Graduation Day

 
NOTE: To the few, very few of you, who might check in on our blog regularly, don't be alarmed by the random posting.  I am trying to catch up, and am posting as I can.

Zachariah and Dr. Holmes

 Today is a Graduation Day of sorts for Zachariah.  We saw his awesome Ortho Doctor Holmes, and went from wearing shoes and braces from 23 hours today to just at night time--about 12 hours.  HOORAY for that!

Zachariah and Dr. Holmes awesome nurse, Sherrie.

 Dr. Holmes and Sherrie have been so wonderful as we have gone and seen them very frequently over the last few months.  Not only have they been upbeat and encouraging about the status of Zachariah's feet, but they have also been interested and concerned about his progress in other areas.

The first time we saw them in the office, Zachariah hadn't been home for a week.  It was very much a two person job to take him anywhere with all his stuff...feeding pump, monitor, oxygen tank and suction machine.  We were still getting used to doing it all on our own, and were very anxious parents.   They  made us feel at ease and comfortable, and wanted to know more about his condition, his nasal trumpet and feeding tube.   And so, as we went, every two weeks at first, and then three weeks, and then four weeks, and then six weeks, they were always excited to see how he was progressing.

I was feeding Zachariah as we were taken to our room to wait, and passed Dr. Holmes on the way.  She said, is that a bottle I see?   She and Sherrie were both so excited that his feeding tube was gone and he was eating fully by bottle.  She said, "we are like two aunts who are doting on him."    It is great when they are so excited to see how well he is progressing!  Now we get to go two months before we see them again, and get new shoes!

Eating his toes

The first thing Zachariah did after we took his his brace and shoes off was put his feet in his mouth.  We are glad that he is doing so well and is moving forward.  We feel so blessed!

Welcome to Holland

I found this on the blog of a friend's sister who has a special needs baby.   We've been in Holland for a little while now, but there is always something new coming your way.

"Welcome to Holland" by Emily Perl Kingsley, 1987

When you’re going to have a baby, it’s like planning a fabulous vacation trip to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum, the Sistine Chapel, Gondolas. You may learn some handy phrases in Italian. It’s all very exciting. After several months of eager anticipation, the day finally arrives. You pack your bags and off you go.

Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!”

“Holland?” you say. “What do you mean, Holland? I signed up for Italy. I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine, and disease. It’s just a different place.

So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower paced than Italy, less flashy than Italy.

But after you’ve been there for a while and you catch your breath, you look around. You begin to notice that Holland has windmills. Holland has tulips. And Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy, and they’re all bragging about what a wonderful time they had there. And for the rest of your life you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that experience will never, ever, ever, go away. The loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.

I have been blog neglectful.  I need to get back on the bandwagon.  So much to talk about.  So little time.  Soon.  But we are enjoying Holland!

Zachariah's Blessing

 We were able to have Zachariah blessed on Saturday.  It was a beautiful yet crazy day.  Still trying to get the hang of things, and this was really his first official "jaunt" out somewhere other than the doctor's office.  We were blessed to have lots of family come and participate--of course it was too crazy and I didn't get any other pictures.  My brother Devin took these pictures beforehand.  They turned out really great!

Smiling at Mom and Dad

I absolutely LOVE LOVE LOVE this picture.  I think it is so telling and precious of our children!

With mom and dad

Our cute and crazy family--minus Wesley.  We miss him and wish he was around much more frequently!

3 Months

I have pondered and contemplated this post for the last week or 10 days.  In that time, it has changed shape and form several times.  Some for the better, some for the worse.  I have a lot to say.  So bear with me...

The title of this post has also changed several times.  It has ranged from Life goes on, to Forget normal...searching for sanity, The pit of hell, One day at a time, Beyond starting over, Back at square one,  and I could go on.  I settled on 3 months, because Zachariah is 3 months old today.  It is Friday the 13th again.  Zachariah was born on Friday the 13th.  In some ways the time has flown by.  In others, it seems like forever and a day ago.

Three months ago we started this journey.  We never expected it to take us where it has; and we have little idea where it will lead in the future.  I think that is what many people fear, is the unknown.  And we have a lot of unknowns.  It has been a 3 month long colossal roller coaster ride and I am sure it will continue to be so. 

