There's a light at the end of the tunnel

Can you hear me singing?!?!

After eight horrible days of force feeding and non-stop crying, Sunday we finally turned a corner!!  But let’s start with Friday night.

Friday night, Gabriel had his third appointment with Dr. W to have the Latham Device cleaned and possibly adjusted – it wasn’t, however, adjusted this time because Dr. W felt the tension on the chains was still good and not loosening up yet.  Good news - Dr. W is amazed by how quickly the device is working!!  At our first appointment post-surgery, Dr. W indicated that he thought the device would be in for six weeks.  Not bad considering the last baby our cleft team worked on had his device in for four months!  Dr. W showed us the impressions he took of Gabriel’s mouth so we could see that the left side of his gums have moved completely into place and the right side has moved to 50% of where it needs to be.  In fact, prior to having the device, I used to be able to put the head of a Q-Tip between Gabriel’s gums on the left side and Frank without touching either the gums or Frank; now I can’t get anything between them!!  Frank has not really moved yet as the device is currently working to fix the gum line, the palate, and straighten out the septum prior to moving Frank to where he belongs (all things that can’t be easily seen).  So, needless to say, I am not including any profile pictures just yet, as there is nothing really to see.

While we were also at the appointment with Dr. W, we were inquiring as to who could help us with our feeding issues.  Dr. W took one of our bottles and fed Gabriel two and a half ounces without a single bit of drama!!  Sure made us look like we were making a big deal out of nothing!!  Either way, when we got home, our feeding issues had not gone away.  That is…until Sunday.

On Sunday, Chad and I figured out exactly where Gabriel likes the nipple of the bottle, how deep, and at just what angle.  It was like a totally different experience!!  Don’t get me wrong – there is still drama.  He will typically fight, cry, and scream for 5-10 minutes before he settles down to eat, but at least I am not having to squirt formula in his mouth anymore!  Additionally, at his first feeding today, he took five ounces and six at the second feeding!!!  Almost back to normal!  It’s kind of too bad he will be having another surgery soon where we will have to spend at least another week re-teaching him how to eat again.

Now that the madness is behind us (knock on wood), we can all get back to enjoying our new baby and each other.  Chad is feeling good.  I am feeling good.  Gabriel has a full belly and Ethan gets to hear less crying!  Last week is already starting to fade into a memory that feels much like a dream.

With that, I just want to take a moment to thank everyone for your thoughts and prayers.  I was overwhelmed by the support and concern expressed by many.  I was also overwhelmed by those of you who bravely told me your stories.  I can say honestly that you are all pillars of strength and that your pillars helped to hold my pillars up.  Your courage and experience has made me stronger and I do not take that for granted.  While I received many, many messages of hope and prayer, I would like to share with you something that one of our very good friends sent me.  It was so beautiful and came at a time when I desperately needed it. 

Also, I have included a picture of the Latham Device below.  Please excuse the white – formula gets stuck in the device (hence the cleanings).  And one more thing – for those of you wondering how Gabriel deals with the turning of the screw – he really doesn’t mind it at all!!  The only thing that bothers him is that I have to hold his head still so I don’t slip.  You will see in the picture, the screw is set back really far and I have long screwdriver I have to stick into his mouth to reach the screw. 

Wish us luck on continued success!!  I am off to take a nap!

A message from our friend:

“A few words that have rattled around my head lately that I hope will be a strength for you right now:
There is something in a name. Parents are often led to name a child in a way that speaks to the future personality, life, and role of the child. Ethan, for example, means "strong and impetuous." Never has a child been given a more fitting name. Chad is Welsh for "Protector, defender" with roots that imply "warring or battling." Again, dead ringer. Jessica is a derivation of Ischa, itself either a derivation of the male Hebrew name Isaac, or "Laughing One," or a diminutive of Israel, meaning "God Contended," a name given to Jacob after he wrestled with an angel of the Lord, and to whom all blessings were poured out upon him and his line.

