Let me check my schedule

What a crazy week it has been.  We are starting to understand our reality now - nothing but doctor’s appointments, stressful feedings, and constant worry.  I am not complaining though.  Luckily we have been blessed with the most adorable boys who make our lives so complete, the bad just manages to melt away with all the good.  But let me explain our reality issues.  Here is what has been going on as far as appointments are concerned.  (Some of these you might already know about if you have read my previous posts.)

·         Tuesday, December 6, 2011, 9:30 am – 1^st appointment with the pediatrician – lost 2 oz – weight 9 lbs. 10 oz.

·         Friday, December 9, 2011, 9:45 am – ECHO – results were good!!!  No heart problems!!!!!  HOORAY!!!

·         Friday, December 9, 2011, 12:00 pm – weight check at pediatrician’s office – gained 2 oz – weight 9 lbs. 12 oz.

·         Monday, December 12, 2011, 12:30 pm – newborn pictures (not a doctor’s appointment, but an appointment nonetheless)

·         Monday, December 12, 2011, 5:45 pm – met Dr. W, the orthodontist who will construct the Latham Device.  At this appointment, we met another couple who have a 4 month old son with the Latham Device already in.  Their son (whom they were not allowed to be with during the appointment) was crying and screaming so loudly from another part of the office that I had to forcibly stop myself from crying thinking about Gabriel in his place.  We found out that not only will we have to tighten the screw in the Device daily, but we also have to take him to see Dr. W and Dr. S (the plastic surgeon) weekly so that Dr. W can clean and tighten the chain in the Device.  The good part is (if there is a good part), that when we saw the other couple’s child, his premaxilla was exactly where it belonged and was not protruding at all.  Dr. S pointed out that his premaxilla actually protruded further than Gabriel’s before he had his Latham Device put in - so we have seen evidence that the Device does work.

·         Thursday, December 15, 2011, 10:00 am – two week appointment with the pediatrician – gained 4 oz – weight 10 lbs.  Unfortunately, the pediatrician doesn’t feel that he is gaining enough weight.  He should be back at his birth weight by now.  She is having us come in again next week for another weight check before she will ok for us to not come back until he is two months old.  Not sure what will happen if his weight gain is still below par.  Some people have to add cereal to their baby’s formula to add fat, but our pediatrician has not indicated what she thinks we will have to do.  We decided to go ahead and switch Gabriel from a soy based formula to a milk based formula in hopes that the milk will help fatten him up.  Hard to believe we have to fatten up a 10 lb. 2 week old!!!

·         Tuesday, December 20, 2011, 8:45 am – we have a consultation with the Ear, Nose, and Throat doctor.   Because cleft babies tend to have a tremendous amount of ear infections, Gabriel will have tubes put in his ears during the first surgery where the Latham Device is put in.  It will be up to the ENT to determine when the first surgery can occur.  Most surgeons like to wait until the baby is one month old.  We also still have to have the impressions done so that Dr. W can construct the Latham Device.  We are still thinking it will be in 3 or 4 weeks, but if it were up to me, it would be never.  I can’t stand the thought of my son having surgery.  In fact, just thinking about it makes me feel like I am going to be sick.  But I also know that the clefts have to be fixed.  Life just doesn’t seem fair sometimes.

·         Thursday, December 22, 2011, 9:00 am – another weight check.

That’s a lot of appointments already and we haven’t even gotten to the point where we have weekly appointments with Dr. W and Dr. S.  I am already starting to hate sitting in doctor’s offices.

So how is feeding going, you ask?  Let me tell you.  We will have two really great days of feeding.  No drama.  Intake is great.  Then it’s like Gabriel completely forgets how to eat.  We will then have 2-3 days of him screaming and crying all the time with Chad and I getting so frustrated we just keep passing him off to each other in hopes the other person is successful.  We feel awful like we are somehow failing him.

That brings me to our third issue – constant worry.  I desperately wish we were in a ‘normal’ newborn situation where the worries seem worse than they really are and that every issue passes so quickly you almost forget the issue even existed.  Instead, I worry about his weight, the trauma of stressful feedings, and the upcoming surgeries.  I worry about acid reflux – another issue for babies with cleft.  I worry about whether or not he can hear me.  I wonder if he knows what is going to happen to him.  I worry about how much it is going to hurt. 

