Oh, These Moments.

Today has been the day we were aiming for to bring Aidan home.  It's been a long 3 months, with Ty and Aidan both in and out of the hospital.  Months of watching them fight, struggle, get better, backtrack... with Ty ultimately back to his norm and Aidan still battling.

He had a horrible night.  Here we sit on the morning we were supposed to pack him up for home, not knowing what to do now.  Sometimes I feel like there isn't anything the hospital can do for Aidan that we can't do for him at home.  There seems to be no magic trick... We as a family are exhausted running to and fro between home & hospital. Our time amongst the boys is split & Jason and are I like two ships passing in the night.  We'll be just as exhausted if Aidan comes home, too.  But at least we will all be under the same roof.

My highest hope has always been that Aidan will push through this virus, this craziness, and that we will see his bright happy eyes - his big, warm smile.  It's been a lot of ups and downs, which makes it hard for us as parents to make any definitive decisons.

We had 'the talk' with Palliative Care the other day, again.  The same talk we had shortly after Aidan's birth.  Discussing his inevitable passing... How we cannot put a number on his days, but we have to know it could be right around the corner.  Not a conversation any parent wants to have.  We talked about Aidan's comfort and how that has always been our priority.  As parents there are times we want to be selfish and do/try just about everything we can to 'save' our children, or in our case, give us more time.  But we have to think about what Aidan wants most...

7 weeks old

We saw Ty get through this (though it was a lengthy fight for him, too).  We know Aidan is so, so strong.  If anyone can surprise us and bust through this, it will be him.  Hands down, no doubt about it!  I would love for a Christmas miracle to happen right about now!  For all 5 of our boys to be at home for Christmas - with smiles on their faces.

We may have to take Aidan home on hospice and stop further treatment.  Now, we've done this before... When Aidan came home after he was born he came home on hospice.  He was given only a few weeks, maybe months, to live.  We took our little baby boy home and waited, and watched... as time went by we learned to really soak up and enjoy each day.  We watched our boy push through so much.  His once constant seizures became less and less.  By 8 months old, we had taken him off hospice.  Now here we are, Aidan is 3 and 1/2... we are discussing hospice.  Not knowing if it truly is 'his time'.   We could bring him home and have 3 more years with our little guy!  We just don't know...!

Piano player!

We have been grieving for Aidan since his birth.  And for Ty since I was pregnant with him.  When you are told your child will live a short life, the grief process is continual.  Jason and I have always known the boys would leave us at some point.  But when they've been doing so, so good - for so long now, we became so comfortable with them being here, on earth with us.  It's hitting us pretty hard that we have to go back to 'that place'.

This time is different then when we brought little Aidan home on hospice as a baby.  As a baby, I didn't see him as suffering really.  I didn't think he was in constant pain.  This time is harder.  For we see this little boy, lying in a bed, and he isn't the little Aidan that is happy & smiling.  Aidan is in a lot pain and discomfort.  The source cannot be found, nothing much seems to help or ease his pain...

We tried keeping him home and we watched him suffer hour after hour.  Jason and I rarely slept.  We were pulling our hair out, trying to find ways to comfort Aidan.  No meds will touch him sometimes.  Other times the meds completely snow him.  So now, if we take him home, we will continue to watch him be in pain...  It's the most exhausting and heartbreaking thing to ever experience.

I'm guessing that most parents don't sit and ponder on how they want their child 'to go'.  That just isn't something that typically crosses a parents mind.  I know I have never sat and thought about how I'd want Cole to pass away... I've only thought about how I hope he lives long, long after me.  With Aidan and Ty, we have had to think of all the ways we could lose them.  Since they day they were born, I have prayed that the day they left his earth, that it'd be in a soft, quiet, peaceful way.  A painless way!  *But please know, this isn't something I've thought about a lot, or day after day - but I've thought about it enough...*

Jason and I had always thought that Aidan or Ty would either have a seizure that would take them away, or they would pass in their sleep, or... get sick and we would sit and hold them and wait with them as they passed.  So we would either be with them when they left this earth, or not.  We've always prayed so, so hard that we will be with them, holding their hand.

