Crazy Little Thing Called Love

Chad and I will be celebrating our 10-year wedding anniversary at the end of April.  There have been times I didn’t think we’d get this far, and times, like now, where my love for him is so great that forever just doesn’t seem long enough.  All this love has had me thinking lately about what the future holds for my boys.  So, in honor of our love and our anniversary, I dedicate this post to the other two great loves of my life, my sons.

I have learned many things in my life so far and would like to share some of those things with you. 

Kiss a lot of girls.  Don’t let scars, courage, or fear get in your way.  Don’t think that because the first several kisses aren’t great that you aren’t good at it.  No one is.  If anyone tells you they were an amazing kisser the first time out – they are lying.  There are major teeth bumping and saliva issues.  This does get better and practice does make perfect!

Fall in love at least twice.  This way when you find ‘the one’ you know it and will fight with everything you have to protect it and keep it safe.

Be the dumpee and not always the dumper.  Getting your heart broken makes you stronger and helps you know what you will and will not settle for in your life.

When you do find ‘the one’, love them with your whole self.  Give everything you have to make them happy, but remember that your happiness is equally important.

Fighting and bickering with the one you love is ok.  Everyone does it.  Inevitably you will have friends that swear they never fight with their spouse – either these people are lying to you or they are lying to themselves.  No two people, who were raised by completely different people under completely different rules, will agree all the time if they are being true to themselves.

When you do fight, listen.  Don’t sit there thinking about your comeback – if you are thinking about what you are going to say next, you are not listening.

It’s ok to go to bed angry.  If it means neither of you will wind up wounded or in jail – go to sleep!  Things always look different in the morning.

Pick the hill you’re willing to die on.  My sister gave me this advice before my wedding and I carry it with me every day.  If the things you disagree about are not life-altering or things that morally offend you – then they aren’t worth fighting over.  If you do come across something that you would be willing to die for, it’s ok to walk away.  Your father and I will never be disappointed in you if you make choices to protect yourself.

Don’t let anyone tell you how you feel, what to say, how to act, what to wear (unless you ask), or how to live.  While you are in this thing together, you are still you.  If they truly love you, they love all of you – the good, the bad, and the ugly.

I will probably receive frowns for writing this, but in my opinion only, it’s ok to live with your spouse before you are married (if marriage is a choice you make).  If I hadn’t lived with your father before we were married, I might have left him when I found out after our honeymoon that he leaves wet towels on the bathroom floor and his socks end up everywhere!

Make sure the person you love makes you laugh.  There is no greater moment than when you are cracking up or you hear that special laugh come out of your spouse that always makes you smile.

Don’t convince yourself that your love will change.  Again, if you love them and they love you, it’s all of you.  There are times when you will grow and learn from each other, but if you go into a relationship thinking you can ‘fix’ the other person, you are doomed to fail.

You don’t have to spend every second of every day with each other.  Have your own friends that you can spend time with.  You can’t possibly complain about your significant other to your significant other  – that’s what your friends are for!

Along with having your own friends, have your own hobby (at least one).  Try not to make it an all-consuming computer game!!!!

Lastly, teach your children to love.

My boys - I wish you love.  At least equal to half the boundless love I have for you.

Surgery #2 - Done

I apologize for waiting to update all of you on Gabriel’s surgery, but I have had such a crazy mixture of emotions, I thought I better get them in check before I unleashed them on our blog!

First let me start by saying, Gabriel’s surgery on Wednesday went well.  He did great – considering he is a 15 week old who was under anesthesia for 6 hours!  He spent most of Wednesday sleeping.  We had to force feed him Wednesday and Thursday.  By Friday morning, he was officially eating on his own!!!  We ended up switching back to the bottles we used before the Latham Device went is as they are much softer than the Pigeon bottles.  The flow is a little fast, making him choke from time-to-time, but we think he will get used to it again.

Now the not-so-great news:  If you recall, the objective of this surgery was to close both openings in Gabriel’s gums using donor bone and also do a partial lip repair to finally give him nostrils.  Imagine my excitement when Dr. S called us into the consultation room and told us that everything went great!!!  Then he proceeded to tell us that he was only able to close one side of the gums.  No big deal – we knew this was a possibility.  What we didn’t know, however, is that Dr. S told us Gabriel’s cleft is one of the widest he has ever seen.  Because of this, the side of his gums left open will likely not be able to be repaired until he is between 5 and 7 years old.  I asked what happens to the side of the palate then that is attached to the opening in the gums, and he said it would also likely not be repaired until 5 to 7 years old.  Additionally, Frank isn’t exactly where he belongs, but the hope is that the partially repaired lips will push him further into place.

