Back to reality

28 Mar

I think we’ve been living in a fantasy world these past two weeks since our last ultrasound (which was overwhelmingly positive, perhaps our best ever this pregnancy). For the past two weeks, it’s felt like everything will be okay and we can breathe a little and enjoy the pregnancy and forget, at least a bit, about the trials that await us.

Today’s ultrasound was splash of cold water in the face.

I don’t have any growth to share, because they didn’t check it. They were solely focused on looking at the bowel today. And things have taken a turn. At our last ultrasound, the dilations had not grown. After weeks of growth, they were holding steady around 1.5 cm, comfortably below the 2 cm threshold we were told was the point at which we would start to worry about them. We fervently hoped that this meant any constriction of his bowel had leveled out and no further damage was being caused.

Today, they were bigger, and one, or perhaps a few (not exactly clear on this), is over 2 cm. Dr. Kind said he saw one at 2.4 cm. This was what we had been dreading and I didn’t know what would happen.

Here’s what happened: he called Children’s Hospital. He wanted to talk to “our” surgeon (the one assigned to our case) about, I’m guessing, what to do in this situation. This pretty much scared the living daylights out of me when he went to make that call. He came back from connecting with the surgeon and said the surgeon said to “do nothing.” He said this happens and you just have to watch and see what happens, essentially.

Which – we knew. We knew there was nothing they could do now. Dr. Kind made it pretty clear that if they delivered him now, he’d die. Vast prematurity plus gastroschisis, he just couldn’t live, he said. In fact, the earliest they’d want to deliver me would be 36 weeks. This gave me the feeling that if I don’t make it to 36 weeks, Turtle doesn’t have a very good shot at life. 36 weeks! Forget viability, 28, 32. 36! That’s seven weeks from Saturday.

Saturday, my shower. I kind of collapsed into a mess of tears leaving the office, thinking about all the plans we’ve made. How I’m scheduled to get my hair and make up done, how we’re unveiling the nearly complete nursery. All these things for a potentially very sick baby. It hurt so much. It still does.

DH and I went outside and I cried into his shoulder and he was strong for me. And then we went and sat in my car while I continued crying and we just coped with what we had learned. Or not learned, as it was. We still don’t understand the point of going through this dilation monitoring roller coaster if there’s nothing that can be done at this point. He’s either going to make it to be at a viable point for delivery or he’s not. And if he does, he’s either going to survive all of the surgeries and we’ll get to take him home, or we won’t.

This is the risky tightrope we must walk in order to have a chance at building our family. And I hate that part of me that shouts, but it’s not fair! Because I know life is not fair. Shitty, horrible, unfair things happen every single day and as far as lots in life go, I still think mine is pretty good.

We sat there in the car and began to get mad at ourselves for living in this fantasy world these past two weeks. For hoping, basically. For letting our guards down. We should always have a defense up, we agreed. But then no, we said. Why shouldn’t we hope? Why shouldn’t we have faith? We’re still figuring this out.

But in the midst of that discussion I realized that we need to go full force ahead. I’m going to celebrate this baby on Saturday with a smile on my face and my head held high. Because even if this story doesn’t end with a relatively healthy living baby of ours, I want to know that we loved and cherished everything along the way. That we believed in him and we celebrated him. I think I would regret not doing this much more than I would regret doing it.

Just need to make sure I get a few more tears out before Saturday comes. Wring myself and hang me out to dry. I’m determined to make it as happy as possible.


22 Responses to “Back to reality”

  1. nickeecoco March 28, 2013 at 8:24 pm #

    Oh, Shelley I’m so sorry to hear this. I don’t understand the continued monitoring either if there is nothing yet that can be done.

    I’m praying for and thinking of you and your little one. It really isn’t fair, but I hope it all turns out well for you and your family.

  2. Amy March 28, 2013 at 8:48 pm #

    I am so sorry for the scary news. Of course it isn’t fair, and I think it’s okay to feel that way about it when you need to. I’m guessing that the constant monitoring is just to let the physicians know as accurately as possible what they will be dealing with when the time comes. I hope the shower is wonderful – you deserve a wonderful celebration, and I think you are going into it with a perfect attitude. Not that you have to keep it up all the time – it’s so okay to go back and forth. There are so many highs and lows in this journey of yours. Just keep putting one foot in front of the other and know that we are all here for you and rooting so, so hard for Turtle!

  3. nonsequiturchica March 28, 2013 at 8:51 pm #

    Shelley I’m so sorry to hear about your latest appt. It must be the most frustrating thing to continue to go in for scans, but know that nothing can be done at this time.

    I do think that you have the right attitude though. You can either make this a really sh*tty 7+ weeks of your pregnancy where you are worried, crying, and unhappy, or you can believe in Turtle and that he is strong and will pull through this.

    I hope that you have a great shower this weekend.

  4. Lisa @ hapahopes March 28, 2013 at 10:50 pm #

    Sweet Shelley, I don’t know what to say except that I’m thinking of you. I hope you have a lovely shower and that you celebrate your heart out with family and friends.