Gabriel, with its roots in Gavriel, means, depending on context, either "The Might of God," "God is my Might," or "The Mighty One of God." Names don't always speak to who we are, but who we will be. I have faith in The Mighty One of God, even if right now he is a tiny thing struggling against a host of things. I also have faith in the Warring Protector, and that sometimes blessings don't always come until we have wrestled all night with the things God has sent to contend with us, when we can resume our smiling and laughing.” 

The Latham Device

My Boys (Pretty sure Ethan was enjoying this moment more than Gabriel!!)

Failure is not an option

I know I don’t usually update our blog so soon after just posting an update, but I can feel myself shutting down, so I thought I better start writing to try and get the agony out of me.

We are six days post-op and things are still not going well.  Gabriel cries for hours at a time.  It can’t be pain because I am managing his pain meds well – alternating Ibuprofen and Tylenol every three hours.  The only thing it can be is hunger.  Before he had the device put in, Gabriel was eating 5-6 ounces of formula every 3-4 hours.  Now I have to force feed him because, most of the time, he still refuses to eat.  I am squirting formula into his mouth every 2½ to 3 hours.  Usually, I can get 3 ounces in him before he is completely hysterical.  Other times I am lucky if I can get 1 or 2 ounces in him.  I am concerned he is going to start losing weight if I can’t get him to eat.  Worse than that, yesterday we had a very good day.  He actually ate with minimal drama all day.  He also slept all day – possibly catching up on the prior five days of no/poor sleep.  Today, we are back to me squirting formula into his mouth.

Chad is not handling all of this very well.  He will likely be upset with me for sharing this, but it is all part of the story – and the stress.  He feels completely defeated since he can’t get the baby to eat.  He worries that we are starving Gabriel.  When the baby is in the middle of a 4-5 hour hysteria, Chad shuts down and runs away to hide in the basement, leaving me to try and figure out what to do.  I mistook this as anger with the baby the first time it happened, but really it’s the loss and frustration of not knowing how to make our baby feel better.

The other night, after working a 12 hour shift, Chad came home at 7:45 to a crying fit that had been going on since 5:00.  He sat down, put his head in his hands and I sent him away.  At 11:00 when the crying stopped and the baby finally went to sleep, Chad returned.  He told me it was ok for me to hate him.  I said that was good because honestly, that was what I was feeling at the time.  He didn’t know that while he hid downstairs I was holding our baby and crying my eyes out with him.  Chad’s response to my ‘good’ was to tell me that he hated the people who did this to our son.  I told him, the people who did this to our son, is us. 

And that’s where I am now.  In the land of hopeless defeat.  A land full of sadness and guilt.  A land of anger and pain.  A land I can’t escape from.  We made this child.  We gave him life.  It was something in us that did this to him.  We built this land.

I know we did what we had to do by having the Latham Device put in.  Gabriel can’t go through life with the clefts; they had to be fixed.  But now I am back to wondering why this had to happen to him.  He is just a baby.  His life is not supposed to be hard.  He’s supposed to cry because he is hungry, tired, or needs a new diaper.  He is not supposed to cry because his mouth hurts, he has a huge foreign object in his mouth, or every time he’s hungry he can’t get the bottle to work in his mouth.

I am so envious of people who have babies that are ‘normal.’  Babies where you can just pop a bottle or pacifier in their mouth and they know just what to do.  This is not a life I would ever choose for my son; and yet, it is a life we have been forced into.  I have been crying a lot lately.  I figure if I keep crying, God will finally take me seriously and decide it’s time to help. 

I want all of this to be over.  I want my son to be his usual happy self who only cries when he’s hungry.  Sadly, I hope that the Latham Device moves everything in his mouth faster than expected so we can get it out.  I say sadly because when that happens, we go into surgery again.  Makes me wonder if all of these struggles will just happen again.

I feel like such a failure as a parent.  I cannot provide the basic needs my child has.  Even poor Ethan is feeling the effects of this.  Gabriel requires so much time and energy; I have nothing left to give him.  It all just doesn't seem fair.  I realize that failure is not an option, but right now – in this moment – I think that maybe…it is.

Oh, the drama

What a crazy experience this has been!!  Gabriel had his first surgery on Friday, January 20^th.  The purpose of this surgery was to put tubes in his ears and implant the Latham Device which will pull together the gaps in the palate and put Frank back where he belongs.  Let me tell you about how all of this went down.

