Sigh.

28 Nov

I had planned to blog first about going home for Thanksgiving. The long awaited Thanksgiving where we’d finally share the good news with our families. I was going to talk about how infertility changed my perfect vision of what this would be like. How I worried the whole time that our Turtle was actually gone while we were telling everyone. How I made mental notes of exactly who had been told and how they would be untold. The fewest number of people we’d have to tell and how the grapevine would work.

But our NT scan came too quickly, before I had time for that blog post. And now I have to write this one. Okay, here goes.

So, we went in for our NT scan today. My one and only concern going in was seeing a heartbeat, first of all, and second, seeing an appropriately growing baby. Both of those things were apparent right off the bat. Turtle looked so much bigger, so much more like an actual baby! His or her heart was flickering away and we could see hands, a spine, parts of the brain. Eyes, nose, skull. It was unbelievable and we were beaming form ear to ear.

But then the ultrasound tech had trouble getting the specific NT scan image of the neck and profile that she needed. She said Turtle wasn’t facing the right way and kept pushing on my belly to get him or her to turn the right way. She said we’d take a short break then try again. She went to get me some water and gave me a lollipop to suck on while we waited.

DH and I were joking the whole time. Dancing around, trying to get Turtle to turn. I had a momentary thought that we didn’t know what was coming to us. It’s hard to describe, something like just knowing that this happy time was about to be taken from us. It didn’t help when she took forever to come back. And then I read a sign on the wall that said the ultrasound technician cannot give you the scan results, only a physician can. My guard is just starting to go up.

Eventually she came back and said the reason for the delay was because she was new to the practice and had to find out the protocol if they couldn’t get the right picture. She said the next step was to go to a Level II ultrasound with a specialist (red flag, ignored it) because they’d be able to tell us better. She tries again and still Turtle is not cooperating. She prints off a few pictures and sends us downstairs to talk to an OB. Supposedly this OB has to send us on our way to this other specialist. Odd in retrospect but we went with it.

Downstairs we went to wait for the OB. She comes in and starts sketching something on a piece of paper. I was hoping she’d be sketching the picture of the head they needed and would talk to us about why they couldn’t get it. But I see her label something as feet, then I see a belly button. Then she draws another similar picture, this one with no belly button and lots of squiggly lines coming out.

It appears Turtle’s intestines are growing outside of his or her belly. Some membrane burst, they don’t know why but it happens occasionally, and now they are just floating around in the sac. It’s a condition called gastroschisis. It will mean seeing a high risk OB for close and more frequent monitoring and it will mean delivering in Boston after all, at a hospital with a NICU. It will mean that Turtle will need a surgery, possibly two, not very long after his or her birth. If they can fit the intestines back into the belly, they will, but sometimes the belly isn’t big enough. Sometimes they have to stretch the belly out and wait for it to be big enough to receive the intestines. Sometimes the intestines are hanging out in a little bag outside the baby’s body for a few days or weeks.

Turtle will most definitely start his or her life in a NICU. We most likely will not get to hold Turtle until after his or her surgery(ries). Turtle might have a tube down his throat and will likely need an IV for nutrition for the first few days or weeks. Turtle will be undergoing general anesthesia as a tiny baby.

The doctor did a good job explaining everything as best she could. It was hard going in thinking we were just getting referred out for a little ultrasound technicality, only to learn our baby has a birth defect. Now we know why we waited so long. Now we know why we only received pictures of Turtle’s head, not his or her whole body. Now we know the real reason why we needed a Level II ultrasound.

I’m really struggling with this – obviously. DH is busy educating himself to the fullest. I am just trying to digest. It’s not the perfect start you want for your baby. How will this affect my pregnancy? How will this affect my feelings of excitement? I know Turtle will be okay. And I know he or she will never remember any of this, and will just have a tiny scar and a crazy story to tell. But for right now in this moment, with the information we have, it’s just really hard right now.

