Monday, June 18, 2012

This time around (Part 1)

I have struggled with writing this post for weeks. I will go ahead and warn any readers that this is long and could get a little emotional...or "hormotional" since there are so many hormones involved. Reasons I struggled with the post are numerous, but I think a lot of it boils down to the fact that I struggled with how I was taking in and processing everything that has happened. And as difficult as this may be to write, I don't want to forget how I am feeling through it all, so here we go... Our pregnancy with Raptor began very much like the first two. We were trying, found out together by pregnancy test, kept it a secret for a few weeks, then slowly began telling family and friends through the end of the first trimester. My mom guessed over the phone, and both Matt's parents and my Dad and Debra were told with matching Big Sister shirts for the girls. We marveled at how blessed we already were and very much looked forward to more blessings coming our way. As mentioned in a prior post, I have been very nauseous this time around and attributed that to both being pregnant for the third time in three years and being busy taking care of school kids and my own precious ones at home. Fast forward to my 12 week appointment- This appointment includes an ultrasound and an optional blood test to look for indicators of chromosomal abnormalities in the Baby. Matt and I have always taken advantage of it and really look forward to seeing the Baby on the ultrasound. Because Matt's work has been so hectic he was unable to join me, but my mom came for a peek at the Baby. Looking back, one of many blessings that she was there with me and I was not alone. I very much looked forward to this appointment that week because I had a rough day at school the day prior. Nearing the end of the school year is always difficult and the day before was one of my worst days teaching ever, exponentially made worse by pregnancy hormones. My mom and I get to my appointment and wait for the Ultrasound tech to call us back. When she did, we walked into the room where I was prepped for the procedure and held my breath like I always do until I see that tiny, miraculous little flutter of a heartbeat. Once I see that I am always able to enjoy things a little more. The heartbeat was quickly found and was busily pumping blood to Raptor's body just as the heart should do. The tech worked hard to take all the measurements needed because Baby Raptor was not cooperating...imagine that...we have a stubborn baby on our hands. I briefly noticed at one point that she typed in "nasal bone not seen" and made a mental note to ask Dr. Norton about that. We were given pictures of the little one and sent out to the waiting room to be called back to see the Doctor. A quick blood pressure measure, weight taken, pee in a cup, and blood draw later (where the nurse laughingly asked "Why?!?" when I told her we went natural last delivery), Dr. Norton came in to ask how everything was going. When I asked her about the comment on the ultrasound machine she explained that because of Raptor's positioning they were unable to see the nasal bone, she was sure it was there, but because of the nature of the testing they were doing, they have to indicate that on the paperwork. We proceeded with the appointment and towards the end, she just stopped. I remember she looked at me and seemed to process a bit in her mind. She commented that she didn't want the blood work to come back inaccurate and would check to see if the Ultrasound tech could look again to see if Raptor had moved a bit. We excitedly went back again where the Tech, begrudgingly I might add, looked and easily found the nasal bone again. This time though, she took a few extra measurements at the base of the neck and sent us back to Dr. Norton. When Dr. Norton came back from looking at the second scan, I could tell something was different. She sat down and told us, yes the nasal bone was present, but they were now concerned about the size of the nuchal translucency. Our measurement was not just large, but significant. In fact, they look for less than 2 mm and our baby had a measurement of 5+ mm. I reeled as I took this all in...not knowing what it meant, Dr. Norton continued. She said that this would definitely impact our risk factor for chromosomal abnormalities and we would probably be seeing a specialist when the test results came back. She explained that this could be nothing and it would go away, or it could be a cyst that would need to be addressed, or it could be an indicator for trisomies. At this I stopped her and hesitatingly asked her, "We are talking about Trisomy 21 correct, we aren't worried about 13 or 18?" She indicated that no, all of the trisomies were a concern. With that I lost it and began to cry. Trisomy 21 is Down Syndrome and as all readers know can have a lot of positives and negatives as far as special needs go. Trisomy 13 and 18 however are much less known about because they are, for the most part, incompatible with life. Very, very few babies that have the extra chromosome on 13 or 18 survive to be born, much less for more than hours after birth. As I cried, Dr. Norton explained a few things about when we might expect results, that she would personally call us, and asked if I needed anything. She gave me a hug and told us she was sorry for the unexpected news. If my friends and family weren't sure of how much I love Dr. Norton...please know...she is amazing. I talked with my mom in the parking lot and told her how much I didn't want this to be the case. I called Matt on the way to pick up the girls and told him how much I didn't want this to be the case. I told our friend Crystal as I picked up the girls how much I didn't want this to be the case. So much was going through my head...we could lose our baby...our little Raptor...the baby we hoped for, prayed for, tried for, and rejoiced over. We could have a baby with special needs which meant a whole new game plan for our family. The baby could have heart problems, would probably need physical and occupational therapy, and at some point would probably need speech therapy, and would need all sorts of assistance that I wasn't sure I was ready to give. There could be absolutely nothing wrong with baby and I could be stressing myself out over nothing. I was reeling and eventually, with the exception of crying spells for the rest of the day, I began to feel a little numb and detached. That day, I know I detached myself from Raptor. I wanted to protect myself just a little bit. I wanted the assurance that everything was going to be ok, but because I couldn't have that I needed some sort of shield around me. I felt like I was in a fog because I didn't know how to feel. Was it ok to be mad? Was it ok to be sad? Was it ok for me to pray and beg for a "normal" baby? Nobody wants their baby to be born with special needs, but it is because, deep down inside we want our babies to be able to accomplish everything and to never struggle. This seemed like a pretty good assurance that there would be struggles everywhere. About a week later I got a phone call from Dr. Norton. She told me that my blood test results were in and we had my risk factor for chromosomal abnormalities. To explain the risk factor a bit better, it is like looking at a weather