My plans for Friday morning worked perfectly.  I fed Gabriel 6 ounces of formula one last time at 10:30 pm Thursday night.  He was back asleep by 10:50 pm and slept until 3:45 am.  I was up by 3:00 am getting some final things packed, so 3:45 am was just right!  We loaded him up into the car and left for Fort Wayne at 4:00 am.  Gabriel slept most of the way – he woke up and cried a little twice, but neither time was for very long.  We arrived at the hospital around 4:45 am, 15 minutes prior to our scheduled arrival time.  I took Gabriel in, registered, waited, and then was called back to pre-op.  He didn’t cry the entire time we were waiting for his surgery to begin!!  I held the pacifier in his mouth most of the time, but even when I took it out, he just laid in the crib looking around.  Quite different than what we were expecting!!! 

The ENT doctor, the orthodontist (who constructed and implanted the device), and the anesthesiologist all came back to talk with us.  I feel a little bad because I harassed the anesthesiologist by questioning how much experience he had working with infants.  I suppose it wasn’t necessary, but since his job was what worried me the most, I felt like they were questions worth asking.  At 6:30 am, they wheeled our baby off to surgery.  Surprisingly, I didn’t cry at all – but, I did virtually run in the other direction when they wheeled him away so as to not have to watch him go or hear him cry.

The ENT doctor came out around 7:10 am to tell us that his part was over and that things were going well.  Interestingly, he did say that Gabriel had fluid in both ears – so I guess tubes were a great idea!!  Gabriel also had what everyone is assuming was a hemangioma (abnormal buildup of blood vessels in the skin or internal organs) on his septum going back into his mouth, so the ENT doc biopsied it and sent it off to be tested.  We are assuming it was from bottle nipples rubbing against that spot and that the testing should not reveal anything otherwise.  This was the time the long wait would begin.

Finally, around 9:00 am, Dr. W came out to talk with us – surgery was over.  He said that everything went well and showed us pictures of both the Latham Device in Gabriel’s mouth and the location where the hemangioma was removed.  Let me just say now – we were shocked at the size of the Latham Device!!  Such a small mouth with now such a huge appliance in it.  Dr. W did say that he is concerned about there not being any separation between Gabriel’s tiny upper lip and his nose, so he took another impression and will be constructing an additional part to add to the Latham Device which will hopefully stretch out the tissue to give the plastic surgeon a little more to work with.  He will be adding this addition Wednesday night when I take Gabriel in for his first adjustment and cleaning.  I am afraid that it will have to attach to the outside of Gabriel’s face, now giving him something external for people to stare at and for him to be drawn to with his curious little hands.  So far we have not had to put arm restraints on him and I would really like to keep it that way!

We were also told that we would have to begin tightening the screw in the device starting Monday.  We have to turn it ½ a rotation in the morning and ½ in the evening on Day 1.  Day 2, we will turn it ¼ of a rotation in the morning and ¼ in the evening.  We will then repeat Day 1 and Day 2 until the screw no longer tightens.  The plan then will be to remove the device and Dr. S will schedule the second surgery to repair the gum line and do the preliminary lip repair.  We are assuming he will possibly close up the lips going into the nostrils at that time, but this is our assumption and we have no evidence yet whether or not we are assuming correctly.

Anyway, back to surgery day.  Gabriel was taken to the Pediatric Intensive Care Unit (PICU) – not because anything was wrong, but because they wanted him to have one-on-one attention.  We were asked to rush to the PICU.  Upon our arrival, Gabriel was hysterical and the nurses asked if we had special bottles because they were certain he was hungry.  *Here is a little background information – I packed two bags for Gabriel.  One bag (our usual diaper bag) had diapers and clothes in it.  The other had our usual Dr. Brown bottles and our prior Pigeon Bottles – as we didn’t know which bottle would work best with the Latham Device.  Chad ran quickly to the car to retrieve the bottles, but when he got back to the PICU, he had the wrong bag.  Needless to say, when I told him he brought the wrong bag, he cursed at me and ran back out to get the other bag.  I suppose, in hindsight, I probably should have told him how I packed; however, in my defense, I assumed that if he saw two diaper bags, he would bring both.  Anyhow, for those who know Chad, he is still bitter about this – so at least you will understand when he starts complaining about me!!

