Moving Forward After Multiple Surgeries


When we got back to the hospital on Friday, and we were headed into the weekend.  We were hoping the weekend would be quiet after the big hiccup from the day before. We wanted to be done with surgeries!  I couldn’t handle any more surprises from this little girl!  

Friday’s meant a new ICU consultant, so a new doctor that had to get familiar with your child.  Every morning would start with rounds around 8:30. Rounds would include the ICU doctor, the Nurse Practitioners or Physician Assistants, also known as the “mid-levels,” the Charge Nurse, a Respiratory Technician, a Dietician, a Pharmacist, Cardiology, several Cardiology Fellows and other specialties if you were working with them.  A lot of great minds working together for the best approach.

That morning at rounds, the doctors discussed that they just wanted a quiet day for Adeline.  She needed the rest after the multiple surgeries; her little body was just so tired after what had happened over the week.

The great thing about this Friday was that the ICU Consultant was not by as often to visit as they had been earlier in the week.  It is always a good thing when you are not seeing the ICU Consultant more than once or twice a day.  We knew Adeline was still very much on their radar, but they also knew they had to leave her alone.  

On Friday, one of the single ICU rooms opened, which meant we got to move.  We moved to the room Adeline would call home for the next five months.  No longer would we have to worry about sharing a room with someone, especially an adult.  It was great to move rooms, as the new room had a great view, and we were almost always first on the dock for rounds.  For a planner like myself, it was nice to have some sort of stability in this kind of situation.  

The best thing about this Friday was that Adeline’s sisters came down to visit for the whole weekend.  We were not expecting to be in Rochester for long, but we did not know what was ahead of us either after the hiccup.  It would be nice to have some familiarity with our lives.  The weekend after Adeline’s surgery was Easter.  For us, this would be our first Holiday with Adeline, and we were in the hospital.  We would make the best out of it.  The girls got down to the hospital just before supper, so we headed out for the night after a much-needed quiet day.


Saturday’s plan was more of the same; let’s have a quiet day.  The big goal for the day was to start weaning off the meds so Adeline could wake up more.  If we wanted to get her off the ventilator, she was going to have to be more awake.  Throughout the day, they slowly started backing off on the meds, and Adeline seemed to be doing ok considering all she had been through. 

Rounds were over, and we were setting in for our day with Adeline.  The Pediatric Surgeon and his fellows stopped by to check on Adeline.  After doing a small assessment, they were pleased with how Adeline was doing.  Her incision looked tremendous, and Adeline looked comfortable.  

Saturday was also the first full day of the girls visiting.  When we went to the hospital, we would typically stay there all day with Adeline.  Being in a hospital room all day (obviously) made for such a long day for the girls. It is hard to entertain them and keep them reasonably quiet.  Because of this, it ended up making for a long day for everyone, so we ended up leaving the hospital early that day.  In all fairness, the girls did as well as a three and nine-year-old can do!  Thankfully, the Child Life group had activities that the girls could do.  

A nice, quiet weekend after multiple surgeries

Sunday – Easter

This Easter morning was a little different than the ones in the past.  I usually host my family’s Easter get together, but this year was different.  This year we were in a hotel room, but my parents were going to make the trip down to see us since they had nothing else going on. 

In the morning, when I got up to do my pumping, because yes, I was still doing that, I was sure to leave out some stuff, so the girls knew the Easter Bunny made visits to hotels too. 

Soon, after I started pumping(discreetly), the rest of the hotel room started to wake up.  Of course, the girls had to come and immediately ask if the Easter Bunny had been by to visit.  I pointed them in the direction of the kitchenette, and sure enough, it had! They were so excited!

Before we knew it, we had all gotten ready, ate, and were headed off to the hospital.  Luckily, the hotel is very close to the hospital, just across the street.  Once we got to the hospital, we had been told Adeline had a good night.  We both hoped that today would be the day that they would take out the breathing tube.  We asked the nurse about it shortly after getting to the hospital, she wasn’t sure today would be the day, but we would have to wait and see what the doctors said.

It was finally that time when the doctors came around for their morning rounds.  Sunday morning, the doctors didn’t have a lot to discuss.  Adeline still had a lot of fluid built up, and they were trying to figure out what the best medical “cocktail” would be to help her get rid of it.  They decided they would be aggressive with the diuretics to see what happened.  

The best thing about the day was my parents came down to see Adeline, the girls and us.  It was nice to see them as it gave us some normalcy to something that wasn’t normal.  After we all had a great visit and lunch in the hospital cafeteria, my parents headed out for the day.  

Besides having visitors, Adeline had a pretty quiet Easter.  We had needed some calm days to recoup from the eventful week.  We were now looking ahead at our next few days, hoping that the doctors would start talking about taking the breathing tube out again.  And, once the breathing tube came out, we could discuss going home.


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