*Noah is 4 weeks, 1 day old.*
poor baby noah. it is just one thing after another with him. just like his mommy, he seems to have a lot of medical issues...
i took noah to the pediatrician yesterday for his follow up bloodwork to re-check his hemoglobin level. they gave me an order for additional bloodwork every week through the end of the year to get done at the lab at central dupage hospital. the ped called later and said the hemoglobin was 7.8 - down from 8.7 last week, but he didn't seem too concerned. he told me he'd forward the results to the hematologist and they'd follow up.
so the hematologist called me this morning and told me that he's concerned that the hemoglobin dropped so much in one week and that the decrease in the number of red blood cells oxygenating noah's body could be putting stress on his heart. he told me he wanted to do a blood transfusion, which was shocking, and even more shocking was that it needed to be scheduled for tomorrow!
i didn't even know what questions to ask. i was so taken aback. they had told us that transfusions were a treatment option for kids with anemia and spherocytosis, but never imagined it would be something we would have to do, much less this soon! noah's only four weeks old!
the hematologist said that even though they can't *officially* diagnose it yet, he's 95% sure that noah has spherocytosis because of the family history, his history of jaundice, and now the anemia.
what sucks is that i've lived with anemia and spherocytosis my entire life, and didn't even know i had the spherocytosis until i was 17 years old! now i have to worry about my baby having a blood transfusion already - it makes me worried that he'll have a more serious battle with the disorder and may need surgery down the road to remove his spleen and/or gall bladder. and worse, i am having immense guilt about it all, because it's hereditary on my side, and therefore my fault he's sick. i know, i know. of course it's not *really* my fault, but i just feel like - i don't know. after IVF and everything, obviously we wouldn't have done anything differently. i guess i'm just frustrated that i wasn't better prepared. i knew this disorder was hereditary, but i didn't realize it would be a 50% chance i'd pass it on, and i guess i didn't really know the implications because i've never really had any major problems with it.
anyways, PLEASE keep us in your thoughts tomorrow. i'm sure everything will be fine, it's just terrifying to think of your baby being so sick. i'm trying not to overanalyze or google too much because it just makes my mind race.
honestly, it's a very surreal experience for me. i have so many memories of my childhood - like up until age 21 or 22 - of regular visits to the, sometimes weekly, to larabida for follow up appointments with the rheumatologist, blood work, ultrasounds, therapy, and even one two week hospitalization for a drug treatment... and when we were at children's last week, it just felt so weird to be on the other side. for so many years i was the kid, and now i'm the mom. it makes my heart ache for my son, but also makes my heart ache for my mom and what she must have gone through with me for all those years. my dad wasn't the most supportive person either, so my mom was usually alone with me (and sometimes my sister) on those trips, which usually lasted all day. so thank god for ben. i can't imagine doing this alone.