The first several feedings were complete nightmares.  Here was this poor child who just came out from under 2½ hours worth of anesthesia, had his mouth numbed, had a bizarre – enormous contraption in his mouth, IV’s and monitors stuck all over his body, and was in a strange place with strange faces poking and prodding him.  All I wanted was to go back in time one day to when feeding was easier.  We had worked so hard to get him eating well and now it seemed we were back at square one.

By 5:00 pm, I finally got him to drink 4 ounces of formula.  The method I used was slightly unorthodox – I had to put the nipple of the Dr. Brown bottle between his gums on the left side of his mouth.  He would basically chew the nipple and drink the formula.  Unfortunately, this caused him to choke repeatedly.  We were so lost about how to feed him.  All along, everyone had been saying it would be so much easier feeding him with the device in place, but things were bad.  I really thought I was told prior to him being born that I was to put the nipple under the bar in the back of the device – but no nipple could fit between the bar and his tongue – even the Dr. Brown nipple, which is extremely soft and flexible.  Additionally, he could no longer suck on his pacifier – which still plagues us.

That night in the hospital proved to be far worse for Chad and I than it was for Gabriel.  He slept most of the time – except for when the nurse would come in to give him his pain medicine.  She was so afraid of him choking that she would squirt the medicine into his mouth one drop at a time.  Needless to say, this really pissed him off.  When I give him medicine, I aim at the side of his mouth and deliver the medicine in two big squirts.  He doesn’t like the medicine any better that way, but at least the torture is over much faster.

In the PICU room, we had two very uncomfortable chairs to sleep in.  We had no blankets, so we both used our coats as blankets to keep warm.  One of the most inconvenient thing about the PICU was there were no restrooms in our room – so we had to share one restroom with everyone in the PICU.  It was a lot like being back in college living in a dorm.  Except that in a dorm, you have a restroom with multiple stalls – in the PICU unit, there was one restroom with one toilet – no stalls.  Ugh!  I don’t look forward to being in the PICU again after his next surgeries.

In the morning, the on-call doctor came in and checked Gabriel out.  He then authorized the removal of the IV and our release.  By noon, we were finally on our way home.  It felt like we had been there days instead of just one night.

Our first night at home could not have possibly been worse.  Gabriel was completely inconsolable from 5:30 pm until 10:30 pm.  We tried feeding him.  We changed his diaper.  We gave him his Ibuprofen and Tylenol.  There was nothing else we could identify as wrong.  Before his surgery, he only cried when he was hungry, so this madness was so not like him.  Chad wanted to take him to the hospital but, without a fever or any sign of infection, I deduced that it just came down to discomfort and exhaustion.  He finally crashed at 10:30 pm and I put him in his crib.  He woke at 12:45 am and actually ate really well without any drama!  I thought the bad was finally over and we were headed in the right direction.  I was wrong.

He woke every hour from there and would eat no more than an ounce at a time.  By 5:50 am, I gave up and put him in his swing hoping that would help him sleep longer than an hour.  This is where Day 2 of being home begins.  He woke at 9:30 am and had such a drama filled feeding that I felt horribly defeated.  I have been scouring the internet looking for tips on how to feed this poor child without making him scream.  So far, nothing.  Most people say it took their children anywhere from one week to three weeks to relearn how to eat.  I guess we’ll just have to keep trying and hope we find the magic switch soon to make all this bad turn to good.

I have many more things I could write about, but given the length of this post, I will wait and update all of you after our visit with Dr. W on Wednesday.  I have included some pictures of Gabriel in the hospital.  Such a sweet boy – even with all the pain, he still managed a few smiles!  Wish me luck turning the screw tomorrow!!

Sad Baby

Happy Baby



Surgery #1 is Tomorrow

Well, tomorrow is the big day – surgery #1.  Surgery starts at 7:00 AM.  We have to be there by 5:00 AM, so we have to leave our house no later than 4:00 AM.  Gabriel can have formula until 11:00 PM tonight, and water until 1:00 AM.  Needless to say, it’s going to be a long night and very long day tomorrow.