All I know is that I just want to hold him close all the time to keep him safe.  I want to keep him from feeling any pain.  I want to make this all go away for him.  But I can’t.  So I guess I’ll just spend my time loving him as much as possible and finding hidden strength to get him through all this.  Now I just have to figure out where to start looking…

Finally - He Has Arrived!!!

I haven’t forgotten you, my faithful readers!  Taking care of a newborn without BLCLP is challenging.  Taking care of a newborn with BLCLP has seemed nearly impossible at times!  Side note:  I apologize in advance if my writing in this update is not up to the same standards as my previous updates.  Sleep deprivation is brutal. 

Let’s just take a step back and rewind a couple of days.

Gabriel came into the world on Thursday, December 1^st at 1:15 pm.  He was 21 inches long and a whopping 10 lbs. 5 oz.!!!!!  Another big boy!  Delivery was fine and my beautiful boy was born as healthy as can be!  Great respiratory system, heart sounds good, and he passed his first hearing test!!  All big areas of concern for BLCLP babies.

Having him in the world simply confirmed everything we already knew about the clefts – although they looked much less severe than what we could see in the ultrasound pictures.  But what we found out quickly was that he is gorgeous!!  I know – I am his mom, I am supposed to say that – but really, everyone who has seen him has said the same thing!  It’s so funny that I don’t really even notice the clefts or protruding premaxilla at all.  Sometimes it actually catches me by surprise because I just don’t even remember that they are there.  Of course, when I admitted this to my family, I got a whole bunch of ‘I told you so’s.’

The one time we do remember they are there is at feeding time.  The first bottle we tried was the Haberman feeder.  Didn’t work so well for us.  The first night in the hospital, we managed to only get 7 mL in him – not even close to good enough.  The Speech Pathologist, who we will forever call Saint Laura, came back into the hospital on her time off to help us feed him the second time.  For the second time, we switched to the Pigeon feeder and had greater success.  He took 40 mL when Saint Laura was with us – a big improvement!!!!  Unfortunately, it wasn’t lasting.  Because Saint Laura was off for the weekend, the next couple of days, we were on our own.

When the nurses took care of him in the nursery, he took 40 mL every time he ate.  When he spent his days with us, he only ever took 20 mL at a time.  By Saturday night, we were so frustrated and discouraged that I spent my first – and sadly not last - night in tears.  The nurses in the nursery gave me some tips to try and by Sunday, we were headed home.

The first 24 hours might have been the longest and most difficult of our entire lives.  Feedings were going so poorly, we were scouring the internet and Chad was off to Wal-Mart at 2 am to get supplies.  We tried everything, but could not get Gabriel to just calm down and eat.  By morning, we called the new pediatrician’s office and told them we just didn’t know what to do.  Gabriel had to go to the doctor 2-3 days after being discharged from the hospital anyhow, so they scheduled an appointment for us at 9:30 yesterday morning.

We met with Dr. Lindsay – the new pediatrician for both boys.  She is very lovely.  She didn’t even seem to mind when I fell apart and was crying in her office!!  She was not concerned with the amount he was eating or the fact that he has continued to lose weight after leaving the hospital – he now weighs 9 lbs. 10 oz.  What she was concerned with is that we haven’t had any connection with a feeding specialist, our plastic surgeon, or the orthodontist who will be constructing and implanting the Latham device, since Gabriel’s arrival into the world.  So she took it upon herself to reach out to all of them to set up appointments for us for all the next step activities.  Additionally, she set up our appointment for the ECHO that needs to be done and scheduled a weight check on Friday for my peace of mind.  We felt much better after meeting with her.

Now, you just read earlier that Gabriel’s heart sounds good but that he also has an ECHO scheduled – I am sure you are now confused.  While we don’t have any reason to believe or even think there is anything wrong with his heart, the rule is to be thorough in checking everything when dealing with a child with cleft palate.  The reason being, the BLCLP is what is called a mid-line abnormality, so anything that runs down the body in the same mid-line (middle of the body), needs to be looked at closely to ensure there are no other impacts.  The heart falls in that mid-line, so therefore, the doctors are just being thorough.  Either way, that happens on Friday morning at 9:45, so I will be sure to fill you in after that experience.