I was devastated.  Here I thought all of this would be behind us before Gabriel’s first birthday.  I thought there was no chance he would remember any of this or be impacted by it except in the event he needs to have his jaw realigned or a nose job.  Now I am hearing that, not only will he have his full lip repair and one side of his palate repaired this year, but that he has to start going to school with gaps in one side of his gums and palate.  Dr. S said that he will likely have to have dental implants and much work done with his teeth.  He also said that speech therapy will be of the utmost importance because Gabriel will learn to speak with the cleft and then have to relearn to speak without it.  He has basically gone from having a bilateral cleft palate to a unilateral one.

I was taken to recovery to rock Gabriel for the hour he needed to spend there.  When I first saw him, I was in complete and utter shock.  He looked so different.  Not bad, just not the face I knew just seven hours before. 

 

And then it hit – I started crying.  Crying because I was happy he was ok, but also crying for the 15 week old baby moaning in my lap.  Crying because of the devastation I felt knowing surgeries are not going to be over as early as we had planned.  Crying because at least three nurses came by and said it was good he would be fixed before he was a year old and wouldn’t remember any of this – I knew better now. 

 

He will remember.  Not these surgeries in the first year of his life, but the surgeries when he’s between 5 and 7 years old, the mass amount of dental and orthodontic work, the countless hours of speech therapy, and the possible nose job when he’s in his late teens.  He will remember having to explain his eating behavior modifications and the gap in his gums to the little kids he meets in school.  He will remember every time he has to give a surgical history as an adult at the doctor’s office – knowing there will be at least four more, and that’s only if the palate repair is successful.  He’ll remember when he’s at his wife’s ultrasound for their first child and fretting about whether or not he passed on clefts to his child.

 

And I will remember.  In fact, I am sure there is nothing that could make me forget.

So, here we are – three days post-op.  I don’t get shocked anymore when I see his face – I am actually starting to forget that he hasn’t always looked as he does today.  He’s smiling, he’s eating, he’s playing and we are the luckiest parents in the world.  So strong, my boy.  I only hope I can muster up enough strength to help him through all the challenges ahead.

We go to see the surgeon on Monday for a post-op visit.  Hopefully, the tape on his upper lip can be removed at that time.  Until then, here are some pictures of before and after.  The change is truly remarkable!

Very first smile - 3 weeks old

Preparing for surgery #2 - 14 weeks 6 days old

Post-Surgery Exhaustion

New Smile - Glad to be Home!!!

Farewell to Frank and Latham

We gather today to say goodbye to our dear friends, Frank and Latham.  It is with much sorrow that you will be leaving us tomorrow.

First, our sweet Frank.  I will miss having to scrape formula, blood, and dried skin off of you.  I will miss seeing how the placement of the bottle would push you from side-to-side.  I will miss wondering if I could accidentally break you off and always having to keep you moisturized.  I will miss you constantly being in the way and how much the baby would scream when he smashed you into my shoulder.  But mostly, I will miss the character you gave our baby’s face.

And Latham.  Oh, Latham.  I will miss the countless hours of cleaning you out.  I will miss turning the screw and then finding out we turned it too far.  I will miss the fact that you take up ¾ of the real estate in Gabriel’s mouth and the sores you have created all over our love’s tongue.  I will miss taking you up to Michigan once or twice a week to have you cleaned and adjusted.  I will miss how huge you make the baby’s clefts look because you are so large and the stink you create from formula getting stuck in places a Q-Tip can’t reach.  And also, I will miss how painful you made our life when trying to feed our son.

You have served us well, Frank and Latham.  Tomorrow Frank will be placed exactly where he belongs within Gabriel’s gumline, and Latham will be exactly where he belongs – in a box in my closet.  Thanks for the memories!! 

On a more serious note, tomorrow is the big surgery day.  We have to leave for the hospital at 4:30 am for a 5:00 am arrival.  It is most unfortunate this surgery is happening the week of daylight savings because I am sure 3:30 am will feel like 2:30 am to my body.  Doesn’t really matter anyhow – it’s not like I’ll be sleeping tonight. 