  Sometimes I feel like we are on our own little lifeboat out in the ocean, left to survive on our own.   Occasionally another boat floats up for a moment or two, drops off a much needed package, or visits for a moment, but then they are back off on their own journey and we are left to ourselves again.  The last two weeks I have really felt that way.  We have experienced a lot of changes and ups and downs in the last couple weeks, and I have come to some serious realizations. 

On April 2nd we took Zachariah to see Dr. Muntz, the ENT.  The plan was to spend several hours at the doctors, and do a trial without the nasal trumpet.  Admittedly, I was not looking forward to this for a few reasons.  First, spending hours at the doctor is not something I relish.  We do enough of it as is, and to do it on purpose is not fun.  Second, I was hesitant about this trial.  Zachariah has had a nasal trumpet since he was 3 days old.  He had gone without it for between 4 and 20 hours in the NICU.  We had not tried it at home, and I was worried.  I didn't think he was ready.  I worried that he couldn't do it.  I didn't want to think about what happens if he can't, now, or in 3 months.  We hadn't been sitting in a room for more than 3 minutes when Zachariah pulled his trumpet.  Sometimes I swear he knows EXACTLY what he is doing when he pulls it.  I am sure it is bothersome and itchy and all kinds of uncomfortable.  So thus began his trumpetless trial. 

 We stuck around for about 90 minutes to see how he would do, before we headed home.  The first hurdle was the carseat and the car.  The carseat isn't Zachariah's friend---it is difficult for him to get into a comfortable position where he can breathe well with the trumpet---so I was very worried about how he would do without the trumpet.  He slept all the way home and seemed to do fine.  I was certainly pleasantly surprised.   He continued to do well, and we continued to be hopeful.  Nights are hard because he still has a continuous feed (which I have begun to despise), so he can't sleep flat on his back.  He does ok propped up, with his head turned with the trumpet, but not so well without it.  So we put him on his side.  The first night he did ok, but by the second night he wasn't doing so well.  He'd had a rough afternoon and was having some spells, and I really felt he needed it back in.  I didn't necessarily want it back in, but I felt he needed it.  So we put it back in.  He went 58 hours without the trumpet, and did incredibly well for 50-52 of those hours.  In that time we learned it is more difficult for him to bottle feed without the trumpet.  There could be multiple reasons for that, but nonetheless,  we went backwards in our newly acquired ability to take a whole bottle.

  It was an insanely frustrating few days for mom.  I was really having a hard time with everything we were doing with him, on top of my inability to address all my other home and family responsibilities. And I was beginning to not just worry, but totally meltdown about what was going to happen in the next few days.   On April 5th, Zachariah got his last set of casts off, and got his shoes and bar.  I am glad we are done with casts, but this bar, which he currently wears for 23 hours a day, and then in 3 months will wear at night time until he is 3 years old, presents an entirely new set of challenges.  Because of the angle it holds his feet, he has to sleep flat on his back with it.  But he can't sleep flat on his back if he doesn't have the trumpet, he has to sleep on his side.  But he can't sleep on his side in this bar, because of the angle of how his feet are.  So we can't do one or the other without him regressing in some manner.  And it is just another THING.  Another thing that gets in the way.  Another thing that has to be hooked up.  Another thing that reduces maneuverabilty.  The first night we had it, the feeding tube got all tangled in it, and got pulled out.  The little shoes are leather, and very stiff at first, so we have to worry about blisters.  The bar is heavy, and takes some getting used.  The first two days, all he did was cry.  It was just too much and it was driving me literally insane, and I was having a hard time handling it all. 

This predicament led to a couple realizations.  First,  it is all too real that when  you have a child with special needs,  there aren't always services out there for them or you, and if there are, you can't always get them. Caring for Zachariah is a very time consuming and sometimes draining job.  I don't want to sound like I am always complaining, because I am not.  I do, a lot, but I also want others to be able to understand, even a little bit, how hard it can be.  I also need to remind myself that it isn't easy.  I all too often get consumed with my inability to take care of all the things around here that need to be done.  Meals, Dishes, Laundry, Cleaning, Caring for my other children,  all MY responsibilities, and all MY failures.  I don't know why it is so hard for me to get it organized and coordinated, and be able to do it, but I haven't been able to yet. If I could even get a handle on one or two of them, it would help. I was just feeling like I had a couple toes into the groove when all these changes started, and they just threw me flat on my back.  Emotions run very high; stress is at a maximum, and the feeling that it will "never be normal" is always in the back of my head. 