forecast. Under the conditions given in a weather forecast (barometric pressure, currants, temperature) x% of the time rain or shine has occurred. Under the conditions in a pregnancy (hcg hormone level, papp-a blood test, and nuchal translucency) 1 in ___ number of babies have been born with chromosomal abnormalities. Normal risk factor for my age is close to 1 in 1000. After getting my blood test results back Dr. Norton told me that my risk factor was 1 in 5 for Down syndrome. If I hadn't been sitting already, I probably would have fallen to the ground. I knew our results were going to come back high risk, I knew we would have extra testing, I knew we would be considered to have needs this pregnancy, but I believed that our results would come back 1 in 100, 1 in 60 at the most. A 1 in 5 risk factor seemed like a sentence to me...it is not a diagnosis, but how does someone my age go from a 1 in 1000 risk factor to 1 in 5?!? Again, Dr. Norton has been fabulous and has said all the right things at the right time. She explained that Texas Children's would be calling me to set up a few appointments, we briefly discussed the possibility of an amniocentesis, and she let me know that as far as we could indicate I wasn't at an increased risk for Trisomy 13 or 18 (which was relief). I was unable to reach Matt and because I was at work I crossed the hall (during our off period...again a blessing that I was able to field that call during my off period) to talk with Petey, my beloved friend from work. She let me cry, she let me be mad, she let me feel what I needed to and wanted to feel. She didn't tell me things were going to be ok, but she did tell me that things were going to work out. Funny how a few words change the entire meaning of a discussion. It has been funny reaching out to others and telling people what has happened with us so far. Responses have been varied. It has been frustrating to us when people tell us that we are a part of God's special plan. This is frustrating in multiple ways...what it boiled down to for us is that we were fully aware that we have been and will be a part of God's plan. We recognize and submit to God's sovereignty in our lives. But just because we submit to His plan does not mean that we aren't able to feel distress in moments like this. We believe that we are absolutely entitled to feeling angry and devastated at this potential news. We really felt like people who only respond to news like this by talking about God's plan were taking away from the emotional hardships that we needed to face together and to get through. We felt like their reminders were simply that, a reminder that we are little and we are being petty by expressing dismay at God's work. And it felt like because others were quick to dismiss our sadness or frustrations that they weren't allowing us to tackle this issue, to climb this mountain, and to get to a place where we needed to be. We fully realize that people are at a huge loss for what to say in moments of crisis and so we aren't mad at anyone. That being said, good responses were found too. Family and friends told us they were there for us, that they would be praying for us, that they loved us and Baby Raptor, a handful of beloved people came out and told us "Wow, this sucks that you are going through this" which I loved because there were many moments that I felt like this sucked! I just wanted to enjoy my pregnancy to relax and anticipate those first kicks and to dream about who this baby was and who they would become. I felt like I couldn't do that because I could only worry about getting to my next appointment. And to top things off I felt like with a risk factor of 1 in 5 I might as well prepare myself for having a baby with Down syndrome. So of course I began to research. Google is a wonderful and a terrible thing. While there is some pretty scary information out there, for me it was calming to learn more about what could be going on with Raptor. It made me feel normal when I read about other people who had the same reactions we were having. It made me feel normal to read the birth stories of women who found out at birth about their child having Down syndrome and how quick the denial and questioning sunk in until they had to face their new reality. It made me feel less crazy that I was still feeling morning sickness because I read that with the high hcg hormone level I measured it was like having the hormones of a twin or triplet pregnancy (and trust me, with as many ultrasounds as we have gotten, there is only one baby in there). I began to read things that made me laugh and smile, reading about parents who have worked hard to love their babies for their individual selves and not for their diagnosis. I have read about progress made in caring for and long lasting health for people who have Down syndrome. I have read about children and adults all over the spectrum who have accomplished a great many things. I have also read many, many things that make me cry and make me scream and make me sadder than any Down syndrome diagnosis could. There have been no stories about kids who have Down syndrome that have made me as sad as the termination rates for this diagnosis. The scary facts about pre delivery diagnosis deserve a post all it's own. All I will say here is that for Matt and I, termination has never, ever been a consideration in our mind. We have never entertained the option of changing our pregnancy status even with a terminal illness consideration. We wanted to know so we could prepare. We wanted to prepare out hearts and our minds and to be ready to love whoever was growing in my tummy for exactly who he or she was. Our next steps were simple enough, I met with a genetic counselor who went over many of my questions and worries. The best possible option for us was to do an amniocentesis. The genetic counselor really felt that it would give us the most information about the Baby so we would have less lingering questions at the end of testing. The counselor comforted me the most when she said, "Something is going on with this baby, it's our job to figure out and monitor what it is." I realized that, for some reason, Raptor wanted us keeping tabs on him or her and what Baby Raptor wanted, Baby Raptor was getting... Our next step is a long process and I want to process what has been written so far...so more to come...

3 comments:

kim winkler said...

I know that you, Matt and the girls will be a wonderful, supporting, loving family to our new darling grandchild. Life is not fair, cooperative, easy and can really suck sometimes. However as you all know the beauty, love, kindness and joy that it brings makes it all worth while. This baby is very lucky to have you both as parents and two wonderful sisters to help the baby thru the twists and turns of life. We are here to support you and to be there for all of you. Our love is unconditional and will love our new grandchild no matter what. Love all of you.

The Marin Family said...

You did a great job organizing your thoughts! This really takes us through your journey so far... Love you guys & especially sweet baby raptor!

Jessica Brown said...

Aunti Jessica and Uncle Bob love baby raptor! I think all of your feelings are valid and you are being completely rational. I love you all and can't wait to see where life takes your family with your new addition!