Saturday, December 1, 2012

They say it's your birthday!



Though it is so hard to believe, our baby is officially one year old today – and what a year it has been!!!

Here’s what’s been happening since Gabriel’s last surgery nearly three weeks ago.

During the surgery, it was discovered that we were not fixing a hole – the entire palate opened back up.  Just to help you understand how open it was, before Gabriel’s first palate surgery, he had two uvulas (you know, that thing that dangles in the back of your throat).  After the initial palate repair, he only had one.  When the surgeon went in to fix the hole this last time, there were two again.

After six hours of surgery, our stay in the hospital and the following first couple of days went surprisingly well.  Gabriel was drinking from a bottle with little difficulty and sleeping as well as he had been prior to the surgery – meaning, he still wakes up every four or five hours, but I think that has a lot to do with the fact that he is limited to only drinking formula, which just doesn’t keep him very full (he used to sleep ten hours straight and then go back to sleep, after a bottle, for another two).  We didn’t battle fevers this time and Gabriel’s spirits were quite good!  The only thing that really even seemed bothersome at all was his nasal stints.  He had about three inch long tubes sewed into each nostril in hope that his air passage would stay clear and we could avoid the palate trampoline effect we had the last time.  The stints didn’t bother him tremendously though, except when I had to put saline in the tubes to try and keep them clear.  

By Saturday morning, I noticed a hole in the palate already.  I tried to not panic since I didn’t know for certain it would mean we would be going back into surgery already, but after the year we’ve had, panic just sort of happens.

We had a follow-up with the surgeon the following Monday and, to my surprise, he confirmed that while there is a hole, due to its size and location, there is a possibility it will close up on its own.  Furthermore, if it doesn’t close on its own, we can actually wait years to fix it.  I was literally jumping for joy!!  I didn’t care if the hole didn’t close on its own, but I care very much that my baby might be able to go at least a year without having surgery!  Dr. S removed the stints, which I actually planned on asking him if I could have them until I saw the yuck stuck to them!  He told me we could go ahead and start giving Gabriel baby food for a couple of weeks, then anything a couple more weeks after that, and that he didn’t need to see us back for six weeks!

Well…we waited until Thanksgiving to give Gabriel any soft/baby food, just to allow the palate to continue to heal a little longer.  As soon as I put the first spoonful of mashed potatoes in his mouth, I realized this new hole was much bigger than I originally thought.  All the potatoes kept coming out of his right nostril.  Chad kept telling me that I just needed to figure out how to feed him (again) so he doesn’t push so much food into the hole, but I was pretty disheartened about it – and still am.  I just know that when we go to our six week check-up, we are going to find out that repairing this hole can’t really wait.

So that brings us to today – Gabriel’s first birthday!  We didn’t have a party for him today.  I actually decided to put it off a week to wait until it is ok to give him table food, really hoping he will be able to eat cake – hence why there are no pics today, give me a week or so.  Instead of a party, we took him to see Santa and just spent the day as a family.

Odd thing though, all day yesterday when I was thinking about Gabriel turning one, I kept getting really weepy.  I don’t think it’s because my baby is growing up and I won’t be having any more babies to cuddle.  I think it’s because the heaviness of everything that has happened in the past year just finally hit.

In the past year, we have been through four major surgeries.  We’ve taught Gabriel how to eat five times.  We experienced the torturous Latham Device.  We went from sleeping in a swing to a crib, back to a swing, back to a crib, and now back to a swing – with little hope of getting him back in his crib.  We’ve listened to him scream and cry in pain, agony, and sheer terror without being able to do a single thing for him.  We’ve watched him lose weight over and over again.  We’ve been to so many doctor’s appointments I finally stopped counting.  We’ve cleaned out his nose, the device, his mouth, and his ears like a plumber snakes a drain.  We’ve cried and screamed, blamed and questioned.

But it hasn’t all been so grim.  When most people fall in love with their child’s face the first time they see them, we’ve had the honor of falling in love with Gabriel’s face three different times, when the changes are so dramatic after each surgery.  We’ve seen him smile, heard him laugh, watched him learn to roll over, sit-up, and sort of crawl.  We’ve heard him say Mama and yeah-yeah.  We’ve been blessed with a greater understanding of just how unconditional love can be.

And Gabriel, without even knowing it, has given us so much.