We have had a couple of health care professionals comment on how well we are doing with all this.  I just shake my head and think, you should come and spend a couple hours at my house, and you would see what a disaster and failure it all is.

And then this week I remembered something.  Before we left the NICU, they requested 24-32 hours a week of skilled care to help us out.  Of course the insurance denied it, so we didn't get it. I wonder how different things would be if we had 24-32 hours of help a week, either to care for Zachariah, or to help out with other household responsibilities.  I wonder how different it would be with 20 hours, or even 10.  I am sure it would be VERY different. So in the words of my very wise and seasoned sister in law, I am going to "lower my expectations".  I am sure my dear sweet husband will appreciate that--NOT--but for my own sanity, I am going to try for awhile to lower my expectations, and not feel like a failure because I can't get anything done.

 Second, and even more overwhelming was the realization of just how special this little boy is.  There is not another child like him, with his conditions and needs, within the state of Utah, within 1000 miles from here, and possibly not anywhere.  It is possible that he is the ONLY child in this world that has this set of conditions and needs that are being addressed in the manner that they are. No one has ever left Primary Childrens with a nasal trumpet---and there are very few places that use them on an out patient basis.  That alone, sets him apart.  Clubfoot has an occurrence of about 1 in 1000.  Sticklers Syndrome has an occurrence of about 1 in 10000, and Pierre Robin has an occurrence of about 1 in 30000 in his form.  I am no mathematician, but if you put the 3 together, I am sure the occurence of it is rather rare. I am sure there are several kids who have 2 of his issues, in fact I know it, because Aynsli has 2 of the 3, in a different form,   but very, very few who have all three. 
Talk about OVERWHELMING and HUMBLING!  Yet it also makes it very difficult to find answers to your questions, or solutions to your problems, because nobody knows.  Nobody has dealt with it before, and so they have no answers.  At times, you can feel very alone.

It is not easy.
It is emotional. 
It is lonely.
It is intense. 
It is frustrating. 
It is time consuming.  
It is overwhelming.
It is exhausting.  
It is hard.  
It is knee-bending, floor-hugging, fetal-position-sobbing hard at times. 

But it is worth it. 

 I have this beautiful sweet little boy.  This precious little man whose eyes light up when he sees me, who smiles and coos at me.  This sweet little who loves to snuggle and be held, and who I swear can wriggle himself across the bed to lay right up against me. This amazingly strongly little person who has already taught me countless lessons; and continues to do so every day.

Could I be more blessed?

Three months.  It has been an amazing three months.  We have laughed. We have cried.  We have struggled.  We have triumphed.  We have cried some more. We have been up. We have been down.  We have wished.  We have hoped. We have struggled some more.  We have failed. We have overcome. We have felt your prayers.  We have been blessed by your love and your service. We are grateful.  And we will continue on. 

38 days

Zachariah was in the NICU for 38 incredibly long days.  Today Zachariah has been home for 38 days.  It is a little amazing to believe that we are now starting a phase of life where he has been home longer than he was in the hospital.  The last 38 days have not been without event.  It has been a wild and crazy ride.  Physically. Mentally.  Emotionally.  I have cried as much as I did while he was in the hospital.  I am much more exhausted physically~but am finally getting used to the lack of sleep, sort of.  Last night I hadn't heard a peep from him or his monitor when I woke up at 3:30am.  So it is getting better.  Slowly.  Little by little.  Slowly.

In 38 days we have:

- been to the pediatrician 3 times
- been to the ENT once, and going again on Monday
- been to orthopedics 4 times, and going again in a week
- had home therapy and intervention visits 6 times
- had one real scare
- had one trip to the ER
- called 911 twice with paramedics responding
- had his achilles tendons clipped and last set of casts put on
- struggled with feeding pumps, monitor alarms, and humidifier levels
- replaced his nasal trumpet more times than I care to count
- replaced his feeding tube many times
- fought with tegaderm on a daily basis

...and I could go on and on.  Two Sundays ago Zachariah left the bedroom for the first time to go somewhere other than the car to the doctor.  I took him downstairs for a little while.  It was nice not to have to run upstairs every few minutes to check an alarm, or see why he was crying.