Truth is I am far more scared this time than I was before the last surgery.  I think it’s because this one is twice as long as the last.  Don’t get me wrong.  There is a huge part of us that is incredibly excited to both see our son’s new face (though I will miss those wide smiles) and to finally be rid of the Latham Device.  While the device did work wonders, it was oftentimes a giant pain.

The other thing making me terrified is that I went to the surgeon’s office yesterday to pick up some consent forms.  These forms provided all the risks that occur with cleft surgeries.  These risks include:

·         Bleeding – this is actually the number one reason I am thankful they have decided to have him stay overnight in the hospital tomorrow night.  I can handle pain management, but if he bleeds (and if past history with the device is any kind of indicator), I can’t stop that.

·         Infection – they say this is rare, but still a possibility.

·         Scarring – well, I am just not sure how there wouldn’t be scarring. 

·         Damage to Deeper Structures – this includes nerves, mucous membrane, bones, and blood vessels.  They also made sure to point out that this damage could be temporary or permanent.  Not sure I like those odds.

·         Delayed Healing – I am hoping Gabriel is not like me.  Seems to take forever for my wounds to heal.

·         Allergic Reactions – probably my least concern since neither Chad nor I have any allergies and this is not Gabriel’s first surgery.

·         Surgical Anesthesia – YIKES!!!!!!!  I hate thinking about this – especially since this is the only risk that could result in the D-word…

·         Unsatisfactory Results – thank goodness he isn’t going in for a boob job!!

·         Health Insurance – not an issue – I have already grilled them.

·         Additional Surgery Necessary – really hoping this doesn’t happen.  Sometimes additional surgery is necessary if there is abnormal scarring, the surgical sites don’t heal or open back up, or if the desired results were not met.

·         Financial Responsibilities – just thought it was funny this was listed as a risk!!!!  All I can say is THANK GOD FOR INSURANCE!!!!  We have actually already met our deductible for Gabriel (happened with the first surgery) so the next two surgeries should cost us nothing.

So, that’s where we are.  I once again ask all of you to include our sweet Gabriel in your prayers.  I will post an update after surgery with pictures to let you all know how things are going!!!

Second Surgery Has Been Set

And not a moment too soon, as far as I’m concerned.  Please don’t get me wrong, I dread the fact that my sweet baby is having surgery again, but life has been so full of drama that I just about can’t take it anymore.

It feels like it’s been a long time since I have updated our blog.  I realize it hasn’t even been two weeks, but this may have been the longest two weeks EVER.  

  

As you know, I returned to work on Thursday, February 23^rd.  The first day was a nightmare.  At that time, Gabriel still had the Frank Mover on his face and I didn’t prepare my in-laws quite enough to know how to deal with all the junk that comes with the Frank Mover – he pulls it down with the chains intact, he pulls it down and knocks off the chains, he pulls it down and the Mover falls apart into two pieces, etc.  I guess I was so used to it, I didn’t really think about all the things that would appear to be going wrong with it. 

Thankfully, that night we had an appointment in Michigan with Gabriel’s orthodontist.  He decided to go ahead and remove the Frank Mover as it appeared to have done its job with moving Frank, but it wasn’t as effective as stretching the tissue of his upper lip.  No sense in fussing with it longer if it just wasn’t going to work.  After the Frank Mover was gone, Friday was a breeze.  My mother-in-law quickly mastered how to feed him, just as I knew she would.  Feeding is always tricky.  There is just no one way to feed him.  I feed him differently than Chad, so she had to figure out how he would take a bottle from her.  I must admit though, I am surprised it happened so quickly.

Saturday, Sunday, Monday passed uneventfully – and then it was last Tuesday. 

I woke up on Tuesday morning and Gabriel had blood on his lower lip and all over Frank.  Upon my investigation of where the blood was coming from, I looked at this pin on a white disk that sits just behind Frank on Gabriel’s septum going back into his mouth.  This white disk was covered in blood, so I quickly identified the location of the issue.  It is not uncommon for this spot to bleed.  In fact, every time I have cleaned around it with my Q-tips, I have made it bleed – a little – but not ever so much that the blood actually came out of his mouth.  As you can imagine, Dr. W wanted to see him immediately to figure out why it was bleeding, so off to Michigan we went.