I never in a million years thought I'd see Aidan or Ty be in this much pain.  I never thought I'd see Aidan, who does not deserve one ounce of this discomfort, be in pain for so long.  So what now??  We bring him home and watch him be in pain for months and months?!  And just hope and pray he phases out of it?!  It is breaking our heart seeing our little boy like this.  We never, ever imagined things to be this way.  All I want to do is hold and comfort Aidan, but it's almost impossible to hold him when he's in this much pain.  He arches, he pushes, he kicks... Breaks my heart that I can't just scoop him up and hold him.

There are moments where he calms, and there are times where he sleeps oh, so sound.  These past few days he has been quite relaxed and I've laid in bed with him, held him for hours and hours.  Good days and bad days.

Poker face!

I know Aidan is the strongest little boy ever.  I know he can fight through this.  But I've also told him, if he ever is tired, that he can tell me.  No Mother ever, EVER, wants to tell her baby boy that it is okay to leave.  Can you imagine never seeing your child every single day?  I can't.  Can you imagine seeing your baby in extreme amounts of pain, day after day?  Heartbreaking.  What's the lesser of two evils?  Letting your baby go, and having to wait for Heaven to see him again?  Or watching him suffer day after day?  Of course we know the answer to that, the answer is - we never want our child to suffer.  We'd rather them be in Heaven even if it meant we would not see them for a very long time, and we'd miss them more than words can say.  Yet, that being said, we will never give up on hope.  The hope that Aidan can break through this and be happy again.  Both Aidan and Ty have already shown us so much.  They've both come so far.  So we know it is possible.  With hope anything is possible. 

What has been getting us through is those good moments.  Those days where he melts into our arms.  Where he looks up at us with those big brown eyes... I try hard to read his eyes, to see what he is trying to tell me.  This is all so new, seeing him like this, so I don't quite know what to do for him...

As of this morning, he isn't tolerating his feeds as well.  We are starting to see blood again, coming up through his tube and he's thrown some up.  Maybe the after effects of that nasty flu bug he caught around Thanksgiving?  I think it really tore his stomach up.  We may try continuous feeds rather than bolus feeds.

I know this is has a real downer vibe - which is totally not my mantra!  I feel I need to get this all out though, in order to push forward with hope.  I felt like I needed to write out some of our thought processes... Because sometimes people ask me if Aidan is getting better.  I don't know how to answer that sometimes.  All I know is we are taking it day by day.  So some days are better, some aren't.  In the grand scheme of things though, he may never be 'better'.  Or he may never get back to the place he was before this virus hit.  Then again, I will never doubt his strength and preserverance - if this boy wants to snap out of this, he will!

So where I stand right now is - I feel the hospitals can't do much for him, we can't do much - it's up to Aidan kind of?  We will continue to do what we've done since the minute he was born - LOVE him, care for him, and hope for him.  Jason and I have always made it a point to not be full of sadness around our boys - to be uplifting, to shower them with love and happiness.  We have our moments, yes, where the tears hit us.  But we push on for Aidan, for Ty, and for little Cole.

These boys were given to us for a reason, and we don't want to fill our moments with sadness.  We need the messages of hope.  We need the reassurances.  We need the feelings of faith.  To all our friends and family who have been checking in, giving us pep talks, letting us cry -- we so appreciate it and will never, ever forget it.

We don't know how Aidan's story will play out.  We just know it is a very important story!  One that he alone will write... (co-authors with God!).  It's my greatest hope, and my Christmas wish, that we can all be home together as a family.  That Aidan pushes through this.  That his smiling face resurfaces.  That the pain subsides.  Believe.  Believe.  Onward with positive thoughts!!!

Please, please keep the prayers coming.  Keep the messages of hope coming.  We need them.

Aidan, you are so loved!  We are pulling for you, bubby!