Welcome Zachariah Blue Condie

Zachariah's first picture

Our Sweet Zachariah Blue Condie was born on Friday January 13, 2012.  After a rather eventful labor, he came into the world  quickly.  We had gone in to the hospital at 6am that morning, and after 3 hours of not being able to keep him on the monitor because he was moving so much, they finally did an ultrasound.  And of course, our little mover and shaker was lying sideways.  This had been a huge fear of mine, because for the previous 3 weeks he had been head up and sideways on multiple occasions.  So, when the day before we made the decision to induce, part of it was because he was head down.  Obviously that didn't last.  So for an hour they monitored him, and then my doctor came in and between him and 2 nurses, they were able to turn him into a mostly head down position.  For an hour I stayed scrunched up on my side to keep him from moving.  At 11am the doctor came back and tried to place the fetal head monitor, but in the process broke my water.  So we were committed, come what may.  From there labor progressed fairly normally and steadily, and our sweet boy stayed where he should.  When he was born, my doctor, who has delivered the last 3 of my children, asked, "do all your kids pop out so easily?"  He has almost missed a couple of them because they came quickly.  They placed him on me for a few seconds, and then took him to the warmer to do his newborn exam.  Within a couple minutes we heard the words, "He has a cleft", and our world changed instantly.  Zachariah was born with a cleft palate, and Pierre Robin, which means his lower jaw is smaller than his upper jaw. 

This is how he had to be positioned, even on his tummy

 Aynsli was born with the same thing.  We spent 25 days in the NICU with Aynsli because she had some feeding issues, but she didn't have any airway issues, as long as she was positioned on her tummy.  It quickly became evident with Zachariah, that he had some more extensive airway issues, and had trouble breathing, even on his tummy, and that he was going to have to be transported to Primary Childrens Medical Center.  Not what any parent wants to hear, whether you have been through it before or not.  Initially they told us it would be done by ambulance, so we thought we had a little time, but then they decided there was no reason for a 40 minute transport, where someone would have to hold his jaw the whole time, when it could be done in 6 minutes by helicopter.  So just an hour after he was born, we heard the helicopter land. --That sound will forever hold different meaning for us now.--It took them about an hour to get him all set to go, and then they brought him in to us to see for a few minutes before they took off.

This is the first time I really got to see my little boy.

Our first family photo.  Not exactly what we'd planned, but we'll take it.

We got to spend about 10-15 minutes with him before they took him.  I am so grateful that my girls got to see him, even for a few moments, before they took him, because they aren't allowed to go to the NICU due to RSV season.  It is tough for them to have mom  and dad go and they don't get to.

Sweet Zachariah.  He is such a mellow little man.

They had to intubate him to keep his airway open.  He can breathe on his own, but because of the Pierre Robin, he can't keep his tongue forward.  I'll write more about his condition shortly.

I look at this, and think that I should have been much more terrified that my little boy was being transported and there wasn't much I could do.  Grateful for wonderful people who helped us though!

Dad and the girls were able to follow him out to the helicopter pad and watch him leave.  Mom was left in the room alone.  All I got was to hear the sound of the helicopter start, and then take off.  Not exactly an easy thing to hear.

Zachariah's first helicopter ride.

Not the best pictures, but it was dark.   Girls watching their brother leave in the helicopter.

After Zachariah departed, the girls left with Grandma, and for a little while it was just mom and dad.  It was all too quiet and not what we expected or planned on; and really our first chance to process it all. So many things to think about, and so many thoughts go through your head.  As tough as it all was, and still is, our minor saving grace is that we've been here before.  If we hadn't done this with Aynsli, we both would have been a total basket case.  As such, we were tired, worn out, exhausted, worried, emotional, but not frantic.

Sweet baby boy, with intubation tube still in.

My doctor was kind enough to release me the next morning--a mere 16 hours after he was born.  Not exactly my anticipated recovery time (I am still waiting for that : )! ), but I needed to see my little boy.  We got to the hospital about 3pm, and I was finally able to hold my little man.  We met with the geneticist for a good hour, spoke with the nurse practioner, and worked with the nurse.  Being the weekend, nobody else was in, but there was a whole list of scheduled consults: ENT, Opthamology, Orthopedics, PT/OT, Audiology--I think that is all of them.  One big blessing is that most of these doctors are ones that we already take Aynsli to, and so are familiar with them, and have worked closely with them for the last 4.5 years.

Mom holding Zachariah for the first time!

Dad holding Zachariah for the first time.

Zachariah's first bed in the NICU

So, what is going on with our little man?  Here is the scoop.  And I apologize if it is lengthy.  Zachariah was born with Pierre Robin Sequence and Sticklers Syndrome--both things that Aynsli has.  Sticklers is a connective tissue syndrome, and affects eyes, ears, heart, joints, etc...it is genetic, and is a 50/50 dominant trait.  The issues in the family tend to be eye--retinal tears and and detachments, although Aynsli's retinas are healthy.  And Zachariah's are too.  Our little family gene mutation appears to be the cleft palate, and small jaw.  And Zachariah has club feet.  The Pierre Robin causes the small lower jaw, which doesn't grow all the way forward, but the tongue is "normal" size, so doesn't allow the palate to close, resulting in the cleft.   Aynsli's cleft was long and narrow, more V shaped, where Zachariah's is more U or horse shoe shaped.  I believe this is the main reason he is having more airway issues, that Aynsli didn't have. 

Pierre Robin is relatively rare-- 1 in 8500 to 14000 babies are born with it, and yet we have 2 precious little ones who have it.  As difficult as it can be, and as hard as this road is going to be for Zachariah, there are so many worse things.  Right now, our biggest issue is maintaining an airway.  Because his lower jaw is small, his tongue is further back, and makes it much easier for it to fall back and block his airway.  Aynsli did well with just positioning on her tummy, but for Zachariah it is not that simple.  That is why he was initially intubated--so the tube would keep his tongue down, allowing his airway to stay clear.  With time, his jaw will grow, and he will learn to move his tongue, but for right now, he doesn't have those abilities.  So it is day by day, and step by step, and we'll look back one day and see that it passed quickly, but right now, it is tough.  Ups, downs, physical and emotional exhaustion, splitting your time and life between your children, an 80 mile round trip daily, new nurses and doctors every day, and I could go on...

We are so grateful for the prayers that have been offered in our behalf, and the help that has been given.  Know that we appreciate it so much, and couldn't do it without your support.  Thank you.

I will continue to update as I can.  It has already been 10 days, and I certainly didn't cover everything, but wanted to get it down.  Tomorrow we are scheduled for surgery--they are doing a tongue lip adhesion, but that is a post for another day.