Saturday, May 4, 2013

The Sadest of Days-Baby #4

So I am about to share an incredibly personal experience publicly, which is not like me but I have to reach someone somewhere who might go through the same thing as me. So Michael and I were excited to get pregnant with what we thought would be our 4th and final baby, we had high hopes that maybe just maybe we would be blessed with a boy this time around. When I found out we were pregnant I could not shake this feeling of sorrow and just felt very down, I just chalked it up to 1st trimester blues and figured it would pass by week 12. So we made our first appointment at week 12 to hear the heartbeat and get an estimated due date in March. I am always nervous at the first appointment because I lost a baby right before Vaeda(our youngest) and didn't find out until we had our first visit to the midwife. I had to have a d&c performed the following day after not hearing a heartbeat. Needless to say we went in for this appointment and my midwife could not hear a heartbeat and of course I started to panic so she was kind enough to send us for an ultrasound right from the office. As we drove to the ultrasound all I could think was this is why I felt so bummed these few weeks, because the baby was dead. So I tried to prepare myself for what I thought was inevitable. When the tech took us to the room to see the baby I had the hugest lump in my throat, and then she pulled up a strong heartbeat and I thought I would cry right there. BUT then she continued to look multiple times around the neck of our baby and said she was seeing an increase in nuchal translucency behind the neck and that she was going to grab the doctor. Michael and I were confused and now they wanted to do an internal ultrasound to get a closer look. So in comes the doctor(who I had never seen) and she tells me that an increase in the fluid behind the neck is an indicator of genetic abnormality. She tells us that the baby should have below 3mm of fluid and our baby has 6mm of fluid. So of course I am like "What the hell does that mean?!" she says this increases the likelihood that the baby has a trisomy problem...trisomy 13, trisomy 18, Downs Syndrome or Turner Syndrome. I said what are the chances of this and she said it was an 80% chance that the baby had one of these. Then we had to meet with a genetic counselor, at this point it was an out of body experience. I seriously felt like I was watching a lifetime movie or something. They all just kept apologizing and I couldn't shake this feeling that I wanted to punch every one of them for being sorry for my baby. So the genetic counselor invites us in a small room where she is going to explain all of these trisomy issues with us. She asks multiple times if Michael wants to take the girls out of the room and we just kept saying no because I mean what the hell it's their life as much as it is ours and we were going to tell them anyways what was going on. We do not lie to our kids we try to involve them in life and feel that it only allows them better coping skills. So here in this small suffocating room we learn about everything that could be wrong with our baby and we leave feeling like the baby was dead already. It seemed like termination of the pregnancy was said a million times and she kept pushing tissues towards me even though I was in such a state of shock that I couldn't even cry. I couldn't help but feel like these people were completely full of shit, I mean they are measuring fluid for God's sake! Fluid moves and it's an ultrasound which are not that accurate anyways, I mean how many people do you know have been told they are having a 9 lb baby and it comes out an average 7lbs?! So after the bomb hit and was rubbed in we left. We didn't say much o the way to the car, I think we were both just in disbelief. When we got in the car I called my birth bestie Stephanie and told her what was happening and then it kind of sunk in that something could seriously be wrong with my baby and I cried. The option we had to find out was either and amnio or a new blood test which tests for genetic abnormalities, it had only been out for 6 months but had a 99% accuracy so we opted for that because why risk the baby with amnio if we didn't have to. The next day I went with my cousin(who I was so thankful dropped everything to go with me) to give blood and then started the 10 days of waiting until we knew what was going on with baby #4.  We told our girls what was going on that day and Madilyn was upset and concerned that the baby would die and I just remember reminding her that we could have miscarried at any point anyways that there is never a guarantee with pregnancies, and Fiona randomly just said, "well I hope our baby has downs syndrome because whew those babies are freaking cute!" I could have just ate her up right there with her rainbow glasses she had on. Over the 10 days I submerged myself in research about every possibility and actually convinced myself that the baby was going to be fine. I must have prayed 5 times a day and told many people so that they would pray for my baby as well. I will say I cried multiple times a day and had serious emotional breakdowns in the shower. I started to call the office at day 7 to check for results and finally on day 9 I got a call from the genetic counselor while I was in  target. I had to answer because honestly I thought she was going to say the baby was fine. Madilyn was pushing Vaeda around while Fiona checked out toys, my wonderful little Maddi knew exactly what to do while I was on the phone and walked by me numerous times looking at my face to try and register any kind of hope. So the genetic counselor, Kristen, says to me that the baby was missing an x chromosome and that was an indicator that not only was the baby 100% a girl but she had Turner Syndrome. My heart sank, with the research I had done I knew this carries a 99% chance of miscarriage well into the third trimester even. I immediately just thought well she is going to die if she is not dead already. It was strange because right then and there I had no ounce of faith in any way. I told Maddi the outcome and she started to cry and I just remember saying, "we always knew this was a possibility and it just wasn't meant to be, we will get through this" but I felt like it was a total lie. I had no clue how I was going to get thru this. My heart was filled with sorrow and I had never been so sad in all my life. I have dealt with a lot of shit in my life but this was a whole new realm of sadness for me. We were having another girl, a sweet baby girl who probably looks like her sisters and yet may never be a part of our lives. After speaking with Michael who gave me hope, I demanded an ultrasound for the following day even though he could not make it to the appointment I had to see her. I felt like I needed to know what kind of progress she had made and that would help me better gauge if she would die. My cousin again went along with me, I can't say enough what it meant to me to have her be there. In these appointments the technician looks to see if the fluid has grown, this is now called a cystic hygroma, and to see if she has developed these other things called hydrops. Hydrops form when the baby's kidneys and heart begin to fail, they are pouches on the body that fill the body with fluid. I went in thinking  I would hold it together regardless. So the screen fills with my baby girl and there it is the cystic hygroma, grown to 1.67 cm from 6 mm 10 days prior and 3 hydrops on her chest and 4 on her back. She was going to die for sure, but there she is with her little hand resting on her face and her dainty legs crossed, heart beating at a normal rate. She was alive and living a life that would never see light. Seeing her was heart wrenching I wanted to snuggle her and kiss her and I basically was realizing at that moment that I loved her and she would die. From here what do I do? At this point she could die that day or the doctor said he has seen babies with this big of a hygroma make it all the way to 22 weeks gestation. My first instinct was to completely try to detach myself from her and the pregnancy. I tried to squeeze my big ass in to normal clothes and started watching what I ate so I would lose weight. I even started to wish for her death so that this all would end. At week 16 if she passed on then or after then I would have to deliver her because if they performed a d&c when the baby was that big then it could damage my uterus or cervix. I was already at 14 weeks and at that moment I hoped she would die soon so I didn't have to go through that pain and heart ache of birthing a dead baby. I was in the 2nd trimester at this point and my only option other than waiting for her to pass was abortion but then a 2nd trimester abortion they induce you anyways and you deliver a live baby who they sit aside and wait for her to die!WTF are you serious!? She already has to deal with shit while she is in there I would never bring her in to a world where she even had to spend a minute alive just to die. So that was that I would carry her until she passed away and then I would deliver her just like I did my other three girls. Weekly my doctor's office would monitor the heartbeat to see if she had passed to catch it early before I would deliver at home. With every week I heard her heartbeat a piece of me broke and I attached to her more and more. Which also meant I cried more and more and could not focus on anything. She was a fighter, regardless of the situation she wanted to live and just get trucking forward. With each passing week my belly grows bigger and nurtures her and I begin to want to be her mother. I have started to want to name her and maybe plant a tree in my yard to remember her. My biggest concern right now is the birth and emotionally what it will do to me. I have spoken with my practice of doctor's and have told them I do not want to see or hold her and that I want her given to science to study further why this happens. They continuously recommend holding her for closure but I just do not want to see her the way she will come out, I want to keep this beautiful little baby I have in my head as my memory. I still can't believe the feeling I have had since day one was legit. The body has an amazing way of letting you know the unexpected. For now I wait, every night I dream of her and what she looks like and what her name is but every time I wake up I wish it was all over, that her life would end soon so the agony stops.