  5. Jenny March 28, 2013 at 11:19 pm #

    I’m so sorry that the latest scan didn’t give you better news. But you have exactly the right attitude about having your shower and celebrating your little boy. You’re all in my thoughts. *hugs*

  6. Theresa March 28, 2013 at 11:40 pm #

    Oh damn, I’m so sorry about this news. I definitely don’t think its wrong to hope or to celebrate Turtle at the shower Saturday. I hope that you are able to really enjoy yourself and the company of everyone there to celebrate your little one. How frustrating it must be to have to go through those scans and still know there is nothing you can do. Thinking of you guys.

  7. Alicia March 29, 2013 at 1:19 am #

    Oh Shelley – this makes my heart hurt for you. I’m rooting for you, your husband and little Turtle. Lighting a candle for you three tonight. Take care and don’t lose hope… Turtle needs you. You’re such a good mom.

  8. Stacey March 29, 2013 at 2:42 am #

    Big hugs. You are such a wonderful mama already. Lots of prayers for you and your baby.

  9. Courtney March 29, 2013 at 3:10 am #

    Oh Shelley, this is so hard. I had no idea that getting to 36 weeks for Turtle was so critical – what a big surprise right as you’re feeling good about things. I’m sorry the dilations are bigger than they were last time – I’m sure that’s very worrisome for you. I do like that you’ve chosen to celebrate him, even though I’m sure that’s hard at times. I do think that he is going to get here and get well quickly, but I’m sure you just want to fast-forward to that point in time so that you KNOW that he is going to be OK. Uncertainty is always hard, but when it involves the life of your child, it is almost impossible.

    I am thinking of you… and will be this weekend too! Enjoy your shower as much as you can. You will be surrounded by love, both around you and within you!

  10. sass March 29, 2013 at 5:38 am #

    Oh Shelley, this is so hard. Sending you lots of hugs and strength. I have a feeling that everything will be okay in the end, but you do have a roller coaster ahead. Remember to be kind to yourself and ask for help when you need it.

  11. alloallo March 29, 2013 at 6:12 am #

    Just thinking of you during all this. Such a horrible hard tightrope to walk, wanting to celebrate, feeling as though you are holding something back. Im really in awe of how well you’ve been able to articulate all this when I just feel like a big ol swirling mass of either joy or anxiety most of the time. Turtle is such a fighter and has come so far, ad so is his mom.

  12. jjiraffe March 29, 2013 at 7:08 am #

    This hurt my heart to read. I don’t know why this monitoring is being done so closely either if there’s nothing to be done.

    Wishing and praying with all my might for little Turtle.

  13. KeAnne March 29, 2013 at 7:50 am #

    Oh Shelley. Hugs, hugs & more hugs for you. I am so sorry about the news from this appointment, but I love that you have decided to focus on celebrating him at your shower. Thinking of you.

  14. Jules March 29, 2013 at 12:16 pm #

    Hi Shelley, I found you through the podcast and have been sort of distantly following along with your story. Jjiraffe mentioned you on Twitter so I came to offer support and well-wishes. I’m really pulling for you guys, and for Turtle. I do hope you’re able to process everything in a way that lets you enjoy your baby shower, and I hope the next ultrasound brings more encouraging news ❤

  15. Courtney March 29, 2013 at 12:31 pm #

    I’ve been thinking and wondering about this. I know they prefer 36 weeks, obviously, but did Dr. Kind say when the earliest is they would deliver? 32 weeks is better than 28, I have to believe. I think its interesting that 28 weeks sounds SO promising to us all (I’m looking forward to hitting 28 weeks myself) but it really is quite premature, like you said in your post. I just have to believe that Turtle has greater chances every week that goes by.

    Hang on there.

  16. Geochick March 29, 2013 at 2:46 pm #

    It isn’t fair and it sucks. I’m sorry you didn’t get good news at this ultrasound.

  17. chon March 29, 2013 at 9:46 pm #

    This is such scary news. I don’t blame you for being scared. The only thing I will say is the u/a can’t see all and sometimes they get it wrong.

  18. Belle March 30, 2013 at 12:41 am #

    Shelley, my heart is breaking for you. I can’t begin to wrap my mind around all of this. I am sending you, husband and Turtle all the good, strong thoughts I can muster. Sending you love and light for tomorrow. xoxo

  19. Aplatanada March 30, 2013 at 3:08 am #

    You’re right. It’s not fair. It’s not fair at all. And just because shittier things happen to other people, it does hurt any less when something shitty happens to you and your family. And this is plenty shitty.

    Take care of yourself, and let others take care of you. Enjoy your your shower- you are right to see it as a celebration of how far you’ve come and embracing every moment of this pregnancy since Turtle’s arrival.

  20. slese1014 April 1, 2013 at 8:56 pm #

    Thinking of you and Turtle….keeping you both in my prayers. I’m so sorry you’re having to go through all of this. Sending hugs! I wish there was more I could do or say to help you. Just know I’m thinking of you!

  21. Lisa April 2, 2013 at 4:37 am #

    Thinking of you. This little boy is going to be so loved (he already is). I hope you enjoyed every minute of your shower and also got some great loot! It seems so unfair that people with such hard-fought pregnancies have to deal with any complications whatsoever.

  22. Eve April 8, 2013 at 2:46 pm #

    In am just beginning this whole process and it is clear that the worry never ends, even after the child is born. You are already an incredible Mom and Turtle is very lucky. I am rooting for you and I have faith that everything will work out ok. If you want to learn more about me, here is my “fairly new” blog.

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