Monday, July 15, 2013

MEET EZRA: ROUGH WEEK


It's been a while since I've written an update. We're exhausted. This past week was another crazy week...it involved a trip to the ER Wednesday where we spent most of the night, 2 rounds of ultrasounds, one on Thursday, one on Saturday, a doctor's visit, another trip back to the hospital for unplanned blood work, and many sleepless nights. The craziness with our sweet boy seems to come in waves (which are exactly the words I uttered to our pediatrician during about the 100th conversation we had with him last week). Long story short, Ezra puked a lot throughout the week, he came down with croup and was having labored breathing (or so we thought, chest ultrasounds were clear), the blood in his stool has continued for about 8 weeks straight despite my diet changes, there was some blood in his urine (that thankfully seems to have cleared up), and his spleen may be enlarged again. Kind of a million different things but likely all related (minus the croup, I guess).

There are some other things going on as far as Ezra's diet is concerned that are too hard for me to talk about right now...but what the heck, maybe writing about it will help. It involves me pumping in every spare moment I have and $50/can prescription formula. With a healthy child there might have been more we could have done to avoid this horribly drastic route, but given all of Ezra's blood issues, we cannot afford to let his gut continue to bleed. We have to see if we can heal his gut with this purely amino acid based formula (and to see what kind of effect, if any, it has on his cell counts) since my elimination diet appears to have had no effect. The hope is that I can pump in the meantime and reintroduce breast milk again when he is healthy, but that all depends on me being able to keep up my supply by pumping and him being able to switch back when the time comes. I can't even begin to describe how agonizing these doctor's orders (from the GI specialist) have been for us and how many tears I've cried. I think breastfeeding is the most wonderful, amazing, perfect food for a baby...the most wonderful, amazing, perfect way to bond with your baby...so to have this stripped away from both of us breaks my heart. I can't really even put it into words. But, at the end of the day, the formula should definitively tell us whether or not Ezra's GI bleed is allergy related, or apart of a larger problem pertaining to his other medical issues.


Anyway, with everything he's been through, Ezra continues to be such a sweet, sweet easygoing baby. He is such a blessing to our family and we love him so much! We now await the latest abdomen ultrasound results and we continue to wait for the WAS test results - depending on those results we'll have to start thinking about our next step in finding someone who can diagnose and treat him. Judah turns THREE on Friday so we are hoping and praying that this week is MUCH less eventful and that everyone is healthy for party time :)

Thank you for your continued love and support. Please keep praying for help and answers for our sweet boy!

PS - I'm still working on thank-yous :)

PPS - If breastfeeding didn't work out for you, I'm not judging...if anything, I now know how to empathize with you.



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