Monday, June 18, 2012

This time around (part 2)

So again...this will be long...but it is good to get it down... Before we got this kind of a risk factor I said I would never in a million years get an amniocentesis this early on in pregnancy. I told myself and my friends that the risk wasn't worth it, that it didn't matter to us, that we would be fine in any situation without it. I shook my head at people on message boards that talked about going through the procedure for peace of mind. I even asked Dr. Norton if we should go ahead and have the 12 week testing done because I was quite certain I would never have an amnio. All of this changes when you get a risk factor of 1 in 5. It was like eating of the forbidden fruit and once we had that knowledge of that possibility there was no turning back, we had to continue, we had to know. I continued to research until the end of the school year which pretty much coincided with my first Maternal Fetal Specialist appointment and a possible amnio. For as fast as the school year had flown by, for as fast as the school year usually passes by, once faced with this news the days dragged on in an endless barrage of "Come on...can we please get to the end". Instead of excitedly packing up my classroom and doing end of the year procedures, I fretted and worried and talked Petey's and Matt's and a my Mom's ears off about all the different possibilities there. I looked up more and more and went back to researching a bit about Trisomy 13 and 18 because the genetic counselor let me know that honestly we cannot rule anything out yet although it does seem less likely. I thought about things I never thought I would worry about. With Trisomy 13 and 18 Matt and I would have to decide whether or not to sign a DNR (do not resuscitate) and if we should go ahead and find out the gender in order to have a little bit of time to bond with a baby, a name, and have an outfit ready for the hospital. We began to think about how this might impact our little family if a baby even had "just" Down syndrome. We always thought we would have four kids, but with a possibility of one having special needs would we go for a fourth. We thought about how this might affect the girls and decided, laughing, that they would both love the baby and be all the better for it, but MacKenzie would work hard on articulating why our baby was special and unique when faced with adversity and Keegan would probably just get mad and punch someone in the face. We thought about being placed into a label and how we would handle that, how our friends, family, the community might treat us if we became the family that had the kid with Down syndrome. We mulled over our names and pondered if those were the best possible names for a kid with special needs. We thought about ourselves...were we prepared to take this on, could we raise a child with special needs, would we be good enough. I struggled. A lot. Plain and simple, I did not want this diagnosis and I resigned myself to going ahead and accepting this as our fate. I couldn't hope for normal chromosomes and get let down when we had an extra one somewhere. I closed off my heart to a "mail order perfect" baby and felt, deep down like this was going to be our new reality. Our appointment with the first specialist could have potentially given us some answers. I remember saying, "I don't know what would be worse, finding many indications of what was wrong and getting our diagnosis or not finding anything out and having to still wait for information". We were becoming used to the "Sorry we don't know and we are going to have to wait and see" answer. Our Genetic Counselor even apologetically informed us that they couldn't get our insurance company to pre approve the procedure even though it is termed as medically necessary, we would have to take a leap of faith that they were going to help cover the costs at the end of the day. What an extra frustration on an already tense time for us! When we met with the Maternal Fetal Specialist we first had a Level 2 ultrasound to measure everything on the baby. I think instead of holding my breath only until we saw the heart beat, I held my breath until the whole procedure was over. My palms were sweaty, I was nervous, and had wave after wave of pregnancy and nerve induced nausea. Every time they took a measurement I either thought to myself, "Wow that looked pretty good, maybe we have a chance" or "Man, they are going to lay out the bad news on us any minute". I only knew what half of those measurements indicated or said, but I was 505 sure we were ok and 50% sure we were looking at a probably diagnosis. Our ultrasound tech friends told us to look for a smaller neck measurement, hands being open, and the long bones in the arms and legs being proportionate to our due date. They said all other markers that they look for that contribute to a "forecast" of Down syndrome or other abnormalities would be hard for us to tell on the screen. The doctor finally let us know that for the most part the baby looked excellent. The neck measurement, which he termed "impressive", was still large, but hadn't grown over the past three weeks which was a better sign. The organs looked good and Raptor had a good heart and measuring decently limbs. He asked if we wanted to know the gender to which we both exclaimed our No! There was one teeny tiny little marker that could indicate a correlation with Down syndrome and that was an Echogenic foci. We are very familiar with these as Keegan had the bright spot on her heart as well. I immediately wrote this off as being non information because many, many babies of all types have this. The doctor then told us that he couldn't really tell much. He would be surprised if Raptor had Trisomy 13 or 18, but couldn't really give us anything else to go on. It was more hurry up and wait because I couldn't even have the amnio done that day as we were not far enough along in the pregnancy. So we went home, waited some more, researched some more, worried some more, and