Things still certainly aren't normal, whatever that means,  but we are getting closer to finding out.  Mornings are still hard.  Multi-tasking is still hard. Dinner is still hard.  Although tonight for the first time I cooked dinner, ate with the family, and cleaned up.  I brought Zachariah down with me, and it was much easier.  We are getting more comfortable with unhooking him from his machines for a time so he can be downstairs.  It is a good thing.

  I have vacillated back and forth many times between "we have a special needs child who has some pretty high maintenance needs" and "we have a pretty normal child who has a few issues we just have to work through".  I guess both are true.  The airway issue is all up to him.  I suppose it is possible, as much as we don't want to think it, and hope and pray it doesn't come to that, that he still could have to have some pretty drastic procedures...like a tracheotomy.  There isn't much we can do to help him with the airway, other than pray.  And we do plenty of that.  Only time will tell.  And we've got about 4 months.

Just since Friday he has done much better taking his bottle.  It is amazing how positive a little success can make you feel.  It is almost if now I expect him to be able to take his bottle all the time.  And today, he took all 4 feedings during the day!!!  Now we just have to work on the night feeding issue.

In many ways, I feel like in just the last couple of days things have started to come together just a little bit more.  I feel more together than I have in a long time.  I still don't get much done, but maybe with a little more time, that will come too. 

 I think we are just more comfortable with Zachariah and his needs, and how to handle them.  We know what to do on most occasions, and do it.  There is still much progress to be made, but finally making some makes it feel like there is a light at the end of the tunnel.    We have got some big tasks ahead of us and big steps to make, but eventually we will get there.

How thankful we are for the progress that has been made.  And we know it is through your thoughts and prayers that has happened.  Thank you so much for your love and support.  We certainly couldn't be doing this on our own.  For the countless acts of service, meals, watching our girls, phone calls, comments, thoughts, and prayers, we are grateful.  Thank you so much.  We will continue to march forward, and look forward to the good things the next 38 days bring!  : )

This one is for you, Earl!

Sleeping through bath time!

In the NICU, bath night is Monday, Wednesday, and Friday, on the night shift.  So bath time occurs anywhere between 8pm and 2am on average.  Earl always told us that after the first time, he learned his lesson to NOT wake Zachariah for a bath.  It always made him grumpy.  And that was before his casts were on.

Zachariah has had casts on since the last two weeks he was in the NICU.  So we have never been able to give him a "real" bath.  It is slightly difficult to bathe a baby in hip to toe casts on both legs, but we do what we can.  Maybe it is because its just a sponge bath that he doesn't mind it, but he usually sleeps through it.

So when he kept sleeping through his "bath" here at home, we thought we'd better take this picture for Earl, because he must have been doing something wrong!  : )  Just kidding...we love you Earl!

A few of our favorite people

Seriously.  I just spent 20 minutes typing up the rest of this post, and went to publish it, and it disappeared forever.  So all my wonderful words are gone.  I will try to re-create it, but I am sure it won't be as good as the first time around...

Nope it wasn't.  But I hope you get the gist...

The NICU is filled with some pretty amazing people.  We were blessed to work with several of them.  I wish I had pictures of more of them, but here are a few of the most awesome...obviously, because they are the ones we have pictures of!  : )

This is Barbara, our OT.  She was AWESOME!  She is the one that worked with Zachariah on bottle feeding.  This picture was Zachariah's first bottle.  You never think about how much work eating can be, until you have a baby with feeding issues.  We are so grateful for her, and all she did to help us out!

This is Kelley.  She was one of Zachariah's primary nurses.  We love Kelley.  She was great and it was a pleasure to work with her, and to know that Zachariah was well cared for in her hands.

This is Bailey, Earl and Jaelynne.  Earl and Jaelynne were Zachariah's other primary nurses.  Earl was training Bailey.  We couldn't have asked for better primary nurses.  These guys were awesome!  Earl is hilarious and was always so calm and collected.  It was a joy to be around him, because you knew he really cared.  He didn't always work with Zachariah when he was on shift, because he was training Bailey, and she needed to learn a variety of things, but he would always make a point of stopping by and checking in on us.  We love Earl!  He was our good luck charm!  : )

This is a picture of me holding Zachariah, and Earl, holding Myra.  Myra was our bunkmate/NICU neighbor for the last 2 weeks we were there.  She was being adopted, and we had the pleasure of getting to know her adoptive parents, who live in Illinois.  It was wonderful to have someone to talk to when we were there, and we hope Myra and Jill and Justin are all doing well.  Myra was born at 37 weeks and weighed in at a whopping 12 lbs 3oz.  Zachariah was almost 5 weeks old and Myra not quite 2 weeks old in this picture.

