Here are a few more....

--sometimes it feels like you didn't even have a baby.  You aren't doing the any of the "new baby" things, and it often doesn't seem real.  Is he really mine?

--just because your world has flipped, is all out of whack, forever changed, the world doesn't stop.  Life goes on...other people do normal things...even if you feel like you never will.

--some days are just awful.  It feels like the world is against you and nobody cares.  Hopefully those days are few in number.

--the realization that life as you knew it may never be the same is hard.

--there  may or may not be denial, there is most certainly periods of anger, bargaining, depression, and I am sure there will be acceptance one day.  And round and round it goes.

--It may not be the best to blog when you are having a bad day, but it might be necessary.  All of the feelings and emotions are real, regardless of how happy/unhappy, intense and frustrating they may be.

Random musings about the NICU experience...

Just a few thoughts that have been running through my head for the last 16 days.  Things you want to talk about sometimes, but don't necessarily get the chance to.

--I feel so dumb for not considering the fact that this could happen again.  Not that knowing about it ahead of time would have changed much; just worried more.  Still feel dumb.

--It doesn't matter if you have been here before, it is still hard!!!

--The only constancy about the NICU is that things always change.

--You think you will get into a routine, but it never happens.  Day by day is all you can do.  Some times hour by hour or minute by minute.

--Every nurse has their own style.  All the change can be hard.

--Time never passes faster than when you are sitting and holding your baby.

--Time never passes slower than when you have to leave and are away from your baby.

--Days when there is "nothing going on" are good, because you aren't moving backwards, but they are hard because you can't "hurry up and get to the next step either"

--You never think about someone telling you IF you can hold your baby or not, or having to help you do it, until you've had a NICU baby.

--NICU babies have to meet all kinds of parameters before they can go home--pass a car seat test, be eating so much on a regular schedule, be consistently gaining weight--things you would never consider if you haven't been there.

--NICU parents have to do things too---take a "course" in infant CPR, watch the Purple Crying video, watch the Car Seat Safety video,  and pass off all those things with a nurse

--parents who have NICU babies are 1% of the population.  I don't even know what those of us who have had 2 NICU babies would be--pretty special I guess.

--There are way too many cords and wires in the NICU--holding your baby can be tricky when you are trying to navigate the cords.

--You could sit there all day and stare at the monitors as alarms go off--making sure 02 levels are good, respirations are normal, and heart rate is good.  All things you would never consider without the NICU "experience".

--when you are the one that can calm your baby down, and he fusses a lot when you aren't there, it is time for him to come home!  Nurses can't take the time that mom can to make them comfortable, and when you can't be there, and know they are medicating him to make him comfortable, it is among the worst of feelings in the world.

--tears are always right at the surface, ready to be expressed. ALWAYS.

--even the normal things aren't normal.  Walking past the baby section in the store can make you cry.

--you have crazy thoughts, which brings tears.  Why are you unloading the dishwasher when you have a little one in the NICU?  How can you be doing this when you should be with him.   How can you be with him when you should be with your 3 girls.  There is no good place, because your family is not together, and you feel guilty wherever you are.

--how can we ever adequately express the gratitude and thanks for all those who have helped us?  You can't.  You could never do this alone, and you can never really tell those who have helped just how much you love them, and are so grateful and appreciative for their concern and help.  THANK YOU.

--Prayers are a blessing.  Prayers work.  Prayers are answered.  Thank you for your prayers!

--Even on your worst of days, someone else has it worse.  You have to be grateful for your experience.  We could live out of state, we could be able to NOT hold our baby.  We could be doing this for MONTHS.  We could NOT have family around to help.  But we don't. We live close, we get to hold our baby, we know that it won't be "too" much longer, and we have amazing family and friends around to help.  How grateful we are for all of those things!

--No matter how tired, exhausting, draining and frustrating this all is, both physically and emotionally, we know that it won't really be that long before we look back on these weeks, and they are a distant memory, and we have a happy healthy little boy at home with us.  Right now it seems like forever before that will happen, but we gladly look forward to the day when it does.

I am sure there are several more dozen things I could add, but they come in the moment, not necessarily when you are trying to document them.  So know that we are hanging in there, and slowly making progress.

I will continue to update as I can.

Days 2-10

His first NICU bed slot. Bed #23

Truly the days have all kind of passed in a blur.  So much has happened, it is hard to keep it straight, even hours at a time.  Grandma Weaver and Grandpa Condie were both able to come up and visit Zachariah on day 3.  How grateful we are for their love and support.  And we make sure to take pictures too.  ; )

Grandma holding Zachariah

Grandpa holding Zachariah

 

Peeking at Dad with one eye open

Zachariah was scheduled to be extubated and have a bronchial scope done on Monday.  We were told he was on first at 7am, so to be there by 6:30am.  So we were up and there early Monday morning, only to be told that there was some kind of mess up, and he wasn't going in until around 4pm.  Needless to say, that didn't sit well with an emotionally and physically exhausted mama.  Thankfully the nurses and staff were very kind, and got us a room where we could go and rest and relax while we waited the day away.  Finally, about 4pm, we headed down to the OR floor.  We met with the doctor, the anesthesiologist, and they wheeled my sweet boy away.  I am sure that is a feeling I will NEVER get used to.  We went back up to our room to wait.  It was about 90 minutes later when the doctor came up to talk to us.  He said everything went well, they were able to take the tube out, the scope looked good, and now he had a nasal trumpet in, and seemed to be doing well with that.  Such a relief.  Now we give it a day or two to adjust, and see how he does without the nasal trumpet.

On the giraffe lights for his bilirubin

Hanging out under the lights for a couple days

After a few days under the lights, he was able to come off them.  He also was through with TPN and lipids and was able to have his IV pulled.  He was doing well with his O2 levels with the trumpet in as well.  So we were making all kinds of little forward progress steps.  They pulled the nasal trumpet for the first time on Wednesday, and he did well for a few hours, before they had to put it back in.  They tried again on Friday, and he did well for about 20 hours, but then had kind of a scary desat episode.  He would desat a little with moving around and position changes, but always recover on his own.  But Saturday morning had a couple big desats down into the 20s and his color wasn't good.  They finally got the nasal trumpet back in, and he did better then.  We knew that he probably wouldn't be able to do it on his own, but it is always scary when your baby isn't breathing well.

Just hanging out.  He is such a sweet boy!

With his nasal trumpet and a little high flow 02.

Cute little feet--soon to be casted.

Probably the best view to see how his chin and jaw are more recessed

 We met with the doctor both Friday night and Monday afternoon, and made the decision to do surgery on Tuesday.  We gave it a go with the nasal trumpet, and don't want him home in an unsafe manner where he is still having desat issues, so something more is what needs to be done.  So Tuesday is the first surgery day.  He will have a tongue lip adhesion, which we pray will be successful, and solve his airway issues, and allow him to be that much closer to coming home.

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.

Dusting it off...

I have neglected this blog my entire pregnancy.  I looked at it many times, thinking I should post something for there were many times I should, but for various reasons, I did not.  


But now it is time. 


Life has changed dramatically, and although I currently don't have the time I would like to dedicate to it,  I know there are many of you who would like to know what is going on.  So my goal this week is to post at least 3 times.  Post one coming soon...like today.