Now, as far as where we are today – the last 24 hours have gone very well.  Gabriel might actually be figuring out this whole feeding thing, although I am hesitant to put that in writing just in case I just jinxed us!!!  I am sincerely hoping that when we go in for our weight check on Friday that we actually see a gain!  I am trying to fatten this boy up!!!  He has a lot of surgeries coming and needs all the extra chubbiness he can get!! 

Sorry this post is so long.  I will try to write sooner next time so you don’t have to read so much.  By the way, check out the pictures of the newest love of our lives!!  I feel so complete!!  Chat soon!!

P.S. – I just wanted to officially put in writing that my husband has been an outstanding support and help through all of this.  I feel so blessed to have him on our side.  Even though he constantly complains about my snoring…

My boys - how I love them!!

Daddy and Gabriel 

Sweet baby Gabriel

Twenty, twenty, twenty-four hours to go...

And I can guarantee I'll want to be sedated!!!  Tomorrow at 12:30, my C-Section will begin and Gabriel will join us in the outside world!!!  Now, I realize I shouldn't be terrified of this, but it seems I am.  Chad reminds me that this is not my first C-Section, so I shouldn't be scared, but last time was not like this.

Five years ago, I went to the doctor for an appointment one week after my due date with Ethan.  He told me that day I would be heading to the hospital that evening to be induced - ok, no time to get nervous.  Then, after twenty-three very long hours of constant contractions, the doctor said he was too big to come out the normal way and we would be doing a C-Section.  Within fifteen minutes of that decision, I was on the table in the OR - ok, again, no time to get nervous.  This time I have known I would have a C-Section since my first appointment at eleven weeks pregnant - hence, lots of time to get nervous!!

My C-Section with Ethan was not a pleasant experience.  First of all, the anesthesiologist announced when he came into the room that it was his first day on the job!  Who admits that?!?!?!  Secondly, I apparently didn't take to the epidural well, because even my doctor admitted the next day that I felt more than I was supposed to.  It's funny how people always say you forget the pain after you see your beautiful baby.  This is a lie.  You never forget the pain; you just decide that it is worth going through again.  So that is what I am focusing on.  This time I am having a spinal block - which I am afraid of - but if it works better than my epidural, I really can't complain.

In addition to just the normal surgery nerves, I am - of course - nervous about finally finding out all those unknowns about our Gabriel.  Is everything else really ok?  How badly is the palate impacted?  How does he really look?  Were the ultrasounds right?  Will he be able to eat?  Will he be put in the NICU?  Will he get to come home with me?  Can I really do this?  Have I mustered enough strength yet?  What will Ethan think?  What will Ethan say?  What will everyone else say?  Sheesh, no wonder I can't sleep anymore.

Truth is - he is going to be my beautiful baby - no matter what.  And I honestly don't care what anyone else says - although heed my warning: everyone gets one negative comment free.  Anymore than that, and I will kick you out of our room and disallow you seeing my son.  Even more true is the fact that - just like when I had E - the second I hear him cry, I will know that everything is going to be ok.  I can't wait to share the story with all of you - and pictures too!!!

Wish us luck!!!!

If Only You Believe in Miracles, Baby, So Would I

I have never been a big believer in miracles.  Having never actually witnessed one, I have certainly questioned the reality of their existence.  It’s not like we live in biblical times where everyone was walking around getting cured or brought back to life.  I guess I might be a lot like the kangaroo on Horton Hears a Who – if you can’t see, hear, or feel something – it doesn’t exist.  Well, this week may have changed all that.  Stay with me here.  We are going a little off topic, but this is all a crucial part of our journey.

Someone extremely close to me was diagnosed in February of this year with Stage 4 Colorectal Cancer that had metastasized (or spread) to their liver.  They were deemed incurable and given 2-3 years to live.  It’s important to know that this person (who has asked to remain nameless on the internet) should have another 30 years left if you base life expectancy on that of your family, so 2-3 years was really cutting things short.  While extremely devastated, this person was not defeated and set out for a second opinion.

