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.

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 13^th 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…

Lost in a Nightmare

You know that moment when you are asleep and trapped in a nightmare, your subconscious screams for you to wake up, but no matter how hard you try, you can’t get out?  That’s our life right now.

Gabriel had his surgery a week ago Tuesday.  We are eight days post-op and nothing seems to be getting any better.

Let’s start with the surgery.  For all intents and purposes, the surgery was successful.  The plastic surgeon was able to close the palate, repair the lips, and even close up the side of the gums left open from the last surgery.  All of this took a total of eight, very long, hours, when first estimated to only be four and a half.

Over 150 stitches later, Gabriel came out of surgery looking for his mom.  I sat with him in recovery for an hour and a half before being moved to his room for the night.

That proved to be the longest night of my life.

We thought things weren’t going to be so bad because Gabriel ate eight ounces of formula and two jars of baby food; all through a huge syringe with a long rubber tube on the end.  Then things went downhill.

He started to run a fever, stopped eating, and every time he cried, his stats would drop and the nurse would run in.  They never had to put oxygen on him, but with alarms going off constantly, all I did was hold him in a very uncomfortable rocking chair and cry the entire night.

Despite still running a fever on Wednesday, we got to bring him home.  He was very happy to be home and was actually starting to try to smile – through a very swollen face.  Unfortunately, he was still not trying to eat.

Thursday morning, the fever was over 101, so we called the plastic surgeon and he told us to bring him down.  The surgeon said everything looked good and it was too soon for an infection, but there is the risk of pneumonia since we was under anesthesia for so long.  He called us in an antibiotic, approved a higher dosage of pain medication, and sent us on our way.

Now nearly a week later, he still won’t eat.  Yesterday, I literally held him down and forced about eight ounces of formula into him over the course of the entire day.  Chad managed to get another four ounces in him, so in total, he drank twelve ounces – not very much.

We took him to his pediatrician yesterday to discuss the fevers and the fact that he keeps pulling on his ears.  She said that his lungs sound good and his ears are clear, but if the fevers continue to be over 101, we have to call tomorrow so she can order a chest x-ray to definitively rule out pneumonia.

The other potentially rotten news is that he had his follow-up with the plastic surgeon on Monday who said that while two parts of the palate are holding well, there is one part that wraps around the sides, that is not adhering itself like it’s supposed to.  He told us he is not ready to rush him back into surgery, as this part should attach itself on its own.  The problem is, whenever Gabriel cries, you can see the entire palate bounce up and down like it’s a big trampoline.   We asked what we can do to help or what we should watch for.   

He told us to keep his nose clean (which I caused him to bleed when cleaning it out) and to keep him from crying.  Yeah.  Keep a baby who is running high fevers, is in a tremendous amount of pain, is severely gassy and constipated, and is virtually starving, from crying.  So far, we have failed dramatically at this task.

I don’t know what to do anymore.  I keep asking God to help him heal, but I’m just not sure he’s listening.  So much for finally getting to know what ‘normal’ is like.

I realize this post is a very brief description of what is going on, but since Gabriel only sleeps for about two hours at a time, I know he’s going to wake soon and I wanted to get something out to all of you.

Your thoughts and prayers have been very much appreciated and I ask that you continue those until such a time when we know our Gabriel is going to be safe and sound.

 
Oh, and enjoy the pics below…

Hospital Arrival - Goodbye Wide Smiles

All Dressed Up and Ready To Go

Recovering on Daddy - PS Gave Me Whiskers

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Playing With Daddy's Phone

Finally Home - Trying to Smile

No More Whiskers

G Money Chillin' at Home

 

Because Life Can Never Just Be Boring…

 I know this may shock you, but this post is actually not about Gabriel this time – it’s about Ethan.

Last Monday, Ethan was diagnosed as having ‘pretty severe’ ADHD (Attention Deficit Hyperactivity Disorder).  You’re probably wondering how we got to this diagnosis, so let me back up and share a little tale with you.

When Ethan turned about 2½, he developed a tremendous fear of balloons.  He used to say it was because his cousin popped a balloon in his face, but we have never been able to find evidence of that actually happening.  Since then, we have not had any balloons at birthday parties, and if we go to a birthday party where there are balloons, we pretty much have to leave due to him having a full-blown meltdown – think hysterics.  It doesn’t matter the kind of balloon, be it helium or just normal oxygen filled – it’s all balloons.

This fear of balloons morphed into a fear of other things – bounce houses, chewing gum, rubber bands – anything that could pop unexpectedly.

He also developed a fear of having water on his face or head, which makes bathtime a real treat.