Me, Zachariah, Jaelynne, and Kelley on picnic day!  In the NICU they call going home day, going on a picnic.

This is Jaelynne.  She was the nurse that worked with Zachariah more than anyone.  And she is WONDERFUL.  There are some people you just click with, and she is one that we just clicked with.  She had a NICU baby herself, so she understood a lot of the trials we went through.  She loves her job, is great at it; and she loved our baby.  Jaelynne was the nurse the day that Zachariah had his MRI.  Because of his conditions, and the need to remain completely still during the procedure, they had to sedate him.  Jaelynne was the one that took him down and got him all situated and ready, and was talking to him and making sure he was ok.  And she stayed with him the whole time.  She was so involved in his care that the MRI tech asked if she was the mom.  We thought that was pretty funny!  Jaelynne wasn't just his nurse, she was our friend, and still is.  It is kind of a scary thing to leave the NICU--all of a sudden you are on your own.  But she is one that if we have a question we can call, and we don't feel quite so alone.  Thank you for being amazing Jaelynne.  We love you!

The NICU really is a family.  We were blessed to work with so many great and wonderful people who participated in Zachariah's care.  We couldn't have done it without them.  We are grateful for their care and concern, and their willingness to help us get Zachariah home in a safe manner.

Thanks NICU, we love you.

And  special thanks to Earl, Kelley and Jaelynne.  We are so blessed to have worked with you, and to have had you care for Zachariah.  You will always be part of our family!

(Earl or Jaelynne, if you read this, will you please pass our blog along to Kelley too.  We would love for her to have access as well!)

Guess Who...

...Just finished all 80ccs of his feeding by bottle for the first time?








This cute little guy!

Great Job Zachariah!

How sweet am I?

This is the bottle!

Searching for "normal"...

I started this post like 4 days ago. As per usual, something more urgent interrupted, and this was left by the wayside until now.  Such is our life at the moment...you have to be ready to stop what you are doing at any time, to address a more urgent need...
It has been on my list of things to do for quite awhile now.  Update the blog.  I really should be sleeping, or cleaning or trying to figure out whats for dinner before dinner time is upon us and I have no idea, and no time, because I am consumed with baby.  Sleeping is hard to do with a 2 and 4 year old around though.  They don't usually bother me, but instead cause some kind of havoc and chaos--like overflowing the toilet, pulling out all of the wipes from  a brand new package,  putting bum cream on the baby dolls, or using hand sanitizer like it was lotion.  Those are just a few of the "incidents" this week.  I have to choose.  Sleep, or keep tabs on them.  Sometimes I have no choice but to sleep.  Even if it is only 20 minutes.

So, Zachariah has been home for 20 days now.  It has been a roller coaster.  We knew that we had no idea how much work it was going to be.  Now we know.  Thankfully most days we can handle it.  There are those few though, when it seems like  everything is falling apart, and you don't know if you can deal with one more thing.  I will admit, the second day we had him home, I was seriously questioning our choice.  What in the world were we thinking?  How are we ever going to handle this?  Thankfully I gave myself a little slack, and said it is only the second day, give it some time.  Well, here we are 18 days later, and although it was a horrible night, and I was up every 10 minutes for about 3 hours, and every 30-40 the rest of the night, it is better.  We are more comfortable with everything we have to deal with.  It doesn't make it easy, but we are more comfortable with it.  Some days are still consumed with Zachariah and taking care of him; occasionally there is a day when I can get something else done. 
 In the NICU, they have parent hour every Wednesday, and often have "graduate" parents come and share their NICU stories.  I am grateful for those who "survived" and share about it.  However, I am beginning to think they need to have a "Post NICU" parent class.  I guess everyone's experience after NICU is different, but I am sure there are some similarities as well, and those should be shared.  Things like how overwhelming and time consuming it is to go from spending the majority of your days at the hospital, and then going home to the rest of your life to becoming the full time caretaker, 24/7 for this child with some pretty advanced special needs.  Although there may not be anything that can prepare you for that.  No one can tell you how to figure out how to get your school child up and ready, while trying to get a baby changed and fed.  And by fed I mean spending 30 minutes working with a special bottle, and then measuring, priming, and putting the rest of it in the feeding tube, and that is if everything has gone smoothly. 
And the doctor visits!  We brought every machine home with us that Zachariah was on in the NICU.  He has a pulse oximeter that monitors his oxygen saturation and his heart rate; and alarms anytime there is a true issue, a false issue, or a non readable issue.  He has oxygen, and now high flow oxygen with a humidifier.  The tube for the humidifier is only about 3 feet long, so our portability is very low.  We have about a 8 foot maneuverable space, and that is it.  He has the NG tube and feeding pump, which is a real pain in the rear.  It is never exact, and can under or over feed by 5%, and can cause air bubbles as well.  And then there is the suctioning unit.  Loud and noisy, but does the job.   It takes us at least 30 minutes to get everything packed up and ready to get into the car.  And is still pretty much a 2 person job.  And because someone needs to sit next to him to monitor him, we can't  go anywhere as a family even if we wanted to, because there is not enough room for all the other carseats in the back.  Hopefully someday that will change, but right now, I haven't yet reached my comfort level of sitting in the front seat while he is in the back.  And my dear sweet husband has been so wonderful to take the time to go to each doctor appointment, so that I can sit back there and monitor Zachariah.  In 20 days we have had 6 appointments already. And there are many more ahead.