The second opinion was surprisingly different.  They were told that while it was a long shot, there was a possible chance of a cure through some aggressive chemotherapy and extremely difficult surgeries.  So they would set off on their journey into curable through their first round of chemo.  After a few months of chemo it was time to check the progress.  Devastation set in again when they were told that the cancer appeared to have spread and they were no longer a surgical candidate, thus making them – once again – incurable.  They had switched from ‘curing’ mode to ‘prolonging life’ mode.  They knew what this meant.  Back to 2-3 years…

Well, the doctors decided to try one more thing along with their ‘prolonging life’ chemo.  They did some genetic testing on the tumors and cancer to find a drug that was supposed to be the most effective with this person’s type of cancer.  They were checked again and to everyone’s surprise, this chemo was shrinking the tumors to the point where surgery was actually back on the table!!  Again, they were reminded that it was a long shot, but definitely a possibility. 

So, the first surgery was on.  They had what is called an embolism done to their liver to start with.  The purpose of the embolism was to shut off the blood supply to the bad side of the liver and redirect it to the good side to try and enhance its growth.  While they waited to see if the embolism worked, they underwent radiation to try and tackle the colon tumor.  Much to everyone’s surprise, the embolism did work – increasing liver function by 5-10%, which was all that was needed to remove the tumors from the liver.    

In the beginning of November, this person had an all day surgery to remove the entire right lobe of their liver and a smaller tumor from the left lobe.  All in all, about 60% of their liver was removed.  A couple of days following this very dangerous surgery, they were given the news that all cancer had been successfully removed from their liver!

A couple of days ago, they went in for their post-op appointment.  It was at that time their surgeon indicated that he could no longer locate (through ordinary measures) the tumor in the colon.  It doesn’t mean it’s not there – it just means that it has likely gone from obstructing to nearly obsolete.  They won’t know how much is truly left until they do another exam in a couple weeks, but they have already scheduled the surgery to remove what is left about a week after Gabriel is to arrive.  Once that surgery has been a proven success, this person will officially be cured!!! 

Long story short, I believe there is a distinct possibility I have witnessed my first miracle.  It is truly as if the hand of God has reached down from the heavens to touch this person and make them whole again.  While I am still cautiously optimistic (because of the way things have gone in the past year), I find my faith to be stronger and believe that the possibility of miracles truly does exist.  Perhaps my Gabriel will be spared some of the rotten things that go along with having cleft.  Perhaps he won’t need surgeries past the first year.  Or perhaps, despite all of this, he will be the happiest, healthiest kid I know.  Perhaps we will get our own little miracle for him.   At least now I believe it’s possible.

Oh, boy.

So, yesterday we had our second appointment with Gabriel's plastic surgeon.  Chad was unable to attend, so my sister graciously went along.  All I knew was that I couldn't go by myself.  My mom and I are much the same in that the first thing we hear that is negative - we stop listening altogether.  My sister has always been one of those people who can stifle any emotion to get through the conversation.  An admirable trait really.  At any rate, not likely what you came here to read about!

When we had our first ultrasound around 20 weeks and found out about the clefts, we went to visit the plastic surgeon.  At that time, he indicated that because we had no way to truly know the severity of the clefts, he would outline everything for a worst-case scenario and we would continue to pray for the best.  I knew things were bad on Monday when he outlined the exact same scenario as before - we truly are facing the worst-case scenario where Gabriel's clefts are concerned.

He first confirmed that the clefts are complete and the premaxilla is protruding - this I already knew.  Then we talked about the palate - which again, we are only speculating how severe it is - and based on his experience, he expects that the palate is open in both the hard and soft palate, on both sides of the mouth (which has been confirmed) and that the uvula (the little dangling thing in the back of your throat) is also likely split in half.

The plan of attack at this point is still to implant the Latham Device at 3 weeks old - which he said the screw has to be turned by us once a day!!!!  I thought it was once a week - see, proof I stopped listening the first time.  Between 3 and 5 months old, he will close the gaps in the gums and do a preliminary lip reconstruction.  This will not close the gaps in the lips entirely, but will make the full-blown reconstruction easier.  Said full-blown reconstruction will occur between 9 and 12 months of age.  I know what you are thinking - you have already heard all of this.  How could this be worst-case scenario if all work is done by 1 year old?  Well, that's where the worst in worst-case scenario comes in.