Then there was automatic flushing toilets and fireworks – not the big fireworks, he loves those, but the ones you shoot off in your backyard.

We had tried a million different ways to help him with these fears.  We used to have him stand in his bedroom, looking out the window, while Chad blew up a balloon.  When that worked, we would stand in the kitchen and watch through the window there.  That seemed okay, but as soon as we opened the door to try again, hysterics.

We had him watch his cousins bounce around and have fun in bounce houses, but he never wanted to join and eventually wouldn’t even go within twenty feet of one without going into hysterics.

In addition to irrational fears, Ethan developed an obsession for strange things.  He knows everything there is to know about fire alarms – he can tell you what kind it is and what kind of sound it makes.  He even wants Santa to bring him a BG12 Fire Pull Station for Christmas.  He also can’t stop talking about elevators, escalators, and tornadoes.

Since he started kindergarten this year, it became evident that we were finally going to have to address the fears because they didn’t seem to be going away on their own.  We couldn’t expect that if he was invited to a birthday party that the parents would outlaw balloons and bounce houses.

So, we took him to his pediatrician for his kindergarten physical and asked her opinion about these things.  We wanted to know 1) is this ‘normal’ and 2) should we feed these fears and obsessions or ignore them.

Her advice was to contact a child psychologist.  She wasn’t concerned about the obsessions because, while he chose strange things, it is not unusual for a six or seven year old to become engrossed in something so much they can’t not talk about it.  However, she was concerned with the irrational fears.

We started taking him to a child psychologist about two months ago.  After a couple of sessions, she brought me into her office and said that she thinks he has some serious anxiety issues, but can’t fully diagnose him because she can’t get him to focus, sit still, and stop talking long enough to answer her questions.

A light bulb went off in my head at that moment.  I explained to her that he has always been like that – always on the go, never slowing down.

The thing is, I didn’t bring it up because I really didn’t think there was anything bizarre about it.  I have never been around little boys – I had a sister and two close female cousins growing up, so I just chalked it up to normal boy behavior. 

But then, all these things started rushing towards me – like the fact that he can only sit still through the opening credits of a movie before he has to get up, or the fact that he constantly interrupts us to talk despite our best efforts to teach him manners, or the fact that his preschool teacher pointed out that he seems to struggle with focusing.  The list goes on and on, really.

I asked the psychologist if she was thinking ADHD, and she said she wasn’t ready to say that definitively.  It could be that he just needed a little extra time to mature, but she wanted to do some tests to find out.  She gave us, and Ethan’s teacher, a questionnaire to complete and spent the next couple weeks conducting her test.

Now, there are three main branches to ADHD.  The first is impulsivity, of which he is within the normal guidelines for a six year old.  The other two are lack of focus and hyperactivity, of which Ethan is a textbook case.

I can tell you that I wasn’t surprised by her diagnosis, but I was saddened by it.  Two weeks out (at the time) from Gabriel’s third surgery, the last thing I wanted to hear was that there was something ‘wrong’ with my other child.

As we drove home that night, I was reading about the causes of ADHD.  The first is that it is genetics.  We have no evidence of anyone in either of our families ever being diagnosed with ADHD, so this one seemed to rule itself out.  The second is brain chemistry.  This is the most likely culprit as my family has a long history of chemical imbalances which usually show themselves as extreme anxiety.  The last is environment – problems or things that happen before a baby is born.  Huh.  Well, that’s something I am all too familiar with, given that cleft happens in the first five to eight weeks of womb time (enter mother’s guilt here).

I know what you’re thinking – ‘it’s not your fault, stop blaming yourself, it could always be worse’ – all of which are true, especially the fact that it could always be worse.  For this I feel incredibly guilty and while I completely understand the others, it does not stop my momentary need for a little, private pity party.

No worries though, I will give myself a swift kick in the ass soon and move on.

So, what’s next? 

The psychologist will continue to see Ethan to try and help with his fears.  On the 23^rd of October, he has an appointment with a psychiatrist to discuss if, when, and what kind of medication he might need.

In the meantime, I am reading my ADHD books, creating a reward board, and trying to help Ethan establish a routine.  I am also altering my own behavior to better deal with his.  It’s funny how realizing something is beyond someone’s control makes you change the way you react to them.

And no, before you ask, my blog is not morphing into an ADHD blog; I just thought you should know what’s going on in addition to Gabriel’s journey with cleft.

Surgery for Gabriel is a week from tomorrow.  I’m not sleeping anymore.  Good thing I am writing a romance novel.  It provides a great escape and gives me things to do at four o’clock in the morning.

Until next time…