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