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43 Responses to “Sigh.”

  1. jjiraffe November 28, 2012 at 11:01 pm #

    Oh, Shelley. I am so sorry to hear this news 😦 I have followed a few bloggers throughout the last few years who have had this diagnosis for their babies, and everything went well. Let me dig around and find you some links. Many (((hugs))).

  2. Cristy November 28, 2012 at 11:04 pm #

    All I can do is cry. Oh lady. I’m so very sorry. Yes, there’s so much that can be done and I know that you are in good hands, but this isn’t what you deserve. You deserve nothing short of an easy pregnancy.

    Please let me know what I can do. In the meantime, I’m holding you in my heart.

  3. Pcosbarrenness November 28, 2012 at 11:08 pm #

    So sorry, sending prayers your way for strength!

    • Shelley November 28, 2012 at 11:42 pm #

      Thank you so much for these links Jess!

  4. Kristin November 28, 2012 at 11:21 pm #

    Ah, friend. Suck it. That just sucks it all. I’m so sorry.

  5. Fiona (palmtreemama) November 28, 2012 at 11:27 pm #

    I am new to your blog but Jjiraffe mentioned that you could use the support right now so I wanted to come by and give mine. I am so very sorry to hear this news of your little one. I can’t imagine how tough that must have been to hear. I don’t know a lot about this condition but thankfully it sounds like something that will be solved within a few weeks after the birth. But even with that in mind, I know it must be heartbreaking to hear and knowing your little one will have to spend the first few days/weeks of life in the NICU is something no mother wants to find out. I am thinking of you and your little one. Hugs!

  6. Lisa November 28, 2012 at 11:42 pm #

    I can’t imagine getting this news. It’s got to be very scary and upsetting. I’m so sorry that it’s taking some of the joy out of this for you. We work so damn hard for these pregnancies. Why can’t they just go according to plan? An old college friend of mine went through this and now has a totally healthy, developmentally normal young boy. I really don’t know what else to say but I’m thinking of you and your little Turtle.

  7. steph50 November 28, 2012 at 11:43 pm #

    I’m so sorry you’re dealing with this… There should be a Universe Law that makes it impossible for people who have gone through loss or infertility to go through this…. Big hugs to you xox

  8. sass November 28, 2012 at 11:44 pm #

    Lots and lots of hugs to you my dear. This is a lot to process and so hard to hear. If there is anything I can do, please let me know. You are in my thoughts.

  9. Katie November 28, 2012 at 11:46 pm #

    The fear of the unknown is the worst. I hope you can get e best doctors and the best plan lined up for you guys. I am sorry you have this added stress. Praying for you.

  10. Jenn November 28, 2012 at 11:53 pm #

    Oh, Shelley, the shit just never ends, does it? I’m glad you are able to take comfort in knowing that Turtle will be just fine, but I can only imagine how hard this is for you. I’ll be thinking about you, the Mr., and Turtle. Let me know if you need someone to vent to.

  11. cassiedash November 29, 2012 at 12:05 am #

    Oh, no! I’m so sorry for the bad news. I know this is not the way you had imagined and hoped your baby’s life outside the womb would begin. You have every right to struggle with this news and to take all the time that you need to digest it. It sounds like a lot to take in. But I hope you can be reassured that your little turtle will be okay and, in the end, that’s all that really matters. ~ hugs ~

  12. Jenny November 29, 2012 at 12:37 am #

    Shelley, I’m so sorry that you have this additional worry. Of course Turtle will be fine, but it’s just not fair that he/she will have to start life with NICU and surgery. I’m keeping you all in my thoughts.

    *hugs*

  13. Lisa @ hapahopes November 29, 2012 at 12:37 am #

    Oh sweetie! I’m so sorry. I can’t imagine what you’re feeling. Thinking of you and praying that he/she grows nice and strong and comes out just as big a fighter as his/her momma.