His brother got a best friend.  He taught us how to be strong without really trying.  He took two people who undoubtedly loved each other, made them fall hopelessly in love all over again and become an unbreakable force.  He made me realize that I don’t need the world or riches beyond my imagination.  As long as I have him, Ethan, and Chad, I already do have the world.

I love you, Gabriel.  You are the most amazing little man I have ever known and will forever be proud to be your mom.

Tuesday, November 6, 2012

Here We Go Again – Surgery Number Four – Coming Next Week



So, the weekend before this one that just passed, I started noticing an excessive amount of formula and baby food coming out of Gabriel’s nose.  I told Chad I wanted to look in his mouth, but Chad advised me not to, because I just get paranoid.

That Sunday, I went to pick up some food for lunch.  Upon my return, Gabriel was sleeping on Chad’s lap and Chad asked me to grab a flashlight because he thought he saw a hole in Gabriel’s new palate.  I grabbed a flashlight and took a look – sure enough, there appeared to be a hole there.  I couldn’t be certain if the hole went all the way through to the nasal cavity or not, as I am not an expert, so I decided not to panic just yet.

We had a regularly scheduled follow-up with Gabriel’s plastic surgeon that Monday.  I told him I thought there might be a hole.  When he looked into Gabriel’s mouth, he said, ‘yeah, there’s a hole.’
After apologizing to our baby, he told me we would be having surgery in 2-4 weeks to repair the hole as it is large and the nasal cavity is exposed.  I asked if this was common, and he indicated that it is when dealing with such a large cleft.

Surgery has been scheduled for next Tuesday, November 13th at 10:30 in the morning.  It should last for three hours and will again require us to spend the night in the hospital for observation.

Funny thing is, when our surgeon said we’d be going back into surgery, I had absolutely no reaction.  Perhaps it was because I was stunned, or maybe I saw it coming.  I don’t know.  What I do know is, I made some calls to Chad and our families, made arrangements for my work, called my friend to see if she could stay with our dog, and went about my day.

When I fell asleep later, I woke to that horrible realization that it wasn’t all just a dream.  It was real.  We were doing this again.  Already.  That’s when I fell apart.

Once the complete sadness passed, the anger set in.

A week later and I’m still pissed.           

At a time when a parent is planning for their baby to taste their first Thanksgiving dinner, smash a handful of cake into their mouth on their first birthday, and eat their first Christmas cookie, my baby will do none of that.

People keep telling me that there are many more Thanksgivings, birthdays, and Christmas’s to come, but these are his first (ok, technically not his first Christmas, but he was only three weeks old last year at Christmas).  Parents go crazy documenting all of the things that happen in their children’s first year of life.  What have I documented?  A first smile, a first laugh, a first surgery, a second surgery, a third surgery, and oh yeah, a fourth surgery.

There is something just so unfair about a baby having their fourth surgery in their first year of life.  After this surgery, he will have had more surgeries in one year than most people have in their entire lives.

I don’t want this for him.  I don’t want him to think this is normal.  I understand he won’t remember this – but it isn’t over, and that makes me mad too. 

2011 was a horrible year for me personally.  Someone I love dearly (as previously mentioned) was diagnosed with Stage 4 cancer and we were told our child would be born with a BLCLP.  I waved goodbye to 2011 thinking that 2012 would be my year.  Forget 2011, it didn’t happen.

Then, in 2012, my loved one continues their battle with cancer (although technically there is no evidence of disease right now, but is still going through chemo), my grandfather passes away, my eldest son is diagnosed with ADHD, a core member of our family suffers a series of strokes, and my infant son is having his fourth surgery in one year.  So much for 2012 being my year.  If 2013 doesn’t bring better things with it, I will likely pull the cover over my head, lie in bed, and just wait it out.

I’m sick and tired of proving my strength over and over again.  If God has some great lesson or plan for me, I can’t understand why He just doesn’t tell me what it is so I can have one shot at actually being successful.  Because, right now, successful is not what I feel.

At any rate, I also wanted to thank those of you who have reached out to us during the recovery from this last surgery.  Your offers of thoughts, prayers, meals, babysitting, playtime, and everything have not gone unnoticed and were very much appreciated.  I apologize for not responding to many of you.  You must believe me when I say that in the past month, I have not wanted to speak to anyone – not my family or closest friends even.  It’s been a very dark place that we have been living in.
 
I know the light will start to shine again for us soon.  But I can almost guarantee it’s not going to be this year…