Big Update

Originally a CaringBridge post. Link to original post is the date.

Jul 9, 2015 2:40pm

19 Weeks (7.9.15)

Today’s update is going to be chalked full, so bare with me on possible rambles. I promise there’s real information to read.

As of today, I’m 19 weeks pregnant. That means she’s about the size of a mango, 1/2 lb and 6 inches long. Obviously it should go without saying she’s a bit off on those proportions. She is still active and moving up a storm. Sitting still doesn’t apply to her in the least bit. I’m okay with that, although I do wish she’d let me sleep. Sleep sounds amazing right about now. Sweets have been her main thing lately. Everything from wanting apple pie, to cinnamon rolls and even strawberry shortcake… Yum, I might just have shortcake after I write this. 🙂 I’m not allowed to sit up straight! Aeirlyn hates to be mooshed and I think that’s what happens when I’m not laying down, or slouching in some way. To say that I get big kicks when she’s squished is an understatement.

In other news, Tuesday, July 7th, we went to see a maternal fetal medicine doctor. As I stated in a previous post, we were getting a level 2 ultra sound, talking to the doctor and the possibility of an amniocenteses. We decided against the amnio for now.

There is a 1 in 300 chance of complications and out of those complications the biggest one is pre-term labor leading to miscarriage. Having a history of pre-term labor with Kanin, and only being 18w5d at the time we decided the risk wasn’t worth the reward for now. We plan on having it done around 33-34 weeks. At that time we’d be near the end of my pregnancy and if labor did start, we’d have had adequate time with her. Adequate time… that’s a horrible word for the situation as the time we have with her will never be enough. Anyways, the risks now, vs later are still the same but a better situation then vs now. Having met the the genetic counselor we feel this is our best option. When the amnio does happen we’ve agreed on 2 out of the normal 3 tests they do with amnios. The test we all decided would be moot, was the AFP. That’s the one that they typically run on a genetic screening when you look for downs or other genetic problems. We already know she has a Neural Tube defect and the AFP would be off the charts high. Basically it’s not worth running again since it’d tell us something we already know.

The other two tests are more in-depth. The first one they’d take part of the amniotic fluid and grow it in a lab and watch how things progress and study it. This will give us an idea of chromosome locations, any duplications, deletions or anything else that might show up. The second one is pretty cool as well. They basically take the chromosomes and stretch then really big so they can see inside them. This gives them a look at all the stuff in the actual chromosomes and see if there’s something that contributed to her diagnoses. Having an amnio done is not a guarantee that we’ll get answers. It might just rule out all the “normal” stuff and tell us that we were the lucky ones to get this. Joy!

The next part of the appointment was getting to see our little girl. We knew going into this appointment we’d see how extensive her condition was and if there were any other deformities visible. I knew going into this it’d be bittersweet and full of emotions. Sweet because we’d get to see Aerilyn’s sweet face, bitter because we’d find out if there was a chance she’d survive. From the very beginning of this journey I’ve known her chances at survival were bleak at best. There have been many people who have hoped and prayed she’d be one of the lucky ones. One of the babies who’d survive for weeks, months, years… I had hope, but I was realistic.

The ultrasound started out looking at all her anatomy, which wasn’t easy as she never stopped moving. We saw her perfect little–or not so little– feet. Legs that were crossed at the ankles and how perfect her bones were forming. Her stomach was in the right place with visible ribs and umbilical cord insertion. Again, all exactly how it was supposed to be. Next her arms and hands. All perfect fingers visible, arm bones in the correct place and she liked to keep her hands near her face. Her spine looked amazing, no signs of spina bifida and the vertebrae lit up like in a normal ultrasound. Soon we came to her face. Her nose and mouth were formed and there were no signs of cleft lip or pallet like there can be with anencephelitic babies. That’s where her perfection for a “typical” baby ended. Once we came to her face you could see the differences; she had/has no forehead… Her skull stopped forming at her brow line. There’s nothing but exposed brain from brow line back. Having no forehead means her eyes have done the typical movement with these types of babies. They’re spread further apart than a baby who has more skull and her eyes are a bit bulged.