    Lots-o-hugs

  14. Theresa November 29, 2012 at 1:31 am #

    Oh man, I am so so sorry. 😦 HUGS

  15. Bon November 29, 2012 at 1:56 am #

    Sending love and virtual hugs! (Virtual hugs from a stranger are okay right? Not creepy?)
    xx

  16. slese1014 November 29, 2012 at 2:02 am #

    OH I am so sorry….As a NICU nurse, I have seen my fair share of gastroschisis. My hope is for your baby to have an excellent surgeon and a quick recovery….I would be more than happy to help you in any way I can, feel free to email me! Sending you hugs and love and all sorts of good thoughts!

  17. danielletoendure November 29, 2012 at 2:02 am #

    Shelley, I am sooo sorry to to hear this. News like this is never easy to swallow. And then, we feel so helpless as mothers. We want to protect our little ones in our womb from such huge things as surgery and anesthesia and “birth defects”….and we can’t always do that. And we are left with a heavy heart and lots of worry. I’m thankful some of the bloggers know others who have been through this and through those stories you hopefully will be able to find more peace and understand with the situation before you guys. Sending you lots of HUGS!!!!!!!!

  18. Trisha November 29, 2012 at 3:06 am #

    Oh Shelley, I’m so sorry to hear this sweetie. This is not what I wanted for you, you deserve nothing but a happy and healthy pregnancy. I’m sure it is extremely difficult to come to terms with this but I’m also sure that the doctors are going to do everything they can for turtle. The circumstances are not ideal, nor will it be easy, but you guys can handle this. Turtle is going to fine and beautiful and loved. Sending you lots of love and support sweetie.

  19. Courtney November 29, 2012 at 3:11 am #

    Oh, Shelley, I’m so sorry that this is happening. This is not what anyone expects at their NT scan. From what I’ve read and seen in the past, the prognosis is great for babies with this – but I’m sure that doesn’t make it any easier on you now. Hang in there and know that lots of us are thinking of you.

  20. chon November 29, 2012 at 3:49 am #

    Shelley I am just gutted for you. Hearing that there is something wrong is the absolute worst thing. Hugs.

  21. Amy Skins November 29, 2012 at 4:28 am #

    Not fair. Not fair not fair not fair. Prayers for you guys and turtle. Someday turtle is going to have all these stories about the incredible love his parents surrounded him with, even before he was conceived. Be strong, mama.

  22. Hattie November 29, 2012 at 4:43 am #

    Oh Shelley, how scary. I hate that yiuve gotten bad news adter everything ekse.

    Thinking about you as you continue to educate yourselves and get more information.

  23. alloallo November 29, 2012 at 9:26 am #

    I’m so so sorry that you’re having to deal with this after everything! But heartened to know there is such a good prognosis and that you guys are getting good and thoughtful care. Thinking of you

  24. B. just cycling along November 29, 2012 at 11:06 am #

    I am so sorry that you have this additional worry, and can’t just blindly enjoy being pregnant for at least a little while. It is so unfair after how hard it was to get here. I know no parent wants to start in the nicu, but it sounds like your baby will be okay, so I will continue to hope and pray for that. Thinking of you lots.

  25. Belle November 29, 2012 at 11:15 am #

    Shit Shelley. Saying “I’m sorry” just seems so…. trite right now. I’m so sad for you, your husband and little Turtle. I’m glad that science is on his or her side, but really wish you could have the complication-free pregnancy you deserve after going through all of this. I’m keeping the three of you in my thoughts and am here if you need anything. xoxo

  26. Ms. Future PharmD November 29, 2012 at 2:46 pm #

    Abiding with you. This sucks a great deal. Boo. I’m thankful that there’s a good treatment for this and it will eventually lead to a normal life and excellent stories.

  27. Geochick November 29, 2012 at 3:51 pm #

    Oh my. Speechless. I’ve been listening to Bitter Infertiles for a while now and I was so hoping you would have an easy pregnancy.