The hypothesis Dr. W came up with was that Gabriel’s septum was moving, and the pin was not – thus creating a tear in the septum.  To remedy this, Dr. W detached the chain attached to that pin to stop the pressure on that location of the septum.  The bleeding stopped.  Everything seemed to be just fine.  Dr. W decided at this time that it was necessary for Dr. S (the plastic surgeon) to see Gabriel to decide if it’s time for the next surgery.

We took Gabriel to see Dr. S on Wednesday – and good news – he was ready for the next step in this process!!!  Wednesday, March 14^th we will be having surgery again.  The results of this surgery are quite up in the air as Dr. S won’t know the extent of what repairs he can make until Gabriel is in surgery. Because Gabriel has bilateral cleft, he has two openings on his gums, lips, and palate –making repair difficult because it requires a lot of tissue and muscle to repair – something that just isn’t there.

So the plan is, surgery will begin at 7 am.  Dr. W will remove the device (which he is allowing me to keep since I asked for it) and then Dr. S will attach Frank to the right side of Gabriel’s gums using donor bone.  He will then evaluate whether or not he can attach the left side at that time – if he cannot, he will leave the left side open until the palate repair (sometime before Gabriel is 1) to avoid having another surgery.  Big relief to me!!  I was so worried that if they can’t close up both sides of the gum during this surgery it would mean our poor baby would have yet another surgery this year.

Dr. S will then determine what to do with Gabriel’s upper lip.  The plan is to close the lips going into the nostrils (finally giving him nostrils) and leave the bottom of the upper lip open in two places.  If he finds that he needs more muscle to keep Frank and the gums where they belong, he will go ahead and do the full lip repair at that time.  Basically, this means that we have no idea what our son will look like when he comes out of surgery.  He could have a full set of gums and a full set of lips – or he could have one side repaired and not the other – or he could have any combination of the two.  The only thing we really know is the surgery will take 4 – 5 hours.

4 – 5 hours!!!!!  This is twice as long as the first surgery and that seemed like FOREVER!!!!!  If you thought I grilled the first anesthesiologist, then just wait until next Wednesday!!!!!

Gabriel actually should be able to go home the same day as the surgery – which right now has me all sorts of worried.  I know everything should be just fine, but I worry about bleeding, pain management, feeding, and a host of other things that could go wrong.  There is an added level of safety knowing a nurse is right outside the room.

Ok – so back to the drama.  Last Thursday was fine – I actually worked an entire day!  Then Friday…I woke up and Gabriel’s face was covered in blood – about five times more than Tuesday.  I put him under the light to get a better look and determined that the blood was not coming from the same place as Tuesday – the white disk was still white.  Now I was stumped.  The entire device had blood stuck in it, so I was guessing that it was coming from under the device where his septum continues to the back of his throat.  Again – we were on our way to Michigan.

I learned Friday why our doctors never let us into the room when they work on Gabriel.  I always speculated that they didn’t want to get punched by any parents for the amount of crying the babies do – but now I was sure!!  Since Dr. W dropped everything to see Gabriel, he had no assistants to help him – so guess who had to help…I sat in a chair with Gabriel on my knees – his feet towards my chest and his head between my knees.  Chad stood at the end of the chair holding Gabriel’s head still while I held down his arms and legs.  Dr. W cleaned out the device to get a good look at where the blood was coming from.  Feel free to imagine how much screaming and crying were happening at this time.

The consensus was that everything in Gabriel’s mouth has moved so far forward (as it was supposed to) that now his septum was running right into the screw in the device.  Chad said it looked like someone had used a cheese grater on the roof of Gabriel’s mouth – it was awful!!!!  Dr. W decided to release all the chains on the device – thus removing any pressure on the device.  This would, hopefully, allow the device to relax a little and put space back in between it and Gabriel’s septum.  Seemed to have worked – the massive bleeding has ceased.  He still wakes up with a little blood on his lower lip and Frank, but nothing like it was.

So, now the device is just pinned into the roof of his mouth – not actually doing anything.  I worry that things will start to move back to where they don’t belong, but apparently the doctors aren’t concerned as they have not attempted to move the surgery up at all – which is fine with me.  I have so much to do at work before I can be out of the office again, that I really need the next several days.  I just hope they are baby drama free so I can actually work!!!  I also need several days to keep working up some good anxiety in anticipation of the surgery!

Well, that’s enough for now.  I am sure I will update our blog one more time before next Wednesday.  Until then…