Our surgeon indicated that we should be prepared for Gabriel to have surgeries all the way into his late teen years.  With bilateral babies, there is extra work that always has to be done due to the palate being open in two places.  There will be major orthodontic work that has to happen.  When the premaxilla is protruding (as Gabriel's is), the lower jaw is going to grow at a faster rate than the upper jaw.  So, at some point when his mouth has stopped growing, the lower jaw will be reset to correct this.  Gabriel will also likely have to have a nose job at 17 or 18 years of age.  A nose job!!!!  I was talking to Chad afterwards about how much this upset me because that means he will not have a perfect nose through the hard parts of school and that everyone will know when he has had a nose job.  It's not like we live in LA and give our kids a new nose for their sweet 16!!!!!  Sigh.

Needless to say, I have felt slightly defeated since yesterday.  I don't know what I was expecting to hear.  Chad wasn't at all surprised.  Perhaps it is the eternal optimist in me.  For those of you who know me well, stop laughing...

Funny thing about all this is, my dad went to my niece's school function on Friday and met the father of a 5th grader who had the remnants of a cleft lip.  His dad said he just recently had his 11th surgery!!!!  I told my dad I didn't want to hear anymore.  I am truly not trying to feel sorry about all this.  I am working hard to find my strength.   But as time draws near, I find my fears are killing off every other emotion I have.  I guess it's a good thing I have 2 weeks and a day to get my shit together (as my mom often tells me to do) and remember that I am strong enough to get my son through this.

Coming Soon to a Nursery Near You!

Well, it's official.  My C-Section is scheduled to begin at 12:30 pm on Thursday, December 1st.  Finally, I will get to meet my little Gabriel!!  I could not be more excited - or terrified.  All of a sudden it seems so near.  I am starting to question just how ready I am.  First of all, we haven't put the portable crib together in our bedroom and I have things yet to buy.  Secondly, I have all sorts of questions that run through my head on a daily basis.  Mostly what ifs, but some actually legitimate.  Thankfully we got a call from the plastic surgeon today who wants to meet with us one more time before Gabriel arrives.  That should take care of some of my outstanding questions.  I will elaborate more on that after our appointment on the 14th. 

So, I was reading a post the other day from a 38 year old gentleman who wanted to share with mothers of children with cleft, his first person story of living with cleft lip/palate.  He mentioned trials and tribulations.  He noted that he had several surgeries up until he had his last at 18 years old.  That surgery was to reset his jaw and then have it wired shut for a week.  While I found his story very interesting, there was one thing he said that I just haven't been able to get out of my mind.  He said - your child doesn't blame you, so please don't blame yourself.  I found this amazingly powerful statement to be so captivating, and since I promised myself to share the whole truth with all of you out there, I will tell you why.

The day we first found out about Gabriel's clefts, I spent so much time trying to figure out what I had done wrong.  I won't lie.  I smoked a few cigarettes before I knew I was pregnant.  I also took a medication that 3 doctors said I could take, but I was unsure.  I ate cold deli meat before I knew I was pregnant. I haven't been a perfect person, so I was sure my karma levels were to blame. The list goes on and on.  Then we found out that one of Chad's cousins was born with a cleft lip (no palate involvement).  So great - perhaps it was genetic and I could blame his bloodline - but I didn't.  I silently blamed God and went on strike from praying for a time.  Then I realized I might actually need Him and it was unlikely He would help me out if I were harboring resentment.  But there must be someone to blame, isn't there?

It dawned on me recently that for every rotten thing that has ever happened to me, I have spent a great deal of energy trying to figure out whom I could blame.  Funny thing is, I have a mantra I live by - it is what it is - but honestly, I am quite sure there is someone to blame for it being what it is!  Chad reminds me that there is no one to blame and that we just need to focus on being as strong as we can for our Gabriel, but sadly, I am not convinced.

So that brings me back to whom to blame.  Nearly every night since finding out about what our baby will endure, there is a little voice in my head who wakes me up at 2 am asking, 'what did you do to him?', 'how could you subject him to such torture?', 'how do you fix it now?'.  The truth is - I don't know.  My children are my life.  When they are away from me, it's often hard to breathe.  I swear my heart skips beats because a part of my heart is always with them.  So of course I didn't DO this to him.  How could I?  What kind of mother would I be?

