Hi-Ho, Hi-Ho, It's Off to Work I Go

Tomorrow is the big day!  After three months at home with Gabriel, I am finally returning to work.  Unfortunately, it is with very mixed emotions.

Don’t get me wrong – I LOVE my job!  I am blessed with great challenges, amazing bosses and co-workers, and the ability to use my brain in ways that actually makes me feel like I am accomplishing something every minute of the day.  There have been many, many times over the past three months that I wish I could go back to work.  Back to the land of normal.  Back to something I am really, really good at.

But now, with tomorrow being the day, I feel like the last three months have flown by and going back to work has come all too soon.

First, there is the obvious reason it’s hard to leave my son – he is so much fun!!!  Such a happy boy – he never cries unless he’s hungry.  And despite all he has been through, he is the only person in my life who smiles the second he sees me.  Who would want to leave that?

Then, there is the other reason I don’t want to leave my son – I am the only one who knows how to take care of him – which leaves me scared.

Currently, I am the only one he will eat for.  Chad feeds him every now and then, but Chad has been at work a lot lately, so Gabriel has naturally learned to take a bottle best from me.  I am the only one who knows his quirks about eating – like when he moves his head in different directions it means he wants the bottle on the other side of his mouth.  I know there is a good ten minutes of drama before he will take the bottle and that sometimes you have to jiggle him to get him to cooperate.  I don’t know why this is, I just know it works.  I know how to know when he’s about to choke so I can try and stop it before it happens.  I know how to burp him and do it better than everyone else.

I am the only one who knows how to troubleshoot the stupid bottles we use – which come with all sorts of aggravations.  You can’t have the top on tightly at all, but then you can’t have it so loose the formula leaks out.  You have to watch for un-dissolved formula clogging up the vent inside the nipple.  Sometimes the nipple collapses.  When this happens, you have to loosen the top, but again, not so much that the bottle leaks.  If the bottle leaks for no apparent reason, sometimes you have to stick a toothpick in the outside vent, or you have to take the top off, clean around the rim and put the top back on.

In addition to eating, I am the only one who has ever turned the screw in the Latham Device and kept the device clean.  I am also the only one who knows how to put the Frank Mover back on when he pulls it off.

I know what each cry means.  I know when he needs a nap.  I know that he likes to be held upright and only likes to be on his back when he’s sleeping or lying on his play mat.  I know he sleeps better when the TV is off, no matter how much you want to watch your show.  I know he likes to sleep with the swing moving for naps, but likes to be still overnight.  I know he doesn’t know it’s time to sleep until I tuck a blanket in around him.  I also know that when he’s fighting sleep, you have to tap a rhythm on his chest or belly until he finally nods off. 

The list goes on and on…

I suppose I’ve done this to myself.  I have made him need me.  Ethan hates me right now, so he doesn’t seem to need me anymore.  Chad is an adult, and has never really needed me.  And who doesn’t want to be needed?

I have had plenty of opportunities to teach my mother-in-law how to feed Gabriel (since she will be taking care of him), but haven’t done it or the timing was never right.  I could have tried to force Chad to turn the screw or clean the device, but I know he fears hurting our son, so I willingly took responsibility for both.   The other things, I guess, are just things that any mother figures out who is with their child everyday for three months.  I just don’t remember it being like this with Ethan.

I am sure everything will be just fine and that I will be so consumed by being back at work that I will not obsess about how he is every second of the day.  I am sure.  I am sure.  If I just keep telling myself that, I am sure I will start to believe it!

Before and After - Prepare to be Amazed!!

Not much to share today.  I mostly just wanted to provide some before and after pictures that I think are astounding.  It’s hard to believe how much has changed since the Frank Mover was put in place on Monday!!

Quick update before the pictures though.  We went to see Dr. W last night and found out that we have moved Gabriel’s septum too far with the turning of the screw.  So now we have to turn the screw in the opposite direction for a week to try to get his septum to reside equally between the right and left side of his gums.  Not a big deal.  This time it is loosening the device instead of tightening, so it shouldn’t cause him any discomfort.  The Latham Device is great, but it is really made so that we can continue to make slight adjustments until everything is in its perfect place for reconstruction.  It’s not the kind of device that requires no maintenance – that’s for sure!  Dr. W thinks we should be having our second surgery in a month.  No specific dates yet.  Still just speculating for the most part.  Need to see how well things continue to go with the Frank Mover and turning the screw in the opposite direction.

Regarding those pictures.  The first picture was taken the day before Gabriel’s surgery to have the Latham Device put in.  Notice where Frank is in that picture – he sticks out all the way past the end of Gabriel’s nose.  The second picture was taken on Tuesday night – just 24 hours after the Frank Mover was put in place.  You can see – even with the Frank Mover in the way – just how much Frank has moved back to where he belongs!  TRULY, TRULY AMAZING!!!!!!!!