To give you an idea of how this surgery will go, here are the details:

Dr. S will start by putting tubes in Gabriel’s ears – this should take 5–10 minutes.  Then, radiology will take some scans of Gabriel’s mouth.  Dr. W will then implant the Latham Device – this should take 45 minutes to an hour.  Radiology will then take another set of scans to make sure the pins are where they belong.  If all looks good, surgery will be over.  The entire process should take somewhere close to an hour and a half.

I am not sure I can accurately put into words what I am feeling these 24 hours before everything begins, but I will try.

Fear – My children are my heart, so it literally feels like I am preparing for my heart to be cut in half and placed on a table.  I don’t want to see him wheeled away from me.  I don’t want to see him with any tubes or IV’s in his tiny arms.  I don’t want to see him being poked and prodded by nurses and doctors.  I am terrified that we won’t be able to calm him.  I fear it may be awhile before I see his beautiful smile again.   I’m afraid of what the device will look like in his mouth.  I fear that I won’t have the emotional strength to tighten the screw in it every day.  I fear the worst, even though logically I know I shouldn’t.

Sadness – I am so sad that my 7 week old Gabriel has to go through this.    I am sad for the child who lives a simple life with little to no drama who will have his world turned upside down in 24 hours. 

I hate that fear and sadness turn into anger. 

Anger – I hate that he has to feel pain.  I hate that he won’t understand why he can’t eat overnight tonight or what this new thing is in his mouth tomorrow.  I hate that this is surgery #1 in a long year – or more – of surgeries.  I hate that starting now, the madness of being tortured by doctors on a weekly basis begins.  I hate that everyone keeps telling me that he is not going to remember all of this.  I understand that – I really do.  Unfortunately, I will remember this.  His pain is my pain.  His tears are mine.

Relief – As confusing as it is, I am truly relieved that step 1 of the repair has finally arrived.  As much as I wish it wasn’t necessary, I am eager to just get going on this so I don’t have to continue worrying about the future.  The future is now.

Hope – I am hopeful this will make eating easier for him.  I am hopeful future surgeries won’t affect me as much; thus not adding stress to his life.  Perhaps he will be able to breathe better or sneeze less.  Perhaps he will start to have less gas!!!  I am hopeful for all of these.

I am putting my entire faith in God and strangers that they will take care of my baby – this is very hard for me.  When I think about the surgery itself, I can’t breathe.  I look at my son now and want to cradle him in my arms and run away as far and as fast as I can. 

I pray the surgery goes well, the recovery is quick, and the pain is minimal.  I pray he eats like a champ as soon as he wakes and doesn’t notice a difference with the device in place.  I ask my readers, who pray every night, that you include my son in your prayers tonight as well.

So you are aware, I have decided the best way to help you all understand the progress that is made as a result of the Latham Device, is to take pictures weekly of Frank (the premaxilla) from a profile prospective.  This will provide the most visibly obvious progress.  Today I am including a picture of Gabriel’s palate (without the device) and the starting profile picture of Frank.  Hopefully I will be able to share a picture of Gabriel’s palate with the device after the surgery so you can see the medieval torture device-like appliance my son will be living with for the next 3–5 months!

Wish us luck!  I will provide an update soon!

Palate Before Latham Device Surgery (This is the best pic I have so far)

Frank Before Latham Device Surgery (Sorry it's fuzzy)

Smily Picture - Because I Just Can't Resist!!!



Cha-Cha-Cha-Changes

As Gabriel’s first surgery approaches, I have been thinking a lot lately about how things are going to really start changing.  This surgery is the first step in giving our baby a new look and that has me pondering the things I will miss, not miss, and look forward to after this year’s surgeries.  As a preface to what you are about to read, you should know that in the Hillegass house, we affectionately refer to Gabriel’s protruding premaxilla as ‘Frank.’  First of all, we found calling it Frank was easier than using technical terms, such as premaxilla or alveolar ridge.  Second of all, it seems that Frank often has a personality all his own, so he might as well have a name to go with it!