And I haven't even mentioned the fact that we have 3 little girls, and life that goes on at home.  Some days some things get done, some  days they don't.  It is an absolute miracle if I am able to get dinner ready before 7pm, and even moreso a miracle if I am actually able to sit down and eat.  I guess it kind of feels like that people think that since we are home, things must be back to "normal".  I am here to tell you there could be nothing further from the truth.  In some ways, it is like we could use the help even  more now than before.   Thank goodness for my mom and my sister in law Marissa.  Without them we would seriously be underwater.  They have saved us on many occasion, and have helped us out in countless ways and with countless hours.  Someday, I hope, I will be able to get up, dressed, take care of the kids, take care of Zachariah, do dishes, make dinner, and bathe the kids all in the same day!  We are definitely searching for our new normal.  Someday, it will come.  When that day will be, is anyone's guess.

Time for an Update

I should have updated a long time ago. I am so tired and drained by the time I get home in the evening, all I want to do is sleep.  But I still have to be mom for a few more hours.  And the cycle repeats itself day after day....


I also have this ridiculous idea that I can't post if I haven't uploaded the pictures related to my post.  Well, I am going to try and get past that, and eventually get the pictures posted....


Thank you all for your thoughts and prayers and help in any fashion.  We appreciate it greatly.  We are so blessed to have so many people who love and care about us.  And who are willing to help.  We couldn't do it without you!


So, today is day 29.  He passed Aynsli 4 days ago in days in NICU.   On Day 11 Zachariah had his first surgery.  It is called a tongue lip adhesion.  Because he has the small lower jaw, much of his airway issue is caused by his tongue falling back and blocking his airway, causing oxygen issues.  In the surgery they sewed his tongue to the inside of his bottom lip, to prevent it from falling back.  To keep it in place while it healed, they sewed 2 buttons--one on the outside on the bottom of his chin--one on the inside, on the back of his tongue.  Yes, and I am sure it is as bad as it sounds.  He was nasally intubated for 3 days post op, to make sure he had a sure airway while some of the swelling went down.  (That was intubation #2).  After he was extubated, they put in a nasal trumpet, which helps hold the tongue down, and create an airway.  During the 8 days with the buttons, Zachariah had some pretty bad episodes with his breathing.  I am sure that having a feeding tube, a nasal trumpet, and a button all in the back of your mouth is not an enjoyable thing, and when you are still learning to coordinate your breathing, it can cause some issues.  --I would imagine even if you know how to coordinate your breathing it could cause some problems. 


Obviously this was never a happy thing to witness, and we worried a lot about what our options might be.  We had been told the only 2 other options were jaw distraction, where they put little screws into his jaw, pull it forward, and turn them weekly to create bone growth behind it.  His gap is relatively small-- only 2mm, so this didn't seem like a good option for him.  And beyond that, was a tracheotomy.  Obviously no one wants to have that, and it is certainly something we didn't want to do  if it wasn't absolutely  necessary.  He did so well most of the time that just seemed so drastic.  But we weren't sure what was going to happen. 