Before Latham Device and the Frank Mover

24 Hours After the Frank Mover is Added

Strong Man

When I was growing up, my mom always told me to make sure I picked friends out of people who were better than me.  That way, they would raise me up to be a better me instead of me lowering myself to match their standards.  At 13 years old, I was constantly annoyed by this ‘rule’, because like all 13 year olds, I was certain there was no one better than me.  Thus leaving me completely and utterly friendless!!  Now, at 34 years old, I have come to terms with the fact that I am surrounded by people who are endlessly better than me – and I am ok with that.

I have kept a list of the strongest people I know since I was 18.  The top 5 tends to change as people come and go into my life, but for the most part, the list has remained constant – even in death when I have lost people on my list.  They stay on the list because what they taught me in their lives still impacts me today and continues to push me to be a better me.

These people – young and old, male and female, living and deceased – are on the list because they have overcome great trials, beat death defying odds, give of themselves without asking anything in return, and exist as themselves without ever apologizing for who they are.  They are all beautiful and I could never be me without them.  They include, but are not limited to: my parents, my husband, my sister, my best friends, my grandmother, my great-aunt, and today – my son.

I know what you are thinking – he is only 2½ months old and has not lived long enough to be one of the strongest people I know.  But he is.  After everything he has endured so far – surgeries, feeding troubles, the Latham Device and all that comes with it, choking issues, weight loss, a terrible cold with nowhere for the snot to go, and a host of other things – yesterday he had an external piece added to the Latham Device and came out of the 2-hour torture session smiling.  In fact, for the most part, he is always smiling.

I always worried I wouldn’t have enough strength to get him through all this; but as it turns out, I am now pulling my strength from him.  

So, regarding that 2-hour torture session.  As previously mentioned in earlier posts, the Latham Device has been working extraordinarily well at moving Gabriel’s gums and palate around.  What it is not doing yet, is moving Frank.  Yesterday we had to go to Coldwater, Michigan for an appointment with our ortho doc who constructed the device.  He has been working on a piece to add to the device that would 1) move Frank to where he belongs, and 2) attempt to stretch the existing tissue (or Gabriel’s upper lip) on top of Frank.  Our doctors have been concerned that Gabriel just doesn’t have enough tissue to use during the lip reconstruction, so Dr. W is attempting to create more tissue by stretching what is there.  I had asked in the past if I could donate tissue to him, but the answer was no.  If they can’t stretch the existing tissue enough, they will be forced to take it from elsewhere on his body, such as behind his ears or knees.  When they do this, you then have other things to worry about like rejection, infection, additional scarring, and pain.  It’s not ideal.

Amazingly, in 16 years of fixing cleft lips and palates, Dr. W has never done this before, nor used an attachment like this to move other babies’ Franks, so our Gabriel is really playing the part of his guinea pig.  And so far, he is playing it well.

During the appointment, our Gabriel actually fell asleep a couple of times while Dr. W was making adjustments to the piece – for ease of conversation, we are going to call this piece ‘the Frank Mover.’  The Frank Mover is a spring-loaded device that has two little hooks that hang on in Gabriel’s nostrils.  The top of the Mover sits atop Frank, both pushing Frank down and applying pressure to the tiny lip that is there.  There are two chains that attach to the Latham Device to hold the Frank Mover in place and will be adjusted to tighten the pressure when Frank starts to move.  Since this is something entirely new to Dr. W, we don’t know how long Gabriel will have to wear this.  It’s really just trial and error right now.  I can tell you that Gabriel has managed to pull the Mover off 3 times in less than 24 hours, so it could take awhile.

There is really great news in all of this though.  The Frank Mover has not impacted Gabriel’s ability to eat and – wait for it – I no longer have to turn the screw in the Latham Device!!!!  I started noticing a couple of days ago that the screw was getting harder and harder to turn.  Dr. W confirmed yesterday that his gums and palate have moved to where they should be, so the work of the actual Latham Device is complete!!  This is really very exciting!  Gabriel has only had it for 3 weeks.  The baby our cleft team worked on before Gabriel had his in for 4 months and his parents were still turning the screw all the way up to the end of the 4 months.  I guess perhaps our baby is an overachiever!!  I can’t imagine where he gets that from…

So now we wait and see what happens.  I have to take Gabriel back to Coldwater on Thursday for Dr. W to see how the progress is going and determine if his experiment is working or not.  

I just can’t believe how strong someone so little can be.  I am amazed and in awe of my child.  My fears are being put to rest by how well he is handling all of this.  To say I feel blessed would be a huge understatement.

I have included pictures of the Frank Mover and a couple others that are just for fun!  Until next time…

The Frank Mover - I know, he looks unhappy - but I am pretty sure anyone wearing this thing would look unhappy!!

My boys - please excuse the pizza sauce and remnants of Ethan's cold on his face!!

Because I love wide smiles!!!!