Logically I know that I likely didn't do this to him.  That makes sense.  There are so many reasons (mostly unknown) as to why cleft lip and palate occur - I have stated this before.  But part of me knows that when my baby is going through surgeries, possibly until he is 18 years old, that I will not be satisfied until I sufficiently find someone to blame.  And honestly, if he doesn't blame me, then he is truly a better person than I.

So, there you have it.  I have learned a tremendous amount on this journey so far and I have no doubt that I will be a pillar of strength for my little one.  But I do have my demons to deal with - I wonder who I can blame for that...

Ultrasound said it's a boy!! Oh, wait. We already knew that...

Today Chad and I went to have another ultrasound.  The purpose was 1) to get an idea of Gabriel's size because of my gestational diabetes and 2) to try to see if the palate is impacted by the bilateral clefts.

So, item number 1.  I will be 34 weeks pregnant on Friday.  According to my Baby Center updates, the baby should weigh 4 3/4  pounds.  The ultrasound today declared that Gabriel is measuring 37 weeks and weighs over 6 1/2 pounds!!!  Big baby!!  Probably a good thing I am going to have a scheduled C-Section because our doc told us I should plan on carrying Gabriel until 39 or the full 40 weeks.  I have a feeling I am not going to be able to walk soon!!!  By the way, we had an ultrasound the day I was induced to have Ethan and it declared Ethan to weigh 9 1/2 pounds.  As stated in a previous post, he came out around 11 pounds - so I don't hold much stock in what the ultrasound declares!!

That brings us to item number 2 - the reason you are probably reading this right now.  Well, let me start by stating that everything else about our son is still as perfect as can be - so we are extremely happy about that.  Since we found out at 20 weeks that Gabriel will be born with bilateral cleft lip, we have been hoping for the best while preparing for the worst.  Turns out, the worst is pretty much what we are up against.

The two clefts in the lip are complete, meaning they go all the way up and into the nose.  It appears that the premaxilla (the part of the upper jawline directly below the nose) is protruding and in line with the end of his nose.  This is not terribly uncommon in BLCLP babies, but does make the reconstruction more challenging.  It was also determined today that there are two wide openings in the palate.  This will present more unique challenges where feeding is concerned. 

There are still unknowns though.  For instance, the nostrils appear to be well formed, so hopefully nose reconstruction will not be necessary.  We still don't know how much of the palate is missing.  It could be just the hard palate.  It could be the hard and soft palate with a small part still intact down the middle.  It could be the entire palate all together.  These are things that we will just have to wait until he is born to know for sure.

What I personally know for sure, however, is that our son will have quite a challenging first year, and possibly years beyond that.  But more importantly, when I saw him today in the ultrasound, the only thing I could see was love.  He is so incredibly beautiful and we are so blessed to have been given him as a gift.  I will always wish my Gabriel didn't have to go through all this, but I would never wish him any other way.  He is ours.  The life and the light inside of me and I can't wait to meet him!

Quite the predicament indeed.

Because there hasn't been enough drama in this pregnancy (enter sarcasm here), I am so not happy to announce that about a month ago I was diagnosed with gestational diabetes.  But before I go on about that, let me give you a little background first.

I make big babies.  I weighed 8 pounds 10 ounces when I was born.  My husband weighed in at a whopping 11 pounds 12 ounces (kudos to my mother-in-law for having him naturally)!!!  So, when Ethan came into this world around 11 pounds, I don't suppose I was really surprised.  I say around 11 pounds because after 23 hours of labor, when my doctor decided he wasn't coming out the natural way, I had a C-Section.  Chad saw the nurses put E on the scale and it read 11 pounds 2 ounces.  They said, "that can't be right", messed with some buttons, put him back on and declared him to weigh 10 pounds 10 ounces.  The next morning when the pediatrician came to visit me, he indicated that one of the scales must be wrong because he had E weighing 11 pounds 5 ounces that morning!!!  So, around 11 pounds.

Because of that, I was supposed to have Gabriel a couple weeks early in a scheduled C-Section the week of Thanksgiving.  Then we found out about the clefts.  My doc told me at that time that our best chance of keeping him out of the NICU and having him be able to eat without much issue was to not deliver him until he was full term (40 weeks).  Well, I went 41 weeks with E, so I figured why not?  If it meant less chance for the NICU and possibly not having to worry about my son not coming home the same time as me - I was all for it.