On Day 19 he got his buttons removed.  That alone was great.  He looked so much better.  He had the nasal trumpet and high flow oxygen, but seemed to be doing well.  By Day 21 he was still having some occasional "bad" episodes where he would desat and couldn't recover without intervention.  And he was still having episodes where he would desat and recover on his own.  The frequency of both of these was very concerning, and we weren't sure what was going to happen, because he can't come home with the frequency and severity of desat episodes he was having.  It was a very discouraging and frustrating few days.


On Day 25 we requested a care conference with all his doctors, so we could create a plan to work towards getting him home.  His ENT, Dr. Muntz, who is kind of in charge of his care, said that there was no issue  going home with a nasal trumpet, and oxygen/air flow.   He also said that they send kids home all the time with NG tubes.  The NG tube is going to be the NICUs biggest issue if his airway issue is stabilized.  They just don't send babies home with NG tubes.  We can totally understand--it does have risks.  If the tube were to somehow get into the lungs instead of the stomach, you could have major problems.   It is certainly  not my favorite thing to place--but I have done it before with Aynsli, and if Zachariah is stable with his airway, and the NG tube is all that is holding him back--we will do it again--we don't want that to keep him in the NICU.  And I guess that past experience is playing in our favor, because they have agreed to let us do that.


On Day 24 Zachariah had his feeding assessment.  He has to have a special (and expensive--$25 per nipple) bottle, but he did really well.  He still isn't able to take a whole feeding through a bottle--hence the need for the NG tube--but he is able to do it and coordinate his suck, swallow, breathing pattern without aspirating. That is such good news!


On Day 27 he had his hearing screening, and did not pass.  That does give us cause for concern, because his loss right now is in speech developing tones.  However, they do say that the test suggests it could be do to fluid in his ears--which is particularly common with small jaws and cleft palates.  So they will retest in 4-6 weeks.  We will continue to pray that it is just fluid, and will resolve itself with or without the need for tubes.  We also got confirmation that we are to start our training in preparation for going home.


So yesterday, on Day 28 we started some of our airway training with the Trach nurse.  He is not getting a trach, but she is the one who is doing the all the respiratory stuff.  She told us yesterday we are "blazing new trails", because they have never sent anyone home with the nasal trumpet before.  So there is no training module, no teaching packet--we are making it up as we go along.  We are grateful they are letting us do this!  So we did some placing of the nasal trumpet, did some suctioning, and did a placement of the NG tube.   All things that we need to do a few more times before he can come home.   And he will be coming home with all kinds of paraphenalia.  A pulse oximeter monitor, oxygen/flow in some form, a suctioning unit, and probably a feeding pump.  We are going to have our own little NICU corner set up in our bedroom.  But we are grateful that we are at least talking about it and it is getting closer.   


Zachariah also got his casts on his legs yesterday.  For the next 4-6 weeks he will be in hip to toe casts.  And they are plaster and probably double his weight.  Not quite, but he is bottom heavy now!  :)  He will get them changed weekly, and then they will lengthen tendons, be in cast for 3 more weeks, and then move to shoes with a bar for the next 2-3 years.  


All kinds of craziness, but we are moving forward and making progress.  We still have a lot to do, and a lot of things we need to get in preparation for bringing him home, but we are headed in the right direction.


So that, is the last 18 days in a nutshell.  It all runs together, and keeping things straight is nearly impossible.  But we are so thankful for the good care he receives, for the blessings we all have received, and that this situation is temporary.   We in the last few days have been reminded by babies around us, that our situation isn't really that bad--but that is a story for another day.


I will add pictures as I can, but at least I got the words down!  : )


Thank you all for your love and support!

In case you were wondering...

I don't know if any of you have been wondering, but we are allowed to have visitors in the NICU.  You have to be healthy, at least 14 years old, and can only come when either Chris or I are there.  Only 2 people are allowed at the bedside at a time but that is ok.   If you would like to come visit, just let us know and we would be more than happy to work it out. 

Counting

21--number of days our sweet boy has been in the NICU
7--the number of teeth Aynsli had pulled on Tuesday
4--number of sick children/adults in our house right now
80--number of miles travelled daily to the hospital and back
597--the number of times it seems we've heard "I don't know" this week
3--number of times Zachariah has been intubated and extubated
8900--number of dollars to Life Flight Zachariah to Primary Childrens
19--number of desat episodes in one given 12 hour shift
97000--number of dollars submitted to insurance for care thus far

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.