Mind Dump

Here's some bullet point thoughts on a variety of subjects.

Ayden

• He is three months old today.
• He continues to do well, as evidenced by his successful clinic visit today.  Everything checked out, so we got to come back home.
• He weighed an even 5 kilos (a little over 11 lbs), so he is continuing to gradually gain weight, which is good.
• He is sleeping better (and longer) through the night now, thankfully.  I don't know if it's the swaddling, the slower sedative wean, or something else, but I'm grateful for it.
• He is still getting continuous feeds overnight, but we got the go ahead from his cardiologist today to try shifting towards bolus feeding.  We will start slowly (what he normally gets in three hours he will get in two, then have an hour break).
• His speech pathologist was out of town, so no bottle trial today at clinic.  This should happen at next Monday's visit.  As Allison has mentioned, his voice is almost completely back, so we are hopeful his throat is close to fully recovered from the intubation.  In turn, maybe this will improve his bottle taking ability.  He also now coughs without an indication that it hurts (and thus without gagging himself), another encouraging sign of recovery.  We shall see if this all makes a difference.

Being at home

• Being at home is great.  It took about 11 weeks, but being in the hospital had pretty much brought me to my breaking point.  I was becoming worried that 11+ weeks of fear and frustration would all get unfairly unleashed on the unlucky person to finally push me over the edge.  I'm glad it didn't come to that.
• Although I'm sure all babies are high maintenance when they are this little, Ayden is especially so.  Between the feeding and medication schedules, it seems as if we are always getting ready to do something for him or to him.  I also understand that because we basically took home a 3 month old, there are some things we did not have to deal with.
• Getting him ready for bed is an ordeal.  We have to get his feeds ready and hooked up, plus get him attached to his apnea monitor.  If we want to put him down at 8, we better have started the process by 7:45 at the latest or it ain't happening on time.
• It has been wonderful to be home as a family these past two weeks.  I am so grateful to have the amount of paternity leave that I do.  I have to return to work on Thursday, which will be hard.  I know Allison isn't looking forward to it.  She's worried about how she will do all of this "on her own." (She will do great.  I'm not worried about her capability at all.)

Having a hypolplast baby

• In short, it sucks.  Really sucks.  To be more specific...
• It hasn't even been two weeks and I already have a serious case of cabin fever.  When your out-of-the-house activities are limited to going through the drive thru, you feel pretty pent up rather quickly.
• We can't go out to eat, either with him or without him.  No going to the movies (there are about 10 movies that have came out or are coming soon I want to see, so this really sucks).  No going to church.  No spending time with friends or family.  No visitors.  No nothing.  I've played golf once this year.  In March.
• Thank goodness for Netflix and my 360, or I'd be going crazy right now.  I need those releases to keep me on an even keel.  I need the distractions.
• I freely admit the above sucky things are also selfish things.  What follows are equally sucky, if not moreso, but most definitely not selfish.
• Worrying that every tantrum, every cough, every sneeze, every bout of spit up (or worse: vomit), etc. will be the thing to push Ayden over the edge is no way to go through life.  It really sucks.  It wears you down and stresses you out.  You live in a constant state of heightened awareness, a constant state of fear.  Again, no way to go through life.
• What makes this reality all the worse is an epiphany I had a few weeks ago:  no one we know can understand what Allison and I are going through.  No one.  Yes, we have met other parents of hypoplasts.  They can relate to probably 90% of what we have dealt with, but not all of it, just like we cannot relate to everything they have faced.  Each one of these kids, despite having the same defect, has a different physiology and follows a different (i.e., smoother or rockier) path.  I am so grateful for their friendship, support, and understanding, but only Allison knows exactly what I face on a daily basis.  I could not make it through this without her.
• With that in mind, I cannot fathom how a single parent could survive this struggle without completely breaking down.  A single parent would have no one else who knew exactly how she felt and (maybe) a whole lot of friends and family who, despite their best efforts, simply will never comprehend what it's like to live this life.
• Don't get me wrong.  I by no means think we have it the worst.  There are thousands of sets of parents out there facing more difficult situations than us.  We at least have the potential for normalcy within two years or so.  Parents of children with Down Syndrome, autism, and other untreatable conditions have no such prospects.  They may never, in any real sense, know their son or daughter.  I commend them for the guaranteed long term struggles they must face.
• I'm also not saying we haven't been supported by friends and family.  We have.  Very much so.  And I am forever grateful.  My point is simply that while many people can sympathize with us, no one can truly empathize.  And that's hard.  Not only for us, but for our friends and family.