Whew - Managed Time for an Update

You know, I really thought there would be an end to this blog as soon as Gabriel turned one.  When I found out Gabriel would be born with cleft, everyone kept saying, ‘don’t worry, he’ll be all fixed by his first birthday and no one will ever know.’  If I could go back in time and tell the person ‘I was then’ what the person ‘I am now’ knows, I would tell her to prepare for years and years, and don’t get your hopes up that it will all be ‘fixed’ in one year’s time.

As you know, if you’ve been following this blog, there is still a hole in Gabriel’s palate – even after the four surgeries he had last year.  I had been very nervously waiting for January 7^th to roll around when we were scheduled to see his plastic surgeon again and would find out if there is another surgery in our immediate future.

Well…there isn’t!!!  Not in the immediate future, anyhow.  Gabriel went through so much in his first year, and because of the size and location of the hole, the surgeon feels that putting him through surgery again would be no good for him and the hole won’t stay closed anyhow.  Additionally, the surgeon feels that his palate is too short and needs to be lengthened, so he really needs to grow more in preparation for that.  So, we are left with a hole.  And what do we do about that, you ask? 

 

We plug it.

Gabriel’s orthodontist, Dr. W., has made a new appliance for Gabriel’s mouth called an obturator.  This looks much like a retainer with no wires and has a bumped-up part on it that fits into the hole.  We get the obturator to stay in his mouth by securing it to his new palate with Poligrip – yep, the glue-like substance used for keeping dentures in place. 

 

Now, this new appliance has its good points and bad points.

 

For the good –

Gabriel can finally eat and drink without any food or milk coming out of his nose!  This has been pretty fantastic!  Certainly cuts down on the number of Kleenex used to clean up the world’s most disgusting sneezes!

Also, the obturator gives him an actual full palate, which should greatly improve his ability to learn to speak.

Now the bad –

The obturator won’t grow – this means that he will have to have a new one made every 3-6 months to keep pace with his growth.  Dr. W. thinks we will likely go through 4-6 of these appliances before he has his next surgery.  Every time one has to be made, a couple sets of impressions have to be taken, which makes Gabriel scream like the poor child has been put in an iron maiden or some other form of medieval torture device.

The obturator requires cleaning.  I have to take the appliance out of his mouth every 7-10 days to give it a good cleaning as too much yuck under there could destroy the tissue of the new palate.  Gabriel is not fond of this, as you can imagine.  Part of the problem is that when the appliance is in his mouth, the tissue around the hole will automatically start attaching itself to the appliance, so when I have to take it out, I cause tissue to tear and bleed.  I have found that dealing with this is actually worse than turning the screw in the Latham Device.  Never thought I’d miss the ‘good ole days.’

The obturator doesn’t always like to stay in.  On three occasions now, for whatever reason, the appliance has mysteriously removed itself from Gabriel’s mouth – causing mass panic as we search our home and grandma’s house hoping no animals have eaten it or no one picked it up and threw it away, not knowing what it was.

Lastly, we are now making more frequent trips to Michigan again to visit Dr. W. and his staff.  Not that we don’t love them – we do – but now Gabriel screams at the mere sight of any of them.  It’s great…

In other news, at the repeated request of Gabriel’s doctors, we contacted First Steps (an organization in Indiana who deals with physical and speech therapy for children under the age of 3) in the beginning of January.  After being evaluated, it was determined that Gabriel needs both physical therapy to deal with some delays in his gross motor skills and speech therapy, as he is still not speaking and not really even babbling as he should be.

He started physical therapy a couple of weeks ago and it is just amazing how quickly he is progressing!  He used to army crawl using only his left arm and right leg, but is now crawling (very slowly) on all fours.  Our focus for the next week is getting him to pull himself up from sitting to standing and taking some steps on his own.  His therapist thinks she will be done with him in just a couple of months and then we can move on to speech.  In the meantime, his ear doctor wants us to start teaching him as much sign language as possible.

I have learned that it is nearly impossible to learn sign language from a book and have decided that I just need to breakdown and buy a video.  What I have managed to learned and then taught him, he has picked up on very quickly.  He signs milk, eat, more, all done, night-night, and bye-bye.  He also has become really great at shaking his head no!!  We are working on nodding yes.

I can certainly tell you that life has not been dull in the Hillegass house, and hopefully reading this will help you understand why I have been so pokey about updating our blog.  It’s funny.  I was so excited to not have to have another surgery for a couple of years, and yet, now we appear to be busier than we were when going through all those surgeries last year.  Some people are just never happy...:)

So…to the ‘me then’, from the ‘me now’ – Hold on to the seat of your pants, Sister.  This is going to be a long, bumpy ride.  You will, from time-to-time want to get off, but believe me, it will still be the greatest ride of your life!

And, a couple pics to make you smile...Ignore my hair in the first one - I have no idea what was going on.

 

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.