Sunday, November 3, 2013

Best possible outcome?

I know that this baby has dwarfism and I am completely fine with that. It's funny that now that I have Maddy, my concerns about the long-term future of this baby are minimal. Most of my worries are the immediate, and a lot have to do with NICU. 

If we could have the best possible outcome from here (in the short-term):
  1. the baby would turn and I'd have no need for a cesarean (I really don't like the sound of the recovery from that!)
  2. when she is born, we'll find that she has no cleft palate and can breastfeed so I don't have to think about pumping again.
  3. her breathing would be efficient and regular, needing no assistance such as CPAP or oxygen.
  4. I'd be able to bring her home from the hospital with me.

What is the likelihood of the above?
  1. Possible - but I'm not really holding my breath for it... Some babies, even with DD, can turn as late as right before delivery. It is rare though - but not impossible. 
  2. I think of the above, this is the least likely. We haven't been able to see a cleft on the ultrasound, but we never saw Maddy's either. Cleft palate often goes along with a small jaw and restricted airways - and we already know she has a small jaw.
  3. I think this is possible - Maddy really needed minimal assistance, and I'm pretty sure that this daughter has a larger rib cage than Maddy did - so... fingers crossed!
  4. At times, this seems like a far off dream - I go between trying not to get my hopes up too much, and reminding myself that I need to prepare to come home alone again. 
Please keep praying for us as we wind down to the end of this pregnancy - there are a million emotions going through our minds at the moment. In some ways, having been there before makes it easier - it's not our first time at the rodeo! In other ways, we are not fresh this time around, we are a bit more battered, a bit more scarred - bluntly, I didn't agree with the way Maddy was treated in NICU back then and I don't want to go there again. Maybe I'm bitter, maybe I just plain don't trust the system so much. I'm sure if I'd had a chronically ill baby who needed high tech medical care, I'd be thankful. But I'm not - I'm resentful. And the closer we get to being there again, the more I see my own negative feelings and emotions about Maddy's experience...

6 comments:

  1. Praying for you! I know that Kenny's birth dredged up some things that I thought I had dealt with, so I think you will have some of that leftover ickiness from your bad hospital experience with Maddy. but sometimes knowing those emotions are coming really helps.

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    1. I'm so happy to hear from you, you are often on my mind and I'm still reading your blog and praying for your family too. xox

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  2. We will be praying expectantly for all 4 to come true my friend!! We will have 4 littles and each day is a blessing

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  3. Nicole...You are positive thinker and a great mom. I am always excited to read your writing. Keep in writing. I will always support U. I can't wait to see your next princess.Of course she is cute like her sisters.
    I will pray for you and your baby. Hopefully your baby will not face any problem and everything is as your expect. I know you are ready mentally and physically for it. So don't worry too much. Sometimes we do not have to think beyond our ability,we have to trust in God. God's plan is a great plan. You are choose to face it. I'am sure you are special. For my religious views .. what God planned there is a reason and worth it...all to the benefit of us or someone else. May you have the strength and patience to face it.

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  4. I can't imagine dealing with all of this- past and present. I'm sorry you have to deal with this ugly side of the medical world.
    My husband was my warrior at the hospital. If he didn't feel something was necessary- he refused. I don't know the laws, here in the US or there in Hong Kong, so I don't know if that advice is practical. But I was surprised to find that just because something is procedure, doesn't mean you have to agree with it. I have a hard time being contrary or argumentative, but my husband has no problem with that, especially when it involves poking our newborn baby every 4 hours for 24 hours to check her blood sugar because her temperature was a little high when she arrived to the nursery. He refused. The doctor the next morning said he made the right decision and sent us home.
    The nurses have a way of pressuring you and making you feel like you have no choice, but I surprised to find you do have a choice. If you don't feel comfortable with something, refuse it! Adamantly!
    I am grateful for the medical world, I am. And I told the nurse who my husband was butting heads with I was grateful for her trying her best to take care of our daughter in the way she saw was best, even though we didn't agree.
    Sorry this comment is so long. I will keep you in my prayers and I hope everything goes smoothly for you and new baby.

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  5. Dear Nicole,

    I agree with Chelsy above. I have also refused medical treatment and tests required by the doctor for my child in the past - here in Hong Kong. It can be done and often is the right thing to do. With your experience and all you have read and studied, you and your husband are Hong Kong's leading experts on this situation.

    Once the two of you agree on what you want, when you are peace with that and confident, you can make it happen.

    Wish you much peace and the strength to do what you know is right.

    Evelyne

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