Tuesday, 3 June 2014

Not out of the woods (or the hospital, as it happens...)

After several days in which she did so well she surprised her care team, Girl Wonder has been (re)hospitalized for sudden, rapid weight loss, low temperature and suspected now confirmed sepsis. She's being given an aggressive course of antibiotics, put under heaters, and we're supplementing my breast milk with high calorie formula.

When the doctors mentioned meningitis (though probably unlikely), I finally lost my shit once and for all.

My resilience and reserves of energy are at their lowest ebb yet. We've had to be so strong through one blow after another. Girl Wonder has had to be so strong. Why does this shit keep happening to us? I'm so so scared and can't stop crying. Infection in a pre-term infant (let alone one with all her complications) can be life-threatening. I just want her to have the chance to be a happy baby already. Our hopes are so simple, yet so seemingly unachievable. I can't help but feel we failed her somehow.

I'm confused and afraid and sleepless, not because of the poopy diapers and late night feeds and colic that are supposed to be the cause.

How we're even putting one foot in front of the other I have no idea, except, I suppose, for her. H said it best today, after we watched in awe as she endured a painful spinal tap procedure with no fuss and was all smiles 10 minutes later: at less than six weeks of life, Girl Wonder is the most impressive, inspiring human being we have ever met.

30 comments:

  1. Oh, how scary this must be! I'm sorry you and your sweet baby girl have to go through this. I just read your last post, and wow, what a strong little girl she is! You are lucky to have each other, and I'm sure your presence is a comfort and strength to her right now. I'll be thinking of you and hoping she gets well soon. xo

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  2. What an amazing girl you have! I'm in awe of her strength, your strength, your families strength. Praying for you always. XOXO

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  3. Immediately sending prayers your way and hope things are resolving- all good energy to that Girl Wonder, know you are being held in my heart

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  4. Sadie, you, H and Girl Wonder are in my thoughts and prayers. Every bit of hope I have I am sending your way. In the meantime, put all your fears and worries here. We can help you carry this burden and will support you as you battle your way through. You are not alone in this, I promise.

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  5. You are all in my thoughts. I'm so sorry that this is happening, that you keep having to find resolve and strength. Sending you hugs!

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  6. You have not failed your hopeful little wonder girl one bit. Honestly, just as she is the most inspiring human you've ever met, you are one of the most bad-ass lovely mothers I've ever "met." You are being there for her so hard and I know it is making a difference. You have this whole team of us out here rooting for you and the wonder babe.

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  7. Keeping you in my thoughts. I hope to hear good news very soon.

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  8. How scary :( Hoping so much she gets well soon, and so sorry you're going through this (hugs)

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  9. This is so scary. I am hoping and praying that she'll get well very soon.

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  10. She is inspiring! But so are you!! You have been through so much - it is only human to have a meltdown. Thinking of you and sending love to baby girl!!!

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  11. I'm so sorry you guys are facing yet another scary, uncertain situation. Sending all kinds of positive thoughts for strength and healing to the three of you, and especially to your girl wonder.

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  12. oh, Sadie...i don't know what to say other than i am thinking about you and H. and especially Girl Wonder and sending you all love and positive energy. keep fighting, little girl.

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  13. So sorry to hear Girl Wonder is sick - sending you lots of positive energy and strength.

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  14. I am so sorry this is happening. Thinking of you and keeping Girl wonder in my thoughts.

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  15. Prayers coming your way! It must be so scary, but she's already proven herself a fighter... sounds like that's what she'll continue to do (with a smile on her face, no less).

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  16. sending you strength! c'mon Girl Wonder, you can pull through this!

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  17. Readmission after discharge was by far much harder for us than it was when my boys were in the NICU. We thought we had made it past all of the hospitalization, so it was an incredible blow to have to go back. It made us feel like we failed, too. We didn't fail our boys. Sadie, you did not fail your girl either. You are doing the hardest thing to do, and you are doing it with grace and love. It's okay to cry and lose your shit--it doesn't make you weak or anything else to lose your shit. It makes you human. If you ask me, I think it makes you stronger because you allow yourself to feel what you feel. Girl Wonder comes by her strength and resiliency naturally. She gets them from you and her dad.

    Many hugs.

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  18. I'm so sorry you have to - but you can do this. You are strong and Girl Wonder is strong. Thinking of you and sending you strength!

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  19. Hi there, I found your blog through a commenter on my own blog. I also have a daughter with Down Syndrome who is now 3 months old. I completely understand the ups and downs during the NICU phase. One moment she's fine and next thing you know, there's a new symptom for something bad.

    I also understand about getting knocked down by life's events over and over, one bad thing after another. What's helped me is the support online. So by connecting, I hope maybe we can support each other through our difficult journeys.

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  20. Your paragraph about her is so lovely. It makes it ever more heartbreaking to hear that she has to go through more procedures, more pain. Sending much love to you and Girl Wonder.

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  21. Goodness, Sadie. It keeps coming, doesn't it? The ebbs and flows are unfair and unimaginable. Our situation was so different from yours, but I can absolutely relate to joy over small and large hurdles being quickly followed by sitting on the floor, leaning against the refrigerator, and sobbing about the unfairness of a life begun with pain and sickness.

    We are out of the woods now, but we will still have to wait and see if there are lasting developmental deficits and we have at least one surgery on the near horizon.

    I'm thinking of you and Girl Wonder. Thinking of you with gusto. Sepsis is very, very scary. Please know that you have lots of love coming your way.

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  22. Sending you, Girl Wonder and H much love and light. Hopefully the big guns antibiotics will help her heal, and as everyone has said, she's a fighter, and hopefully she will keep fighting. Thank goodness for your diligence in keeping her safe by rechecking weight and taking her back to hospital when she needed it. You are doing an excellent job of taking care of and cherishing the little soul that you've been blessed with. Keep it up; we're all cheering, praying and hoping for all of you.

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  23. That Girl Wonder will continue to amaze. What a fighter. Sending you virtual hugs and strength. Thinking of you, and her.

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  24. Still sending prayers without ending; hoping there have been some stable moments and you have been able to at least briefly rest body and soul

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  25. It's been a few days since you posted this and I hope Girl Wonder is continuing to improve. She is a figher. Thinking of you and hoping you get a break from the bad stuff very soon and you get a chance to just enjoy your baby girl.

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  26. wondering how Girl Wonder is doing? Thoughts and prayers with you

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  27. Thinking of you and sending strength and love. I hope baby girl is on the right track now and is more stable. I'm so sorry you have to go through this. I hope with all my heart that you are back home by now, recovering and finding your own routines as a family. Hugs xx

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  28. I'm so sorry you're going through this! I'm hoping and praying that your beautiful Wonder is doing better... I'm thinking of the whole family!
    Mira

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  29. Firstly I'm just At a loss for what to say, at the same time I know words won't suddenly fix this. I hope with all my might that you turn a corner today, step into the sunshine and can get the chance to enjoy your baby, a chance that you all so deserve. I've been off blogs for a while now as dealing with my own second baby pregnancy and it sure is a battle. Thinking of you and sending bucket loads of positive energy your way. We are all willing you in to better brighter days. Sally Nash xxxx

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