May 22nd, 2014- The MRI

'Don't forget to set the alarm for 3 AM.'

Ally's MRI was scheduled for 7:30 AM the next morning.  Since she had to be sedated, she was not allowed to eat for 4 hours prior (and no formula 6 hours prior, so I had to make sure it was not a fortified bottle).  We wanted to make this as painless as possible, so instead of waiting on her we figured it would be easier just to get up at 3 and wake her to eat.  She's never really had a 'schedule' of napping and feedings since leaving the NICU so we didn't want to leave it up to her!

Russell got up with her and fed her, and she did great with it.  Ally had to be at the hospital an hour before she was scheduled, so she didn't have to go too long after that to go without eating.  I needed to be at school for testing, so Russell was the one who took her for the MRI.  I kept my phone with me all morning and he would text me updates.  

She was a bit fussy as they were leaving for the hospital (getting hungry again!) but otherwise not too bad.  They got there and got her checked in, then went up to the imaging floor.  After a brief wait, they took her back.  Russell was not allowed to go back with her.  He said he could see her through some windows before they sedated her- the technicians were all cooing over her!

He said it took about 30 minutes, and then he was with her when she was done.  He said as she came out of sedation she would get fussy and mad and could hardly wait to eat!  She did so great!  He texted updates to me most of the morning until she was out, ending with this picture, captioned "Hi Mommy!"  

My coworkers thought I was crazy for being at work, but it's a crazy time of year at school and besides, what good was I going to be in the waiting room versus being at work?  I was, however, a bit emotional that morning and went straight to the hospital after work.

We had found out about 2 days before that because of her age and prematurity she would actually have to stay overnight in the PICU due to the sedation.  They told us it was a common procedure amongst anaesthesiologists and was just a precaution.  We were bummed about that but knew they were just looking out for her best interests.

Russell stayed with her most of the day.  His Mom came and sat with her at one point when he had to go take care of a couple of things.  When I got there it was just Russell and Ally in the room.  She looked none the worse for wear, and her nurse just fawned over her.  It was my first experience with the PICU so it was a learning time for me, taking everything in and reading everything on the walls around the ward.

I stayed with her by myself while Russell went with the family to dinner.  Then I took the boys home for bed.  Russell called me not long after that from the hospital, saying that neurosurgery was planning to come by either that night or tomorrow before discharge to speak with us about the results.  I told him to please call me so I could be on speaker with them if I wasn't there when they came and he said he would.

The next day I got the boys to school/daycare and got myself to school.  I kept my phone with me all day but Russell never called.  I texted him at lunch and he said he was still at the hospital!  No one had come by yet and they weren't going to discharge Ally until we had spoken with them.  He was a bit frustrated because since he had stayed the night at the hospital he wanted to come home to shower and change clothes!

By the time the school day was over he was still there.  I went to pick up Luke from school since Russell was otherwise engaged.  In the process, my phone rang.  I stood in the hallway and spoke with our neurosurgeon.  He had been in surgery most of the day which was why he was delayed.  What he told me I didn't want to hear, but I'd been expecting.

Ally was officially diagnosed with hydrocephalus.  A shunt would be necessary.  The pediatrician working the PICU had told Russell he was pretty sure she had hydrocephalus just from feeling her head- he could tell the skull plates were a little bit farther apart than they should be, so we weren't surprised.  While it wasn't urgent (there had been talk of doing the surgery over the weekend!) it needed to be scheduled.  I spoke with him about the option of waiting (the next week was my last week of work, and the following week we were spending most of it at my parents' home almost 3 hours away, to visit with them and my grandmother who was up visiting from Florida, so I kind of wanted to wait until afterward if it was safe) because I didn't want her to suffer or have brain damage due to waiting too long, and he said he thought that would be fine.  If we notice any changes that indicate the fluid build up has become more severe (vomiting, lethargy, loss of appetite, bulging soft spot, unconsolable fussiness/crying) then we may need to take action a bit sooner, but he thought we would be fine to wait until the 2nd week in June.  I asked him about other types of surgery for hydrocephalus, and he said he thought a shunt would really be best for her.  I also asked about specialized shunts (programmable or magnetic) and he said traditional would be all she would need.

So there we have it.  On June 11th at 8:15 AM our girl has the first of many surgeries through her lifetime.  I read a statistic somewhere that of all of the 'implants' that can be done surgically (stints, pacemakers, etc.) shunts have the highest failure rate of all of them.  Many people with shunts have dozens of surgeries in their lifetime.  Our prayer now is that not only will this first surgery go well and she recover quickly, but that she will be protected from infections, failures, and blockages that will necessitate surgery more frequently.  Thanks for your prayers!  More exciting updates soon!