NICU Part II

At 2:26pm on May 10^th, Walter went into surgery.  The surgery was expected to go about 2 hours. 

                A few side notes:  About an hour before Walter’s surgery, I was contacted by a case manager for our insurance.  As it turns out, she is now an important part of our lives.  She helps us manage all the insurance and bills, no matter how complicated.  Also, we heard about the hospital’s community care program that helps families with bills. 

                Around 4pm, the surgery nurse let us know that the surgeon was finishing up.  Walter had a bowel blockage known as Marconium Ileus, which was often related to Cystic Fibrosis.  It was pretty clear at this point that our NICU experience was just beginning.  Just recovering from bowel surgery would take some time.  Also, because the blockage had been present throughout Walter’s development in the womb, his bowels would need to mature and develop.  It took us awhile to get to a schedule, but eventually our trips to the NICU became a routine.  Abby and I slept at home at night and spent the day at the NICU.  Walter slept all the day and partied all the night.  But we didn’t know about the night until much later.

                Then, on Saturday May 12^th, things got crazy.  Someone hit our parked car in the hospital parking garage and drove off.  So, I spent the weekend talking to auto insurance and police and hospital security.  

NICU stay part I

Abby asked me to write out some of my notes from Walter’s birth.  The blog has been waiting on my response for awhile, because I didn't get this done.  So I'm going to go part by part.  Here’s what I’ve got:

                One piece of advice I got sometime during Abby’s pregnancy was to prepare a notepad to be included in the labor bag.  We found some cute ones, and I slowly started to fill in the first few pages with some information and some fill in the blanks.  For instance, all the information for check in was on the first page.  That included names and social security numbers, address and phone numbers.  I put the hospital’s number and our physician’s number with all the rest of the info, too.   As it turns out, I needed the notebook to keep track of all the things that happened over the next few weeks.  Here are my notes.

                Abby already wrote about the labor and such, so I’ll skip ahead to the trip to the Neonatal Intensive Care Unit (NICU).

                On the morning of May 9^th, both Abby and Walter were cleared to start getting ready to go.  We were told to pack up at our own pace, and the nurses would get the paperwork ready for checkout.  Walter’s early morning checkup had gone well, although the pediatrician wanted us to stay until he pooped.  We were advised to not worry, there was still lots of time for that.  By 10:40, Walter hadn’t poop, and he had just pit up bile.  We believe God placed the right nurse in the room with us at that time, because she called the on-call doctor to come and have a look.  He ordered an abdomen x-ray.  This was about 39 hours after birth – definitely too long to not have a poop.  The birthing unit nurses tried a few things, but nothing worked.  At 12:20pm, we were told there would be tough news regarding Walter’s intestines.  By 1:15pm we were transitioning from Provena to the Carle Foundation NICU.

                By 2:04 pm we were at the NICU.  Then I got a phone call.  The papers we signed to have Walter moved from Provena to Carle had been lost and the transition team needed permission to move Walter.  In other words, we were at the NICU, but Walter hadn’t made it yet.  We gave permission.

                By 3:05 pm Walter was in the NICU. 

                At 3:20 pm we met with a pediatric surgeon.  Dr. Allen Browne was in town for a couple weeks at Carle.  Normally, he spends his time at the Children’s Hospital of Illinois in Peoria, but he was here this week. 

                In the meantime, I was calling several insurance and dealing with phone calls from various people and groups.  I’m not going to put all those details in here now, because there are way too many.  I’ll just stick to what was going on with Walter.  A quick illustration, just to give context: This was the start of a several weeks where I ignored phone calls from people in my phone’s contact list and answered every unknown number because it could be a nurse or ambulance or insurance, or any other thing.  I later told people that they should feel good when they didn’t get me on the phone, because it meant I knew who they were and could safely ignore them for the time being.

                6:25 pm We discussed using the rooming out room at the NICU, but decided we would be sleeping at home at night. 

                8:00 pm We met the night nurse.  Each day from 7 to 8 am and pm, the nursing staff would change over and spend an hour talking to the next shift about the child each nurse would be assigned.  Over the next few weeks, we would meet many. 

                On the morning of May 10^th, Walter went to have several tests run.  They took about an hour, from 9 am to 10:15 am.  Afterwards, we met with Dr. Browne, who explained a bunch of possibilities but recommended exploratory surgery to determine exactly what was going on.  By this point, none of the flushes or stool loseners or anything else had gotten Walter to poop.  And his belly circumfrance was getting large.  We called the family in and 3 generations of family prayed for Walter and the surgeon.  By this time, Abby and I were fairly well exhausted and running on quick naps only.  We couldn’t stand to sleep much because we never knew who would need to talk to us about any changing plans.