as much as we could focused on other things. We spent time with the girls, with family, with friends, and with each other. At my 16 week appointment the following week Dr. Norton again gave me a hug and reassured me that as long as Raptor didn't have a heart condition that our hospital was more than equipped to deliver a Down syndrome baby and if they did have to transfer me to another practice better equipped to handle a heart problem it would not be until much later in the pregnancy. She assured me that if by some small chance Trisomy 13 or 18 came up that she would help us do anything we could to deliver our baby and have some time with him or her. She let me know that unlike the Genetic counselor and Specialist who have to, by law, discuss termination with me that she did not do terminations in her practice so I was safe from having to have that discussion again. We discussed that if the baby does not have Down syndrome that we will need extra monitoring later in the pregnancy and I would be looking at twice a week appointments from about 30 weeks on. I walked away confident that I was in good hands and God pushed me a little bit further with a phone call that afternoon. I had been in contact with my Labor and Delivery nurse from Keegan for almost the past year. I had been curious about her thoughts on nursing programs and thought it might be something to look into. I also, honestly, wanted to be in contact with her from time to time. She was the best possible nurse I could have had with Keegan and I felt empowered by her assurances and when you feel empowered by someone in a loving and strong manner, you want to be in contact with them. I had sent her an email to update her on Raptor and the problems we might be facing, she asked me to call her work number and, finding some available time that afternoon, I did. It was an amazing phone call. I found myself fully embraced by this woman I had known basically for 12 hours. She understood me and was able to speak to my heart in a way that few had so far. She cried with me on the phone, she assured me that I had her support, and she told me some very profound things, both about myself and about life in general. She reminded me that it is a myth Christians have that "God doesn't give us more than we can handle." She reminded me that God absolutely puts more on us than we can handle, if He didn't give us more than we could handle then we wouldn't need Him. She understood that I was struggling at this time, that I felt more than I could handle, and that it was so hard to have joy and sorrow in your the depths of your heart at the same time. Once again, I walked away from an encounter with her empowered. I knew when she delivered Keegan that she was meant to be in our lives...I told Matt, I told anyone who would listen that she was meant to be our nurse...I thought I was crazy (and I very well might be), but in this case I was right. I have her assurance that she will help me navigate whatever medical terminology and baby medical needs we might have and hopefully she will be there to help deliver this one. Another little gift God has placed in front of us...a long time ago, but a gift nonetheless. Fast forward to amniocentesis. The nauseous nerves came back up and bubbled inside me with each moment that drove near. We met with Genetic counselor and went over what tests we wanted ordered. Because of difficulties with our insurance company we made the difficult decision to forego the FSH test that could give us preliminary results about three possibilities in two or three days. We had resigned ourselves to have to wait it out and wanted the full spectrum of information all at once. We ordered the full chromosome analysis and a microarray that would tell us pretty much everything they could tell about Raptor's chromosomes. Because of some things that sometimes show up on microarrays we both had to do blood draws which was bittersweet. In pregnancy a women gets very used to having blood draws done for a vast number of tests needing to be done so...yay...more blood. On the other hand...for the first time in all of our pregnancies, Matt had to go through it too! We then told our Genetic counselor that because the results were due back the same week as my 20 week appointment with Dr. Norton that we would just wait for her to tell us in person if that was possible. I had this sickening image of the girls being tired and hungry as I rushed us through a packed HEB and receiving the call with very important news about the Baby. I didn't want to receive that information on my own, I wanted Matt there to hold my hand, I wanted it to be in person, and I wanted my Doctor who really has earned that right from our perspective to be the one to let us know about our Raptor. We will only have to wait a few days extra, we have a day that we are pretty sure we will find out, and so we are calm about this for the most part. The ultrasound today gave us no new news. The baby is still proportionate and has no huge indicators of anything wrong. The spot on the heart is still there which made it difficult for the doctor to see part of the septum in the heart, but we knew that we were going to have to go to a fetal echocardiogram anyways to look at the heart in more detail. We did get one refreshing piece of news, the neck measurement has decreased in size from 5.5 mm to 4.2 mm which is not only good in itself, but also with the fact that the baby has grown 5 and a half weeks since that measurement was taken so it brings the measurement ratio down a lot. It doesn't change our risk factor, but we take comfort in the fact that Raptor has less of a thick neck. The amnio went perfectly and I was told I was the only patient they ever had who laughed during it being done. They do not numb you up for the procedure and it is a very odd sensation to feel a needle going through your skin, through your fat, through your muscle, and into your uterus. It hurt a bit, but I practiced my natural childbirth relaxing and avoided looking