4 comments:

  1. Kristan, Thank you for sharing your story. It has touched me in so many ways, and I'm sure so many others. I hate this for you and your family and especially your little girl. I am praying for strength, and peace through this tough and trying time. Only God knows what miracles will come of this happening to you. Everything in our lives is already planed out by him and I assure you something good will come of this. Give it to him and trust in his will. You are in my thoughts and prayers.

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  2. I was given the link to your blog by my sister who was very touched by your story. After reading, I felt compelled to share this with you even if it gives you only a glimpse of hope. My name is Brittany and I am a Cytogeneticist. I make a living analyzing the chromosomes of patients in the same position as you. I am fortunate enough to be the one who understands how things like this happen and not be the one who has to confront the families. It is very emotional for me to experience Turner's syndrome through the eyes of a parent as it is very different than how I experience it at work. I'm not a doctor and I'm still a very young Cytogeneticist but I just feel compelled to tell you of the young children that are alive and well with Turner's. I know the statistics for survival don't promote much hope, but I figured hearing first hand from someone surrounded by instances just like this would. Fact is, we diagnose children on a pretty regular basis with Turner's, so there is certainly a chance that your daughter will make it to term. I wish you the best in this trying journey. You and your family week grow stronger and closer no matter what the outcome will be.

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  3. @Brittany--I appreciate your knowledge about Turner's and I am hoping for the best for me and the baby. As of two days ago we had an ultrasound and it showed she only has 3 chambers of the heart and her lungs are not developing. She now has hygroma covering all of her head and it has gotten bigger over her body as well. There are many more hydrops all over her. Her legs, body and arms are all swollen two times the normal size and there is a huge amount of fluid in her abdomen and surrounding her heart. At first there was a very, very faint heart beat but then it picked up about 4 minutes into the ultrasound.She did not move much during the ultrasound but kept her little legs crossed and her right arm under her chin as if she was just relaxing.My hopes are not high that our baby will survive but for now she is fighting for the life she does have.

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  4. Kristen there is nothing I can say to comfort your family or you. Being someone who has had several miscarriages I know how it feels to want to have this baby. Once you hear your Childs heartbeat it is over.you already.know this being an awesome y mom already are. All I can say is I will pray for peace strength and serinaty during this time. My God be with you all.during this time.Kristen you truly are strong and beautiful woman.

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