Our New Normal

Our lives were pretty much flipped around.  I use to always thank God for how good we had it.  Eric and I both have good jobs, our cars were paid for, we lived in a nice neighborhood, our precious Kierstin was smart, healthy and happy.  We had it so good.  Really, I don't think people appreciate things like this and take it for granted.  I didn't, I thanked God every chance I had for how much he blessed our family and knew it could always change in a heartbeat.  To tell you the truth, I was a bit mad at God during this time.  I thought maybe I was being punished our he hated me.  I know, I know....what a drama queen!  God was still with me, my baby was alive, he was beautiful, he was so sweet and loved.  God likes to challenge us and he knew Eric, Kierstin and I were strong enough to take on a challenge.  Preston is in no way a punishment he is just the opposite and I feel awful for ever thinking that.  Don't worry I got over that feeling, but to be honest, it took me a few weeks.

There were people in the NICU who would never take home their babies, mothers who could not hold their babies, not even kiss them.  Now that is sad.  I knew I needed to get over my little pitty party.  I met a lot of super nice people while I was in Buffalo.  Some of the staff are outstanding, and other mothers and I bonded.  Preston even has a couple of friends as a result like Hunter and Corwin who were both premies.  Preston was the big one because he was over 6 lbs!  Hunter's mother Emily, who was also staying at the Ronald McDonald House, had been there since February, laying flat in bed for about 3 weeks trying to keep Hunter from coming out and then by his bed every day after his birth on February 16th.  He was about 5 weeks older than Preston.  At birth Hunter just weighed 1 lb 7oz, her husband's wedding ring fit right around his tiny leg.  When Emily and I first met she was not even able to hold him, yet for hours she would sit by his bedside talking to him and monitoring his progress.  She was his own personal nurse.  Her husband, Chris would come on weekends to be with his family.  Many stories like this one, every one of us dreaming of the day we can take our babies home.

We were in a routine every morning I would get up pump milk, get ready, go to the hospital, drop off the milk (I felt like I was working for a dairy), then go hold my sweet boy before it was time to pump yet again.  Different groups of Doctors would come through and tell you any progress throughout the day.  Nothing seemed to be going smoothly though finally after weeks and weeks and about 12 IV's in his poor little body they decided that he may have something called Hirschsprung's Disease.  Of course then they decide to give me no information about this and tell me we just have to wait and see if that is the case and performa a biopsy on his colon to see.  Information at this particular hospital was horrid!  Such a disconnect between different departments and groups of doctors!  Anyhow, so I googled it and learned that basically part of his colon was lacking cells that cause it to relax so he can pass gas and have a bowl movement.  Causing severe discomfort and constipation.  So after a few days they decide that they want to biopsy him because they think he has this and then a few days after that they actually do the biopsy which he had to go into the OR for.  That was a Saturday and we did not get the results back until Wednesday.  

You would think we were due to catch a break, right?  Well you would be wrong!  He had it!  Common with Downs Syndrome but having both that and the Duodenal Atresia is not common.  Yay us!  Of course that was not good on my tiltering faith.  At that time, the Surgeron who was seeing him who had an ego on him the size of Texas was off and a female Surgeon who we were not familiar with came to deliver this news.  She seemed to have a more proactive approach and recommended that since he was still too small to do the surgery to correct this which is on average 6 hours long, that we consider getting a colostomy bag so we can get him home faster.  I think all I heard was HOME!  She said she could do it on Saturday and it was a 3 hour surgery.  Not a fan of going to the OR for a 3rd time, but a big fan of doing something to get him home!  The last surgeon just kept wanting us to wait wait wait.  He even said if this test came back positive we would wait a while and then decide what to do.  I don't like waiting.  Eric, the Neonentologist team we were working with, the Surgeon and I all discussed and decided this was best and probably going to end up happening anyway. 

So we waited until Saturday....getting good at this waiting thing...and prepared to send him off into Surgery yet again.