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.
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.