First things first – the things I will not miss once Gabriel has had his first year’s surgeries:

1.  The Worry – this is a no brainer.  I am tired of worrying about surgeries, pain, complications, and everything that goes with having a child with BLCLP.

2.  Feeding Drama – while we have come a long way with feeding Gabriel, there is rarely a time when we feed him without drama of some kind.  We have decided to change bottles recently – switching from Pigeon Feeders to Dr. Brown’s.  Pigeon Feeders have a nipple on them that is hard on one side and soft on the other.  You have to always make sure the hard side is pointing up towards the roof of the mouth so that it can take the place of the roof – giving the baby something to press their tongue against when suckling.  These bottles are made in Japan, they are expensive, they are hard to come by, and they are hard to use.  Dr. Brown’s, on the other hand, can be bought in any store.  The only stipulations to using Dr. Brown’s are that 1) we have to use the one-way valve that goes in the Pigeon nipples with them and 2) we have to use the Y-cut nipples only as they have a fast enough flow to assist with the feedings.  Because we have to have a faster flowing nipple, Gabriel chokes frequently – hence the drama.  He also has to be fed upright and burped often since he sucks in a lot of air because his lips can’t close around the nipple. 

3.  Frank Cleanings – in addition to feeding drama every three hours, we have to clean Frank after every feeding to remove excess formula and snot (sorry, it’s the truth – without anything between the nose and mouth, there is nowhere for snot to go).  Gabriel hates this and I tend to cause him to bleed nearly every time I try to clean him up.  Makes me feel just awful!!!

4.  Doctor’s Appointments – so tired of the only time we go on outings is to go visit another doctor.  Unfortunately, we will probably be going to doctor’s appointments on a regular basis until Gabriel is four or five years old.  But someday I will have the opportunity to miss them!!!

Secondly - the things I will miss when Gabriel’s surgeries this year are complete:

1.  His Face as It is Today – I have grown accustomed to his face – Frank and all!!

2.  Purring – at night when I am feeding Gabriel, he gets this collection of formula stuck up in the palate clefts that makes a sort of purring sound when he sleeps.  It’s like having a cat – I think perhaps he’s really happy because he’s purring!!!!  Plus, I have the added bonus of not having to hover over him to make sure he’s still breathing – I could hear him from a mile away!

3.  Wide Smiles – you’ve seen the pictures – those super wide smiles are impossible to resist!!!!

4.  The Funny Faces – Gabriel makes such funny faces that I just know I am going to miss and hope to not forget.  For instance, sometimes he looks like he is trying to do an Elvis lip curl, but without a top lip, only this tiny portion of what lip is there rises up!!  Then there’s the lower lip quiver – it is so pronounced because it is the only lip he really has – I know he’s sad when he does it, but I can’t help but chuckle when I see it!!!  Lastly is the tongue sticking out – he tends to sleep with his tongue poking through the clefts in his lips – I will surely miss that!!!

And lastly, the things I look forward to the most:

1.  Two Lip Kisses – I can’t wait to see him pucker up!!!

2.  Mama – Chad and I were talking the other day and he said he was certain Gabriel’s first word would be Dada.  I said it would be Mama.  Then it dawned on me, saying Mama requires two lips.  Go ahead – try and say it without use of your lips – you can’t.  Made me sad…

3.  Raspberries – blowing raspberries is one of the first things babies do – ours won’t without lips.

4.  A New Smile – while I will miss the old face, I am positive I will love the new face as much and can’t wait to see his new smile!     

So there you have it – some things I will miss and some things – not so much.  What I do know, is that it is time to get ready for some serious cha-cha-cha-changes!!!!

First Surgery Has Been Set

First of all, let me just mention that blogging with an infant is extremely hard.  Seems like every time I sit down to write, he’s hungry, tired, needs a diaper change, cranky, lonely, or all of the aforementioned infant complaints.  So, in advance I apologize if the length of my posts is not to your liking or if the information contained in said posts does not leave you satisfied.  I am sure things will improve with time.

