lil' jojo becomes a Man tomorrow :)

Well, tomorrow Josiah's nuts will finally drop... he will get his plumbing fixed. In addition, he will get an MRI on his head and lumbar spine. I will keep everyone updated on how this surgery goes. We should be home tomorrow night :).

His heart procedure went well. They were able to help his heart a little. Hopefully this will prolong the amount of time before he needs something done again. In fact, by the time he does need something done, new technology may be available enabling the doctors to fix it entirely in the cath lab (basically doing the same procedure he just had... much less invasive than open heart surgery).

I have been very encouraged lately hearing about all the people praying for Josiah and our family. Many individuals praying I have never met. He truly is a miracle baby!!

Here is a little recap of our year... which is not over yet.
Josiah started 2009 off with a bang and was born at 3:59 pm on New Year's day. Not only were we not at home delivering (which is what we originally had planned for Josiah), we were in a different city. Quickly after Josiah's first breath, he turned blue and began his little life by being resuscitated. With many pokes, tubes, wires, x-rays, ultrasounds, etc he spent 2 1/2 months in the hospital. During this time he was transfered to a higher level of care, underwent surgery and received a blood transfusion. Following surgery, he had an incredibly ruff recovery and was on a ventilator for a few days after. At one point, if I am remembering correctly, there were breathing tubes on his nose (I think it was the CPAP machine at that time), a feeding tube out of his mouth, IV's in his feet, a catheter to pee in, and they were putting tylenol up his butt for pain after surgery. They used every hole!! After many trips back and forth between hospital and home, family dinners (sometimes every meal) in the hospital cafeteria, Iylah napping in Josiah's hospital room, Craig spending nights at home with Iylah and me at the hospital with Josiah... we went home. This was not the end of our journey though... with many tubes and still lots of tears Josiah continued to struggle. Back and forth between many doctor appointments I very carefully attempted to carry an oxygen tank, a diaper bag and a car seat with an infant while holding a very patient two year old's hand and tip-toeing over and around those hanging oxygen tubes. Every appointment seemed to end the same... he needs to gain more weight and he may need this or that surgery. We left the hospital feeding him by the tube every feeding around the clock. Day feedings began with attempting to nurse or bottle feed (of course... as you all know he prefers the real thing ;). Most of the time these attempts to feed Josiah ended in more gassy pain and reflux because he was so very uncoordinated while eating and would swallow so much air. He was constantly crying. And there were many times I would pray that God would show me if I needed to bring him back to the hospital. In the mist of all this was my little girl sucking her thumb and holding her "mimi" (her beloved dirt stained fadded pink blanket). One day I wrote in my journal saying "God help me give Iylah the love and attention she needs. She walks aimlessly around the house while I am constantly tending to Josiah". What I now realize is that God was constantly holding her little hand while she watched me with big eyes and a patient heart. As my best friend Melissa said "God new exactly the big sister he made for Josiah way before he was born". This became even more apparent when one day Craig got a call from genetics saying, "Josiah's test results for Noonan syndrome came back positive." One short sentence, but incredibly life changing. Full of divine peace, all of life's puzzle pieces really fit together at that moment. Well God stretched us more... eventually we did get re-emitted into the hospital because Josiah was throwing up and had green stuff left in his tummy after tube feedings ("two episodes of large emeses followed by 20 mL of bilious residual" was the lingo I learned after two months in the hospital that I could quickly tell the on-call pediatrition). Finally, after a few nights of trying to teach the nurses on this different floor what we learned in the NICU we went home again. We continued to struggle with feedings, weight gain, fussiness, those annoying oxygen tubes creating an obstacle course around the house, the many doctor visits.... and the list went on. On one journal entry I wrote, "Well Buddy (Josiah), I love you so very much. I am praying for patience because it seems like you are going to take your precious time with everything. And that is ok. There shouldn't be a rush on life. XOXO ~Mommy". We very very slowly were able to decrease the number of feedings from a tube and the amount of extra oxygen he was getting... until finally no more tubes were needed!!! This was about the time he got glasses. That was hard at first because we had finally began his precious face with out any tubes taped on. But of course we quickly fell in love with his glasses... as everyone that sees him says "I LOVE HIS GLASSES!". After spending much of the summer at home because we didn't want Josiah to get sick or spend a trip out of the house screaming because of being over stimulated we began to venture out and do family things. We went to the zoo, the circus, back to Josiah's home town...the Springs, church, and simple places like Walmart. And now this takes us to his most recent procedure on his heart. This one night spent in the hospital, although sleepless and not even a hint enjoyable, it did show me that we can do this hospital thing again and survive. So for tomorrow we will arrive at the hospital at 5am (don't know why I am still awake... it is 12:08am). They will start with the MRI's followed by his surgery. I cannot believe everything that has happened in 2009... I began the year making resolutions like "more quiet time with God" and now as '09 is two weeks from ending I look back on the number of times I was literally on my hands and knees asking God to show me his face. I guess you could say I kept my resolution. God faithfully continues to show me His face. That is an answer to prayer! For He knows the plans He has for us... plans to give us hope!