Then came the gestational diabetes.  I had my first appointment with my doc since being diagnosed today.  While I have been doing exceptionally well at keeping my blood sugar under control, there are still many risks that can impact the child of a mother with diabetes.  Some include, respiratory distress, excessive birth weight with larger than average heads and shoulders, hypoglycemia, jaundice, type 2 diabetes later in life, and those we do not speak of.  Because of these risks, my doc would normally deliver these babies at 37 - 40 weeks and not a day over.

So do you see the predicament here?  Either we wait the full 40 weeks for the clefts or we deliver early to reduce the possible risks as a result of the diabetes.  I am putting my trust into a man who I believe will do the best thing for my child, but I do have to wonder what the 'best thing' is.  Either way, I now have to see my doc once a week to keep close tabs on the diabetes, how big Gabriel is getting, and any additional drama that might be thrown our way. 

By the way, when I was pregnant with E, he always measured one week ahead of where he was supposed to.  Gabriel today measures three weeks ahead!!!!  Big baby coming!!!!  I just wish I knew when...   

So what do we call this thing?

Ever since the diagnosis, I have been trying to decide what to call Gabriel's bilateral cleft lip and palate when I try to explain it to people.  By the way, from here on out, I am going to refer to the bilateral cleft lip and palate as BLCLP to simplify.   Anyhow, here is what I have been thinking:

• It is no longer appropriate to call it a hare lip - it is a cleft lip.
• When we first found out, a lot of people called it a birth defect.  I know that technically a birth defect is what it is, but I have a really hard time using the word 'defect' when talking about my child.  The other day I had an apple that when I bit into it, it was black in the center.  This was a defective apple.  I threw it away.  I could never think of my child like that.  Additionally, according to Webster's, the definition of defect is "an imperfection that impairs worth or utility" or "a lack of something necessary for completeness, adequacy, or perfection."  WELL...I have a hard time believing this makes my child worth less or causes him to require something more to be considered perfect.  My Gabriel is perfect in every way to me. 

On a side note, in case you were curious, cleft lip and/or cleft palate is the most common 'birth defect'.  One in 600 babies are born with it.  To put that into perspective, on average there are 10,650 babies born every day in the US and approximately 353,015 born every day world wide.  That means that 18 babies are born every day in the US with cleft lip and/or cleft palate, and 588 are born every day world wide!!  That's pretty huge!

Anyhow, back to my thoughts:

• I was on a chat board recently and someone was complaining because she didn't think her doctor was taking everything seriously enough considering her child was going to be 'deformed' when he was born.  Really?  Ugh.  Deformed should never be used to describe any living person.  Just my opinion.
• I also tried out many other titles for this:  his condition, his issue, his situation.

That's when it dawned on me.  None of these things should be used to describe what is affecting my Gabriel.  The truth is, he is my perfect boy who happens to have BLCLP.  BLCLP does not define him.  It is very important for me to not have anyone I love be defined by anything that is beyond their control.  My husband has a slightly larger than average nose, but that is not who he is.  He is a brilliant man with a wicked sense of humor, not a nose on a face.  I have always had a large ass.  Now, I am not going to lie to you and tell you that people haven't told me I sometimes behave like a large ass - but that still does not define who I am as a person.  No physical attribute will ever be what defines my kids.  They are perfect to me in their own ways - flaws and all.

So, if you see me on the street and ask what is wrong with my Gabriel's face (once he's born, of course), it is likely I will say, 'nothing, why do you ask?' 

Let's start at the very beginning...

So, this is my first time blogging - please be patient with me...


Currently there are 3 members in our family.  Chad: the strong, mostly silent husband of 9 years.  Ethan Michael (aka E): the super funny, a little naughty 5-year old.  And me, Jess.  I could go on for hours about me, but that is not the purpose of this blog!!


On or around December 2nd, we will be adding another member to our family - Gabriel Jude.  We are so very excited!!! E is the most excited, however, because he stated very clearly that if the baby was not a boy, he would be moving to his grandma's and taking the baby to the big city to trade it in.  Thankfully we are having another boy, so the threat of leaving E alone with the baby is not nearly as severe as it could have been!
On July 20th, we had our 20 week ultrasound.  It was confirmed at that time, that while all of Gabriel's vital organs were perfect, he was going to be born with bilateral cleft lip and palate.  Of course, like all mothers, I was completely distraught.  I spent 2 days crying and wondering what I did wrong to cause our son to have challenges in his life he just didn't deserve to have.  My mom called me on day 2 of crying and told me to get my shit together because I was strong enough to handle this.  And she's right.  I don't like it.  I don't understand it.  But I will get him through it.