Big news – Gabriel is already one month old!!!  WOW!  That went fast!!!  In this month, we have had our first real smile and our first real tears.  In fact, Gabriel smiles for his dad and big brother all the time.  Not for mom though.  E was the same.  I guess they look at me as the feeder, changer, and rocker and not the super fun person that makes faces at them all the time.  We’re working on that.   He’s also working on finding his voice.  My sister gave him a play mat for Christmas that has a little green planet that sways overhead with the music.  He seems to have taken a liking to that planet because he works hard to swipe his hand at it and try to talk to it every now and then!!

Since the last update, we have met with the Ear, Nose, and Throat doctor.  He was lovely.  We worked through him to schedule Gabriel’s first surgery.  Surgery will take place the morning of January 20^th at a hospital that is 45 minutes from our house.  This surgery is when the Latham Device will be implanted and the ENT doc will put tubes in Gabriel’s ears.  While his hearing is considered normal at this time, all cleft babies get tubes because of the amount of ear infections they are prone to having.  The surgery will take approximately an hour and require at least one night’s stay in the hospital.  Because Gabriel will be asleep for the surgery, he cannot have anything to eat or drink after midnight the night before!!!  We are preparing ourselves for the longest night ever and the longest drive anyone could possibly have when heading to the hospital.

In preparation for the surgery, Gabriel has to have impressions taken of the roof of his mouth so Dr.  W can construct his custom fit Latham Device.  Yes, these are the same impressions you might have had if you ever had braces.  A gooey mold – that you try not to choke on – is pressed into the roof of the mouth to harden and capture all the grooves and open sections.  Gabriel’s first set of impressions was done yesterday.  Chad and I had to wait in the waiting room while they took him back.  I sat and listened to my little man cry while trying to bury my emotions in a magazine.  Chad went outside.  They said Gabriel did really well – only cried when they were actually in his mouth – but it still sounded like baby torture to me.  We have to go back on Friday for another set of impressions.  I figure Gabriel will start crying at the mere sight of Dr. W in the near future!!

Other things going on – we had a great Christmas as parents of two boys!!  Certainly we expect next year to be even greater as Gabriel might actually have a clue about what is going on around him!  New Year’s Eve came and went.  In fact, it wasn’t until the middle of the day when Chad and I actually remembered that it was New Year’s Eve.  No one in our house was awake at midnight, and when you have an infant, that’s actually a good thing.

In other news, I have started to annoy myself lately.  On two separate occasions, we have run into people in public who know us, but did not know Gabriel was going to be born with BLCLP.  On both occasions when the person was looking at him, I made a point to tell them, ‘As you can see, he was born with bilateral cleft lip and palate.’  Why is this so annoying?  Because they didn’t ask.  They didn’t even act like there was anything different about him, but I felt like it needed to be said.  Perhaps I did this because I didn’t want them wondering what was wrong with him.  Maybe I didn’t want them telling their friends that something was wrong with him.  Truth is - the only person there is something wrong with is me.  Apparently in all my preparation, I didn’t bother to force myself to not care what people may or may not be thinking.  I honestly thought I did, but when faced with the situation, I failed.  I get anxious when we are sitting in doctor’s offices and people are staring at him – especially other children.  I get anxious before we take him to the store because I don’t know who we might run into.  I am not ashamed of my child.  Let me make that clear – I am NOT ashamed of my child.  I am just a mother who is fiercely protective of her children’s bodies and minds – so much so that I blurt out things about them that no one is asking.  I guess I need to keep working on that.

Chad goes back to work this week.  I will now officially be on my own.  Truth be told, I kind of wish I was going back to work also.  It would be nice to be back doing something I know I am actually good at.  Parenting is hard.  I just want all the stay-at-home parents out there to know that I appreciate and respect what you do and will be thinking about you in the near future when I head back to work full-time! 

Here are some pictures for your enjoyment!!  By the way, I am trying to get a picture of the roof of Gabriel’s mouth, but it seems the only time I can see it is when he is crying – and it just seems wrong to take a picture of him then!!

I love wide smiles!!!

The boys on Christmas Eve



Worn out after church on Christmas Eve



Talking to his friend - the little green planet!