After talking with the doctor he said the best we can hope for is a comfortable passing and just to do comfort care for her. Which means he thinks that any life sustaining measures (feeding tube, ventilation, oxygen etc) would only prolong the inevitable and not help in the long run.  This is a devastating blow, how could it not be? We were hoping for some time with her alive and now those chances are even smaller. 75% of babies diagnosed with anencephaly are stillborn. That gives us a 25% chance of time with her alive. Regardless if she’s alive when born or stillborn, we will spend hours with her. However, her being alive is what we really want. To see the life we created, even for a few minutes, shine in her.

While describing the ultrasound process I realized I wrote the word perfect  at least 3 times. It’s exactly what she is and why this world is so cruel. She is perfect in every single way, except missing her skull. How fucked up is that? How can we have possibly made a tiny human that is as perfect as she is, with the perfect name that we don’t get to keep? It’s not fair to her, not fair to Kanin and certainly not fair to us, her parents, who have wanted a little girl for so long. A sibling for Kanin, who is SO excited to be a big brother. Grandparents who’ve wanted a granddaughter. Aunts and uncles who’ve wanted a niece. Hell, even my nieces and nephews don’t get to meet their new cousin. So many people are affected by this tiny human, Aerilyn and she’s not even born yet!

Josh is amazing, he is a (mostly) constant rock and since he’s a fixer type of person, helping me helps him. Me on the other hand? I’m not sure how I go through each day. Many people haven’t heard or talked to me when I’m having an off day. Tuesday after our appointment, I was okay. I was okay breaking my mom’s heart when I told her there’s almost no hope for Aerilyn. Telling my sister and hearing how sad she was about it. I was okay.  The logical part of me had expected this outcome. Yesterday however, my emotions caught up with me. The hope I’d held on to since May 26th, the threads I kept alive for my family and friends , all of it vanished. I was not okay.

How do I become okay with the knowledge I more than likely won’t get to take my little girl home? That I won’t get to see her breathe, cry or even move? Anyone have the answer? I certainly don’t. I’ll never be okay with this, I’ll never fully recover. Only thing I can do is shift my perspective and look at the world differently. Josh and I have discussed possible children after this. I’m not sure that’s even in the cards for me. Besides the fertility treatments we will have to go through, there’s my innocence. My innocence? Yes, innocence. When a woman becomes pregnant she has hopes and dreams of what that little baby will do with their life. When they’ll walk, talk or if they’ll become a rock star or a scientist. The woman starts thinking about names, designing the nursery, whether or not you’ll find out the gender. All typical and natural pregnancy expectations. If we were to get pregnant again I’d be filled with nothing but anxiety and trepidation. Will this baby have anencephaly like Aerilyn? There’s a 4% chance of that, and we’ve beaten the odds before with Aerilyn, I wouldn’t put is past the universe to be cruel again. Will this baby have another defect, will this baby survive the first trimester, the 2nd, be stillborn? I would be scared shitless and wouldn’t enjoy the pregnancy!

Those little things go through my head everyday. Seeing Josh with other babies, playing with and holding them. Knowing he won’t get to do that with his daughter. Kanin seeing babies at the mall, playing with them and knowing he won’t play with Aerilyn. The knowledge I might never have another son or daughter after Aerilyn.. Again, all that goes through my head. How do I become okay with the loss that she’s presenting, not just to me but to everyone? How others cope with her loss is on them. I can’t help them with that, only they know how to do that. That doesn’t take away from the guilt I feel over creating their grief. Logic doesn’t dictate my guilt, emotions does. Logically I can reason out so many of these questions. Emotionally I’m just screwed!

Which brings me to my next talk and possible ramble since the last couple paragraphs were off topic. Sorry. Kanin is being a typical defiant 3 year old. Although he’s praying upon my weakness right now. He’s like a predator in the wild. He smells blood and goes for it. Anyone have any ideas how to cope with a defiant turd? I’ve run out of options and normally I don’t air my dirty laundry publicly, but I’m at an impasse with him. Between battling my emotions each day about Aerilyn, the pressure of daily life, typical pregnancy tiredness and what I need to do as an adult and Kanin, I’m exhausted. I need advice or something before I put him in a straight jacket and lock him in his room…. I’m totally kidding! I would never ever hurt him or lock him away like that. Just use my imagination a bit. LoL.

Well… now that I’ve written a book, rambled, ranted and threatened (lol) my child on a public site.. I’m going to wrap this up. Sorry this was so long! But I did warn you. here’s my 19 week picture, and I’ll be adding her newest ultrasound pictures if you’d like to see. Thank you in advance for any advice.

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