April 24, 2011

london claire.

i am coming out of what was, arguably, the longest 12 days of my life.

over the past 2-3 months, our little ladybird, london, has not been feeling great. her appetite has been touchy, she has had waves of fussiness, and her coloring has gradually become more and more pale. over the past few weeks though, she has been almost constantly pale and clingy.

at her 15 month check -up i shared all these concerns with the doctor. these symptoms (combined with the fact that her growth had been slowing for some time, and now had dropped off significantly) caused our pediatrician enough concern to send me right to a lab for a very comprehensive list of tests, including 7 viles of blood and a chest x-ray. when they strapped her tiny body down to the table to run the tests... i thought that this would be the worst part of my day.

sadly, i could not have been more wrong.

almost as soon as i walked in the door, my pediatrician called saying that some of london's blood work had already come back and that we needed to take her to the emergency room at the children's hospital immediately.

after multiple tests and more blood... the doctors determined that london had stopped making red blood cells and was severely anemic. (most anemia is caused by iron-deficiency and is easily corrected.) however, in london's case, she was simply not even making red blood cells any longer. her blood count had dropped to a dangerously low level (less than 40% of what it should be) causing her heart to work overtime to circulate the oxygen she needs throughout her body. in addition to that, the overworking heart may have caused fluid in her lungs, or she has pneumonia... but that that piece has yet to be determined.

the hematologist explained that without treatment, london's heart could eventually "wear out" causing heart failure from constantly pumping such a small amount of red blood cells throughout her body. he recommended she have two blood transfusions. we stayed overnight at the hospital, and it took a total of 7 hours to get that much blood into her little veins.

after arriving home, london was pink, energized and had a great appetite! we were so excited to see her in her usual form again. unfortunately, she started throwing up that evening and 12 days of explosive diapers have followed. the grand crescendo of diarrhea was today upon arriving at church, wearing our easter best, when suddenly i realized that london and i were both covered and we were still in the parking lot.

it has been an exhausting (almost) two weeks. she is still eating very little, is constantly feeling sick, and is continuing to slowly lose weight. we will continue to check her blood count on friday, then again in 2 weeks. the plan at this point is to continue working with the pediatricians and the hematologist, as we also consult with an endocrinologist, a gastroenterologist and a geneticist in an attempt to fit together the many seemingly unrelated symptoms (poor growth, inability to make red blood cells, and change in demeanor and appetite, and now the continual diarrhea.)

in another month, if she is still not making red blood cells on her own, we will likely do a bone marrow biopsy to get a better look at what is actually going on in there. if no red cell production in two months time, we will have to do another round of blood transfusions.

i have vacillated between extreme gratitude that our kids have been healthy all this time, and that london is strong and feisty and is so resilient... and feeling sheer terror that they will never know what is wrong and can't fix it, or that we will figure out what's wrong... and still can't fix it. i so badly want to be one of those people you see on tv in a news interview that have lost their whole family in a car accident and they still praise the lord and say "it is well with my soul." i want to be like that. but, i don't think i am.

i feel like i am in a dream where i am being chased, only i can't run fast... i can only be slow, and lead-legged, and pathetic and useless. and i want it all to be "well with my soul," but i secretly fear that instead of being like those well-souled people... i'm more like those people that turn to street drugs when the going gets rough.

please do not feel free to share about the dangers of street drugs, or how as a christian i should/should not be doing something. i am surviving. i am usually nose deep in my kid's pants, checking to see if i need to change diaper #46 for the day. i am lead-legged. and i am not doing street drugs. unless you can give me a serious shout-out for that, just maybe judge me silently this one time. fair?

in the meantime, i am trying to believe God for my sweet baby's life. and for mine.

8 comments:

  1. Lara, I'm with you on this one. "well with my soul" seems like such complete bull when life happens like this. Sometimes the things you want to hear least is "you just need to keep praying" and " read such and such a passage". Sometimes what you really need is an "I love you and this really sucks for you." mere acknowledgment of what you're going through. I have no more to say other than I love you and your family, and im sorry for all of this and the uncertainty. I believe everything will be illimunated eventually. Enjoy your family this Easter. Keep trying to believe God. I'm hoping trying will be enough for both of us in our respective situations.
    -s pilger

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  2. no but seriously. go you. you seem like such a strong woman. and a strong christian and a strong mother and a strong wife. everything will turn out like it's supposed to and it will be well with your soul.

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  3. Lara, I am so sorry you've been going through this. I am praying for London's health and for all of you during this; I pray God will be able to give you some measure of peace.

    If you need ANYTHING, please don't hesitate to call me; I have a feeling I live pretty close to you and can be over in a wink to do whatever.

    love,
    Erin

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  4. Lara, thanks for this update, hard as I'm sure it was to write. Prayers are going up for you, your family, and especially your sweet London.

    May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.

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  5. Good to see an update on all this! :( I'm so sorry! Will be praying for you tonight with the girls! Somethings gotta turn....and when you don't have the strength to pray, to cry out, or even to have hope for change.....your friends and family are there to hold your arms and gives wings in prayer. Sometimes you just need others to believe for you, because as your going through everything, and immersed in the middle of it all, you are more than deserving to just be you....even if it means it isn't well with your soul. Like any mother, I'm sure you would take London's place if you could. You would lay your life down for her. I think at this point you have a right to be at odds with the unexplained questions, finding the strength to trust God. It is good to know that despite how we feel, it doesn't change the character and faithfulness of God.....and that simply what matters. You are doing wonderful Lara! Sometimes being weak is actually being strong. Continue to let us know how we can support and pray for you. Love you sweets!

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  6. Thanks for the full update... text messages were just not cutting it for all this drama. Glad to know everyone is home at the moment, and we hope that it stays that way. Love to everyone from the SW. Keep us posted if you are up to it.

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  7. My heart is heavy for you. It has been ages since I have had a chance to catch up on my blog friends, very busy days, then I pop on today to read this. I am sad for Little London, and her mommy & family too. No preaching on drugs and your choices or behaviors over here, (wink), just praying for you as you take each breath, each step. It is clear what a wonderful mommy you are. Blessings.

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  8. lara, i will weep with you as you weep and rejoice with you as you rejoice...and pray for you and your precious family fervently. thanks for sharing your heart. corri

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