Saturday, December 31, 2011

Our Crazy Life!

Oh my, December has definitely not been boring in our house!  Let's start with the good stuff - Alle is continuing to thrive and our little chunk:) is growing more every day!  She is starting to babble a lot more, and is getting so much more comfortable not having me in the same room as she is every minute! (most minutes she still prefers to be held, but there are times when she is happily playing with her toys in a different room!).  The boys have had a great vacation from school for the last week - we spent the week in Richmond with my family, celebrating birthdays and Christmas and just loving being together!  And Hannah - where to start?  Our precious little one has definitely had more than her share in her 4 short years of life with her juvenile rheumatoid arthritis.  We are so thankful that she continues to be in remission and we pray that it stays that way!  BUT, for the last 6+ months she has been complaining that her "side" hurt.  First we thought that she was anxious about Alle coming home, then maybe her arthritis had spread into her hip, then maybe she had a stomach virus, then maybe she was constipated, then perhaps it was a convenient excuse to not eat her supper.  It was never bad enough that she was screaming in agony, just an on and off "my side is hurting - can I lay on the couch?"  I mentioned it to the doctor multiple times and she thought the same thing that I did - gas pains, etc.  Then, about 2 months ago, she started throwing up.  Once a week, in the morning, after moaning and groaning all night.  and then she was fine.  so again - the stomach bug?  I was a clorox wipe fiend.  But, no one else ever got it.  Ever.  But every week - she threw up once in the morning and then nothing.  After 7 weeks of this, my momma/nurse radar was going off.  She did not have a fever, no other symptoms, but something was not right.  So I called the doctor, again, last Thursday.  What should I do?  I think that there is something wrong but when I verbalize what is going on, I know that I sound completely crazy.  They did not know what to do, but just in case they suggested that I take her to the ER, because they had nothing.  So, off we went to the er, last thursday.  Now, I am a nurse, and if some neurotic mother told me what I told that ER nurse, I probably would have struggled to keep a straight face, and then as soon as I was out of the room I would have burst into laughter and told all my coworkers about the whack job that was in room 11.  Anyways, the nurse pretty much told me that she thought Hannah was "anxious about her schedule" and was "throwing up because of anxiety".  Okay.  and then the doctor decided that "she has esophageal reflux".  Really?  because the pain is in her side!  and so I harped, and bugged, and they finally ordered an abdominal ultrasound and then were going to discharge us.  But, the ultrasound, and the following CT scan, showed severe left hydronephrosis.  Basically,  they believe that she has a congenital condition were her ureter (the tube connecting the kidney to the bladder) is overlapped at the top with another vessel (usually all the vessels just hand out side by side:).  As she grew, the other vessel has caused an obstruction, which in turn is not allowing urine to flow through the ureter to the bladder.  In short, her kidney is huge, and dying.  If left alone, she would lose all kidney function in her left kidney.  Her right kidney has been compensating superbly, and so far, while she has permanent kidney damage, she will most likely return to adequate function once the problem is taken care of.  So, after a few more tests (not so much fun with IV's and catheters), her pediatric nephrologist will go in with a robot and cut out the obstructed area, and reattach the ureter to the kidney.  they will place a stent (a temporary tube for the urine to flow through until the ureter is healed).  She will be in surgery for several hours, and then in the hospital for about 3 days after.  Fun times, I tell you, fun times.  This is something that is usually caught at birth, and if it does not resolve spontaneously (which in many cases it does - Noah had it in-utero and it resolve three months after birth), the child has surgery before the age of three to prevent permanent kidney damage.  Unfortunately, we had no idea, and are just catching it now.  Thankfully, our ped. nephrologist is one of the best in the country, and hopefully this will all be behind us in a couple of weeks.  Never boring in our house!
Okay - are you still there?:)  Sorry for the long post - I have had so many wonderful friends and family ask about exactly what was happening, and thought that it would be best to try to explain it here!  We are anticipating surgery in the next few weeks, and we covet your prayers and support as we support our precious Hannah.
Okay - I leave you with some pics of my girls that I snapped at the beginning of the month. Hopefully I will be able to take some of all my monkeys on monday - they are growing so fast, I just want to freeze time!
Have a blessed New Year!!!