She NEEDS Her Lungs

Follow-up post by Karah after our specialist appointment this morning:

Today has been the most devastating day during this entire pregnancy. I am trying to remind myself to be grateful for the little blessings I am able to witness and experience when it comes to Jaxlee, because they will most likely be the only things I will have to hold onto.

Today we got to see our sweet Jaxlee again, and we were told survival after she arrives is highly unlikely. Her fluid levels are not only continuing to rise but she has a large amount of fluid surrounding her heart and lungs and the pressure from this fluid will prevent her lungs from developing completely. She is a very sick baby but her heart is still fighting as hard as ever. Without lung development it will just be a matter of time when the Lord will take her after she is here, if she makes it to delivery.

Jaxlee is only measuring about 17 weeks and 5 days gestation (length wise) which is small considering I am going on my 21st week, but this is normal with Turner Syndrome. I was also curious why I am so much larger this pregnancy than my second, and today I got that answer. The doctor told me I look about 32 weeks pregnant and just as she had predicted the massive amount of fluid surrounding Jaxlee was making her measure 32 weeks – 12 weeks larger than she actually is supposed to be. My heart breaks for her, and my heart is so heavy.

At this point as her levels continue to rise I am looking at having to have a c-section (Cesarean Section) when the time comes to deliver her. My biggest fear all along has been having to go through this pregnancy, delivering her, and dealing with everything that comes with birth and having to leave the hospital without her. Each and every appointment makes this day seem more and more real. I kept telling myself “just get her here and she will be ok.” If she can survive this pregnancy and birth she will be perfect… but without her tiny little lungs functioning properly reality is setting in. God has planned every single part of our being and there is very little our bodies can function without, this is reality. She NEEDS her lungs.

Why is it so easy, so quick to lose hope when you have worked so hard to restore it? I trust God, I trust His power, I trust his ability and I know He is a god of miracles, BUT I also know that not all prayers are answered in the way we believe is best for us. Today I am struggling with selfishness, and questioning God who I know is in control, who has not only the plans for me laid out before Him but the plans for Jaxlee as well, but it is hard to always know it. As the end result becomes more and more clear as to what will come of her life, I don’t know how to prepare myself. I know I need to be prepared, more than I am… more than I thought I was. I have known since the beginning that she only had a 1% chance of survival, but she proved to be a fighter beating the odds that were so clearly set against her. I hung on so tightly to hope, I hung on to her ability to fight and trusted that God was allowing her to fight for a purpose. A purpose that put Jaxlee in my arms and gave her a playful and full life with her sisters who love her so very much. I feel that grip I have on this hope loosening, slipping away against my will. I am allowing the stench of doubt to creep in and it is consuming me much quicker than I would ever have anticipated. I am to the point where I am begging God please…FIX me, remove my doubt, re-restore my hope! I know better, I know your word has proven to be true, and you’re capable of the healing and restoration that I am so desperate for.

This is by far the hardest post I have made. I can not even begin to express the emotions that I am experiencing, I feel like an earthquake has gone off inside of me and I don’t know where to even begin to pick up the pieces. I feel like they are all so out of control I can’t even maintain any kind of emotional normalcy. I know after getting the news we did today I should not be expected to be “normal,” but for the sake of everyone around me, maintaining some sort of “emotional stability” is important to me.

Please, please pray for my family, Jaxlee, and her health. We are forever in debt to those who have reached out to us and prayed for us and over us. We are so very grateful for each and every single one of you. Keep praying because I need those prayers today and now more than I have ever before.

For those inclined to help with the medical and other expenses related to Jaxlee and this pregnancy:  https://www.gofundme.com/babysouza

This is her heart, still beating, surrounded by fluid. The other (featured/top) picture is her abdomen, with edemas swelling her to about twice the side it should be.
This is her heart, still beating, surrounded by fluid. The other (featured/top) picture is her abdomen, with edemas swelling her to about twice the size it should be.

5 thoughts on “She NEEDS Her Lungs

  • June 13, 2016 at 7:40 PM
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    Praying for your rest in the comforting presence of Christ.

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  • June 13, 2016 at 8:15 PM
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    God numbers her days. He is the great physician. Praying for grace for your family.

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  • June 13, 2016 at 8:46 PM
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    So sorry Karah. This is heartbreaking news. Praying for you, Jaxlee, and your family. Your feelings are completly understandable. I hope you can be gentle with yourself.

    Reply
  • July 9, 2016 at 4:33 PM
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    Karah- In situations like this, I always wish there were some magic words I could say that would take away the pain and suffering. But there are not. And that’s by God’s design. Because the glory that comes out of things like this is not the disappearance of the suffering but the goodness of God who carries us through that suffering, who gives us peace in the swirl of fear and chaos, and whose mercy is magnified no matter how things turn out.

    But until you get through to the other side, the pain still stinks, doesn’t it? And for that, my heart grieves with you. I’ve prayed that God will give you peace, comfort, and increased trust in Him during this hard road He’s given you to walk. Blessings and peace to you, sister.

    Reply

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