Wednesday, March 18, 2015

Blindsided yet again

I had intended for my next post to be a big AW post full of nursery pictures. This is not that post. And warning: This is not a happy post.

Yesterday (Tuesday) at 35 1/2 weeks I went in for a "routine" OB appt. The dr found that although I had actually lost a couple pounds my belly was measuring big - really big - and decided to send me for an ultrasound to see what the deal was (she suspected too much amnio fluid).

I didn't mind that I was going for an U/S - I hadn't seen my little guy since the 20 week anatomy scan!  I just felt bad that Hubs didn't come because I was sure he would have liked to see him too.  Spoiler: As it turns out, I ended up really wishing Hubs had come yesterday.

I thought the U/S would be quick - measuring the baby, seeing if there was extra amnio fluid, and determining his position. But after 45 mins on my back (very painful BTW) watching the U/S tech measure almost every bone in his body I began to get worried. She acknowledged he had a big head for his gestational age and that there was extra fluid. Besides that she didn't say much. Once done she told me to sit tight so she could just "run the results by the doc real quick".  When she came back she gave me a sealed envelope to bring to the doc and said they wanted to see me back upstairs again immediately. I had no idea what to think and carried that envelope like it was kryptonite. 

I had to wait 15 agonizing mins for the doc and once she came in she got right to business: The sealed envelope revealed that our son has dwarfism. His head and belly are in the 97th percentile and all of his arm and leg bones are in the <5 %. (Some <3%.) There is no doubt about it.  This child I'm carrying is a "little person".  Our little miracle rainbow, our happy ending, is a dwarf.  I am absolutely dumbstruck. Yet again.

Tomorrow is 1 year TO THE DAY that we went in to see the perinatologist and specialists and learned that Petey wouldn't make it due to his birth defects. And tomorrow we will be back there again, in the same place, with the same doctors, to learn about Rainbow's birth defects. Happy fucking anniversary.  I am apparently incapable of creating and carrying a healthy normal child. I am in complete shock.

Tomorrow (Wednesday) we will learn just how bad it is - what form of dwarfism he has, if he has other issues affected by this, what the complications are, what our next steps are...  There is also the issue that based on today's measurements I am actually measuring at 41 weeks right now (no wonder why I've been so damn uncomfortable). We will need to discuss what that and the excess amnio fluid means for labor and delivery. The doc said today that at a maximum they will not let me go past 39 weeks but even that may be a stretch. It also sounds like a C-section is pretty much a given because I won't be able to vaginally deliver a baby with a head that large.  As it is, their best guess on his birth weight is 11 pounds.  ELEVEN! She also mentioned that I may need to be sent to a different hospital to deliver.

I just hope that tomorrow we will be able to get clarity on his situation. I know NOTHING about dwarfism. It is something I have never once given any thought to whatsoever. And I didn't want to google too much but from what I could find it seems it is a genetic mutation and there are 4 major forms: The most common one (the one you see on the TLC show "Little People Big World") is also the one with the fewest complications and affords the best quality of life. That is our best-case scenario. There are other forms that have more medical issues requiring surgeries, use of a wheelchair throughout life, etc., and there is also one form that is deadly. Please pray that whatever news we receive tomorrow will be as good as it can be.

Y'know, I remember saying back in the early days of this pregnancy that all I wanted was a healthy child.  (And that's true - still, the most important thing is that he is healthy.)  But perhaps I should have been more specific.

I just don't understand. Why...?  How...? I just don't get it.  Exactly 1 year to-the-day later and we're back in the same place wondering again: How can this be our reality?


18 comments:

  1. Oh Chicken that must have been such a shock! I follow your blog and was dumbstruck when I read through your update. I don't want to say I'm sorry because I work with children with disabilities and would never want to say that they are something to be sorry for. Having said that I can only imagine the grief you will feel with having yet another significant life change and a baby that may have a life different than what you had in mind. There are so, so many people with dwarfism who have wonderful lives and do amazing things. I'm sure it's a lot to process so I am sending my thoughts and love from many miles away xoxo

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    1. Thank you for this - it really helps! <3

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  2. I also don't want to say I'm sorry but I am praying for the best possible outcome.

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  3. I hate that you're going through this. I'm sorry thst you're facing uncertainty about the health of your sweet boy. I hope you get the best possible news tomorrow. Thinking of you, S, and your sweet Rainbow <3

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  4. Praying for you and your rainbow. I pray that the results give you the best possible news. Take it just a moment at a time

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  5. I hate that you have been blindsided yet again. I pray that of all possibilities, your baby will be the healthiest of those options.

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  6. Thinking of you guys <3 <3 <3

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  7. Chickie I can't believe you are in this place again. My heart sank as I read your post. I wanted more than anything that there wouldn't be any health concerns with Rainbow. I am praying that Rainbow's diagnosis is the best form possible. Sending you big prayers and hugs.

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  8. I'm so sorry that you were blindsided by this news - especially so late in the game. Please keep us updated and let us know how we can support you through this. I'm hoping for the best possible diagnosis and that you'll still get your healthy Rainbow baby. Hugs!

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  9. This news, at any time, would be hard to hear, but to have it fall near an anniversary for Petey just makes it that much harder. Sending hugs to you all.

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  10. Oh gosh.. I'm so sorry you've received this sucker punch, especially on such a day as the one-year anniversary of receiving Petey's news...
    Sending thoughts&prayers as you and your husband proceed through the next few days (and weeks, months, years)

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  11. Oh sweetie I am so sorry. I will be praying for you today and hoping that he has achondroplasia and is healthy and has to go through as little as possible. I can't imagine what a shock it was hearing that especially at this time. I love you, I am sending you and YH tons of hugs and I'll be thinking of you all day today.

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  12. I am so sorry... I can only imagine how you feel and it's just not fair that this all couldn't have been easier for both you and baby. I'm praying and crossing my fingers that you get the best news possible. This baby is still such a blessing, and I'll be thinking of you today and as you prepare for delivery. Sending all my love.

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  13. I read this post in the morning but didn't have time to comment. I've been thinking of you all day and hoping that you get the best news possible today. I'm so sorry that after all you've been through you've received another sucker punch, and right around an already difficult day with your the anniversary. It just doesn't seem fair, but I know from experience that life isn't fair. Wishing so hard that it is the common form and that he can live a healthy happy life. Hugs.

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  14. I am so sorry--thinking of you as you hopefully prepare to hear best case scenario out of this unfortunate turn of events. I'm also sending out a few extra kicks and punches into the universe that you are, yet again, not getting the "perfect" news you expected to hear.

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  15. I am so sorry to ready of your news. I know you are still processing and wish you the strength and perseverance to get through this new hurdle. You can do this and do it well. Your child will be forever grateful for your ability to adapt and raise someone different than you expected, but just as wonderful.

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  16. I have not been logging in and checking my blogs, so I just saw this! The good news is that you will meet your son very soon. I hope for the best possible outcome.

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