Truly--Part 8

    I would be remiss if I did not tell you about the excellent care that Truly was receiving.  The first time I was able to go see her, the attending nurse told me about everything that was connected to her and how it was helping her.  Every monitor and device had a purpose, and I was able to learn what everything was for. Every nurse was extremely confident in what he/she was doing.  I could tell from the way that they cared for her with such delicacy, yet such experience. They told  me that she was rather feisty and didn't like certain things that they did.  If she was "bothered" she would kick her legs defiantly! We were also very confident in the team of doctors in the NICU. From the first day that they knew what it was, they referred to her by name. She was never called "the baby" or "your daughter", to them she was always Truly. They had a consultation every morning among all the doctors that were caring for her and they let Stephen and I be a part of it.  Nothing was hidden or kept from us. We knew all that was going on. Before every test and scan we were informed of what the purpose was and afterwards what the results were. 
 

     One of our favorite memories of Truly happened after one such test.  We walked into her room one evening and noticed something different--quiet.  They had put her on a different respirator so she could be moved for one of her scans and they had not put her back on the "Model T" yet.  We went to our usual spot near her and talk to her and spend some time with her.  She was much more active that evening.  Her eyes were moving behind her eyelids and she seemed to know we were there.  It was getting very late and we had to return to my room so Stephen said "Well, Truly, we need to go to bed. We're tired. Goodnight, sweetheart". At that moment, as if on cue, Truly yawned.  What a precious memory!
     The doctors over my care had graciously moved me from my room in the surgery recovery wing over to the OB wing so I could be just around the corner from Truly.  It had a double bed so that Stephen could sleep better (chairs are not too comfortable!).  I have such precious memories of those few days we had together talking a laughing and spending time with Truly.
      By now, I was getting stronger by the day.  I was eating normal food and had actually taken a shower (heavenly!).  By Wednesday evening, all of my "tubes" had been removed.  The head nurse came in to tell me that they were supposed to discharge me that evening.  However, there was an extreme ice storm going on outside.  The "hotel" in the hospital (for families of long term patients) was full and the conditions outside were deadly, so she informed me that I was officially discharged, but they would let us stay in the room that night so we had somewhere to sleep. The next morning, we inquired  if there were any rooms available in the hotel and there was one available.  What a great service to those who need it.  It was only $15/night and just as nice as any Holiday Inn we had ever stayed in.  Stephen's mom and dad decided to stay with us.  We were to have a consultation with another doctor and we had some decisions to make concerning Truly.  A surgeon met with us and told us about an exploratory surgery that they could try. Basically, after doing several tests, they concluded that there really were no intestines in her body. The exploratory surgery would just confirm that. The surgeon made it very clear that the chances of her even surviving the surgery were very slim.  Some other problems had arisen.  The feeding tube that was sustaining her could usually be kept in for months, but where hers was, her leg was beginning to swell with some sort of infection. Her skin seemed to have taken on somewhat of a yellowish tint.  I knew in my heart that she was failing.
     We went out to eat that evening and it was like I had been given a new lease on life.  The trees were covered with ice from the storm and it was the most beautiful thing I had ever seen.  The Christmas lights seemed dim in comparison to the light reflected in the trees. As we were eating, we got a few stares.  I had packed an open necked shirt in my bag in preparation.  As mentioned before, I had huge purple and black bruises on my neck and shoulder.  People looked compassionately at me, but stared daggers at Stephen!  We also went shopping and got some other clothes to get us through the next few days.  I also picked out a pretty pink blanket for Truly.
        I had, in the past, always had a skeptic outlook on doctor's decisions.  I knew (and still know) that there are doctors out there who just prescribe medicines and treatments to cover up symptoms, instead of treating the actual source of the problem.  The Lord knows me so well.  He took care of my doubts in a very special way.  My parents live in Wisconsin.  On one particular evening, they were watching the 10 p.m. news and at the end of the broadcast, the new reporter told a story about some doctors from the University of Iowa Hospital NICU team.  The night of the deadly ice storm, these doctors heard about a preemie that had been born a few hours away, but because of the storm could not be moved. These doctors risked their lives to go to the other hospital to give that baby the care he needed.  It wasn't just by chance that the Milwaukee station aired that story.  My dad called me the next day and told me about the story and said "Jenn, you can trust these doctors." My Lord knew I needed to hear those words.  I still weep when I think of how good God is in doing that just for me.
      As we went to bed that night, our hearts were heavy.  The words were not spoken, but we knew that Truly's time was near.  It was up to us to decide how that would be. It was quite a burden to think that we had to  make that decision in the morning when we met with the doctors again.