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