So, by now you may be wondering exactly what a bilateral cleft lip and palate is and what is done for such a thing.  Between the first 5 and 8 weeks of baby's development, his lips and palate (the roof of his mouth) are formed.  Sometimes something happens in that process that causes the baby's lips and palate to not fuse together.  There are several kinds of cleft lip and palate, including unilateral (one opening) and bilateral (two openings); incomplete (does not go into the nose) and complete (the nose is impacted also).  At this point, we don't know if Gabriel's clefts are complete or incomplete and we don't know how much of the palate is involved.  Could be just the hard palate, could be just the soft palate, could be the entire palate.  While ultrasounds are amazing at detecting these conditions, they are not great at giving the full details - so we will have to wait until Gabriel is born to know how severe the clefts are.  Since we don't know, we are proceeding as if the situation is the worst it could be - but praying for the best.


We met with Gabriel's plastic surgeon a week after diagnosis to discuss the plans for how to deal with this.  He seems great - a lot like a surgeon, but has a very big heart for cleft kids.  Plus, 2 nurses and my OB have all used the word 'brilliant' to describe him, so how can we go wrong?!  During our meeting with him, we discussed what will happen in the event the palate is impacted:


Immediately after his birth an orthodontic surgeon will make a mold of his mouth so that he may custom make him a Latham Device (Google this if you are  curious – it looks a little like a medieval torture device) - I will certainly post pictures of this when the time comes.  He will also have an Echo done to make sure his heart is ok, his hearing tested to make sure he can hear, and probably all sorts of other tests to rule out any other issues (which we don’t anticipate any based on the ultrasounds, but it is better to be safe).  Often, cleft is a symptom of another syndrome, so they need to be sure everything checks out OK.  He may or may not be in the NICU at this time - a lot of that depends on whether or not we can feed him with a bottle.  There are special bottles for cleft babies.  They are very expensive, but basically take the need for sucking out - since the baby will not likely be able to suck at all.  And yes, you guessed it - that means that breastfeeding is not an option.


At 3 weeks old, the Latham device will be implanted.  This device will try to get the palate as much back together as possible to make the reconstruction surgery easier.  We have to tighten a screw in this device once a week – which my husband has already declared that he and Ethan will just happen to be busy every time that needs to occur!  Lucky me.

At approximately 3-5 months old, he will have his gum line reconstructed.  This will involve a bone graft as there will likely be two spaces in his gums that are open as well.  In case you are curious as to where the bones come from for the grafting, they will come from a cadaver.  Many, many surgeons will take bones from the baby's hip, but ours has found that the cadaver works just as well and requires less pain for the baby.  

So, let me just do a little plug now to thank those who give their bodies when they are done with them.  We never knew we would need you, but are glad you were kind enough to give of yourself to spare our son some pain.  End plug.

At approximately 9-12 months old, he will have the lip and palate reconstruction surgery.  The surgeon is hopeful that he can take care of both sides of Gabriel’s mouth at the same time, but wants us to be prepared that two surgeries may be required depending on the severity of the clefts.  An ENT will also likely put tubes in his ears (if he hasn't already) as 95% of babies with cleft have ear problems.

After that, he will work with a team of specialists including a pediatric dentist, a speech therapist, specialized nurses, a pediatric orthodontist, the plastic surgeon, and I am sure many others until he is 4-5 years old.  Hopefully by that point, he will no longer require any additional surgeries and no one will ever be able to tell how difficult his first year (or years) of life was.

If this sounds like a lot, it is.  If I sound like I am taking it all in stride, I'm not.  I have bad days.  Days where I come home and cry.  These are the days Chad reminds me that we are strong enough to get our baby through this.  Believe me - I am trying to be.

Well, certainly not all posts will be as long as this one - but I thought you'd need to know where we have been before I can tell you where we are going.  I will hopefully get some pics up as soon as I figure out this whole blogging thing...

Chat soon!