? This is what I knew for certain. The doctor could not make a diagnosis based on an ultrasound, but he didn't have to confirm anything for me; through his actions and words and the results, I knew.

I was devestated, to say the least. The doctor offered to do an amniocentesis right there so we could know for sure. Termination was never an option, it was just more that I wanted to be 100% sure and have no doubts. I knew I could spend the next five months convincing myself that everything would be fine and then be totally shattered again when our down syndrome baby arrived. So really, it was for my own peace of mind and so we could prepare ourselves for this child. I went outside to find Richard to come to an agreement about the amnio. Of course I was scared about the risk of miscarriage (anywhere from 1/400 to 1/1,600) and knowing that I had already defied the odds of having a downs baby (1/1,300 for my age) these statistics meant nothing to me. After a lot of discussion, we finally decided to go ahead with it. I went back in alone and was brought the consent forms to sign and broke down again. The doctor came back in to answer my questions. I became concerned for myself, for the risks to my health. Infection and blood clots were on the list of things that could go wrong for me. I was of course concerned for my baby, but I had two daughters sitting in the car waiting for the their mommy and after the week we had been having how could I be sure everything would be okay? I finally declined the amnio, saying I just couldn't do it. After all, the markers were pretty telling, I already knew it would come back positive, this was really just a technicality, confirmation. However, I changed my mind yet again and decided to go ahead with the amnio.

This was an interesting experience itself. Some women say it hurts a lot and that was just not true. I never even looked at the needle and to this day I have no clue how big it is or what it looks like (that same thing is true of the epidurals I received during childbirth twice). They stuck it in and it feels like a very small bee sting piercing the skin and then when it enters the uterus it feels like the mildest menstrual cramp (I was told it would feel like the worst). I watched as he withdrew the amniotic fluid into the tubes and found it fascinating that this was the liquid inside my uterus, floating around with my baby. I don't know why, but for some reason that sounds so sureal to me. After about 2-3 minutes it was all over. I was a little sore for the next day, but other than that I thank God that everything was fine.

I left the office feeling pretty numb. I tried to keep it together for the kids, mostly for Calli because I didn't want her to worry. When we got home I told her that the baby was a little boy. I will never forget her reaction. She held onto my belly and looking up at me said "nooooo. It's my other little sister". I had to tell her a few times that I was sorry, it was actually a baby brother. It took her a day or two, but she finally came around to the idea. She was just so stoked to have another girl in the house, another little sister. She is not as excited about a little brother, but I am sure when he gets here she will love him like she loves her little sister.

When the kids went to bed we set out calling our parents and telling them the devestating news. I basically said that our baby has down syndrome and we were just awaiting the amnio results, but they were pretty much just a formality. It was hard to deny the truth in the ultrasound.

Thursday

The next day was hard for me. I had to take it easy because of the amnio the day before and I was still reeling from the news. By the end of the day I felt like I was in a better place. I knew we would love our baby (OUR SON) no matter what. It was just a hard thing to come to terms with. There were so many questions going through my head. And I have found that although the internet can be great for research, there really is too much information on it. My mind boggled taking everything in and a lot of the time it really didn't help. What I did love reading were stories from moms whose children actually had down syndrome. I began to see that these children were not so different than a healthy child. They develop a bit slower and look a bit different, but are capable of so many things! And we are so lucky to live in a time where there is so much available to these children in terms of programs, schooling and support. I knew it would be a long road, but eventually I felt that if these other moms could be okay with everything, then why couldn't I? Eventually I would get there.

Friday

The doctor had told me the full results of the amnio would take about two weeks, however there are the FISH results, which are basically just the results from measuring the five chromosomes 13, 18, 21, X and Y. Those results would take just three business days, but since I had the test done so late on Wednesday he speculated they wouldn't be back until Monday. So I had never even thought I could hear anything on Friday. However, around 4:30PM my cell phone rang (why they called that number, I have no idea!) and a number I didn't recognize with a 210 area code popped up. The wrong numbers that I get are always in the 916 (Sacramento) area code since that is what my phone is in. So I just decided to answer this one and it turned out to be the receptionist from the doctor's office. My heart sank a little when she identified herself and then it started to beat faster. The next few minutes of conversation are a blur to me, but I remember the basic gist. She said they had my initial FISH results back from my amnio. At this point I expected her to tell me they needed to set up an appointment to come in to see the doctor (because they won't tell you bad news over the phone). Instead, the words I heard were "your results came back negative". At this point I just started shaking. How could that even be possible? Then she asked me if I wanted to know the sex of the baby and I said yes. She said "it is a boy". Then I questioned how the results could be negative, there were so many markers at the ultrasound. Could he still have downs? The receptionist didn't know anything other than amnio results are 99.9% accurate and it would be very unusual to still have a down syndrome baby after it and I couldn't put together a coherent thought or sentence so I just thanked her and hung up.

I was in shock. I still am, although it has subsided a bit. I tell everyone, if you had been in the ultrasound room with me, you would understand why I had every belief that this baby would have down syndrome. But instead I was in there alone so no one can commiserate with me. Instead it just seems like I blew the whole thing out of proportion and made a whole lot of drama. When in fact, this is not the case. I am still not one hundred percent convinced that my baby is fine. And I don't even know if this is the case. Maybe the markers indicate something else. I pray this is not the case and all just a big misunderstanding, a nightmare I will wake up from in May. I don't think at this point anything will reassure me any differently until the day he makes his entrance into this world. I have to go back for an ultrasound in January when we get home from California because the doctor was concerned there may be a hole in his heart. So I still have a lot of prayers to be answered and am far from this roller coaster coming to an end.

So what about the name Parker?