at the needle at all costs. I am still a bit sore now, kind of like a stitch in your side from running. I have been on "couch potato" rest all day and should be good to go tomorrow. We know that preliminary testing is a personal decision. We have friends that avoid it at all costs wanting a peaceful and stress free pregnancy and we have friends, like us, who go through with it to know and prepare. Despite the stress, the worry, the tears, I am glad we have the opportunity to know before hand. If I am going to have to release that image of the perfect baby I have in my mind, the baby who has no struggles and no worries, the baby who truly doesn't exist no matter what number of chromosomes it has, I would rather do it now than at delivery. If I have to have pain and strife and anger at this pregnancy, I want it now so that I can be done with it and move forward. I personally, do not want to be the mom who is shocked at delivery with no warning of what might be coming. I want to know now for so many reasons and I am so grateful for modern medicine that helps us know these things ahead of time (if we desire). I am beginning to readjust and reattach myself to Baby Raptor already. I pulled out two newborn onesies from our bins to look at and love on for awhile. I resumed petting and rubbing on my ever expanding baby bump. I washed all of our nursery bedding and began to get excited about organizing things for the baby (I know it is early for nesting, but this is about me being able to do something for the baby that I can control). I prayed to God for me to fall head over heels in love with this baby and that in the meantime He might love the baby enough for both of us. That God would surround this baby with such loving feelings that any anger I felt did not permeate into his or her delicate self. I played Casting Crowns "If We Ever Needed You" on my iPhone on my belly so baby could know that I needed God to help me through this. I listened to "Bring on the Rain" on rainy days so I could calm myself and just soak in and process this huge spectrum of feelings I had. Matt and I re-decided on names and "argued" about whether or not I should paint a mural in the nursery. Matt has been amazing and supportive through this whole process and I hope he knows how much his quiet strength has meant to me. He felt a little bad when I told him how good my conversation with my nurse went and I assured him he has been exactly the man I needed him to be and that my nurse was the kind of woman I needed her to be. The internet research continued and still does. I read facts that there are children that have Down syndrome who are higher functioning that children who have autism. I took this information as a reminder that we never know who our children are going to be and what needs they might have. We can only do the best with what we are given and hope it's enough. We can only work to help ensure that potential is reached and that they do their best in most situations, whatever that best may be. I was reminded that there are so many possibilities for all of our children in this day in age and I will have to work hard to make sure all three kids get what they need. I have been reminded that having a child who has Down syndrome does not define our child or our family and I keep telling myself that it could be could be way worse. While this is not a diagnosis we hope for, we know it is a possibility. In fact we know it is about a 20% or 1 in 5 possibility. We know that either way this Baby is going to have some extra monitoring and doctor appointments later in pregnancy (I have had 7 appointments so far and have at least 6 more in the next 12 weeks alone). We know that extra chromosome or not, this baby will change our lives because all babies do. We know that extra chromosome or not, this baby has taught us a lot already...about others, about ourselves, about the state of this world, and about patience, acceptance, emotions, and strength. We have learned a lot about friends and family. Unexpected people who bring you meals, come to spend time with you, who patiently remind you they are praying, who tell you they love you and the Baby no matter what and who tell you how beautiful and glowing you look despite the stress you feel. We are thankful to those in our lives who have reached out, those who have said and done exactly the right things, and those who have tried. We love our Baby Raptor. We patiently await two and a half weeks from now to look at the picture of his or her chromosomes (hopefully we remember to tell Dr. Norton to cover that gender chromosome up) and to find out more about what Baby needs from us!


The Marin Family said...

Beautifully written! So glad you were able to capture this at such a busy time for you. Continuing our prayers for your beautiful family.

Anonymous said...

Hi Ashley,
It has been a looong time since we met and last saw each other. Still, I follow your posts and photos about your beautiful family and your beautiful children. I have enjoyed reading about your family' adventures. I am getting ready to start a new phase of my life, working and living on my own, and have begun to understand this year a lot that I didn't used to; experiencing this transition as well as going through some tough stuff the past year and a half, I have also wondered what it is that makes life meaningful, what fulfills us beyond our day-to-day routine. Reading about your experiences and your perspectives, insights, and approach to the challenges you face, feels like I'm reading "the secret of life." Thank you for your thoughtful and powerful writing that allows someone who has never had a child and is likely years away from even marriage to understand your struggles and joys. You are in my thoughts and prayers, and though it seems you are brimming with strength and love, I will wish you more of it- there does not seem to me to be a any negatives to having a cup overflowing with strength and love.
Shira S. (From the JFR's summer institute for teachers)