  28. Joanna November 29, 2012 at 4:13 pm #

    Oh Shelley, I’m just speechless. I’m so so sorry. I am holding you, your husband, and your sweet little Turtle in my heart and sending up so much love and prayers. I think it’s a great idea to educate yourself on this issue and it might also be helpful if your clinic could put you in contact with other parents who are going through this same thing, kind of like a very specific support group. Remember you and hubs are strong and you always have love and support from all of us here in the blogosphere. (((huge hugs)))

  29. ewagner123 November 29, 2012 at 5:39 pm #

    I am so sorry you’re going through this. I have no clue about this condition, but it sounds like it’s not fatal right? Little turtle has a fighting chance! It must be so hard to learn about a birth defect. Big hugs. I hope everything works out for you.

  30. Mrs Bun November 29, 2012 at 7:40 pm #

    Shelley I’m so sorry that you have had to receive this news – I was really hoping for an easy pregnancy for you xox

  31. I am so sorry Shelley. I can’t even imagine what you are feeling right now. At least there is a fix, I just wish it didn’t mean you not being able to hold your baby right away.

  32. talesofacautiousoptimist November 30, 2012 at 1:41 am #

    I am so sorry. I could not even believe what I was reading. Life really sucks enough for infertiles, no need for further bad news. The tone of your post seems like you are taking everything in stride. You are going to have horrible days and not so bad days ahead in thinking about how everything will play out when Turtle arrives. I’m sending you and Turtle tons of positive thoughts and hope for the best because you truly deserve to get your happy ending.

  33. Aplatanada November 30, 2012 at 3:00 am #

    Oh, Shelley. This sucks so hard. We need to send a message up to the powers-that-be telling them, in no uncertain teams, that you’ve been dealt a hard enough time, and it’s time to give you guys a break already. I wish there was something I could say to take away the fear. Just know that you have a ton of people here supporting you and cheering you and Turtle on every day. Hugs.

  34. Marisa November 30, 2012 at 4:32 am #

    Shelley, I am so sorry to hear about your bad news. I too am speechless. This is just so unfair! I am glad to hear that there is a plan and that babies with this can go on to have healthy lives but still, this just sucks. I’m so so sorry.

    • Tami November 30, 2012 at 1:44 pm #

      With love, support, compassion, and hugs- we are all here to rally behind you. I hoped for a easy pregnancy but the strength you’ve aquired during your infertility will help you. You are a great momma and this baby will thrive with your love.

  35. JustHeather November 30, 2012 at 2:46 pm #

    Many hugs and sending much positive thoughts your way.
    I know this isn’t something any parent wants to hear, but I feel a bit better reading in many of the comments that this is something that is recoverable. May you keep up your strength!

  36. cindysn November 30, 2012 at 4:37 pm #

    I am so sorry that this is happening but to be positive there is a course of action to be taken and they found it now so once the baby is born they can fix it and she/he will be 100% ((((((((((((((HUGS)))))))))))))))

  37. nonsequiturchica November 30, 2012 at 9:04 pm #

    Positive and healthy thoughts being sent your way. This is certainly not ideal, but that is great news that it can be fixed.

  38. Alicia December 2, 2012 at 3:29 pm #

    Oh my god, just catching up. Hang in there – so happy to hear DH is busy educating… Keep digesting and processing – your baby needs both of you exactly as you are. Hugs.

  39. Her Royal Fabulousness December 8, 2012 at 3:04 pm #

    I’m sorry I am just catching up to this news now. I can’t tell you how much I am thinking of you and sending you support. Hug and cry and much as you need and keep hanging onto some hope for the best case outcome. At least Boston is AMAZING for NICU support…right?

Trackbacks/Pingbacks

  1. Things I want to remember « tales from the waiting room - December 26, 2012

    […] I’ve been living this pregnancy with one eye closed. Waiting anxiously for the next blow to fall. And blows there have been. […]

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