Farewell to the Throne

Almost 6 years ago we got the most amazing gift! 

 It is probably the most personal and well-used gift that we have ever received.

 We have loved it. It has supported us through many bad times.

 It has been there through many ups and downs.

 It has taken a lot of crap.

The other day, its reign ended. After several good years, it was de-throned, and a new one had to take its place.

Farewell good friend, we will miss you!

Never Forget

It has been 12 years since our world was changed dramatically.  For those that can remember, I am sure you do...and will never forget where you were at those moments.  For me, in some ways it has been a whole lifetime since then. In others, the memories are so poignant it seems like just yesterday.  I still tear up and cry when I see pictures or videos, or read stories of that day.

As a little girl my family went to New York City, and went to the top of the Trade Center. I remember the dizzying view from the roof, the feeling of slight swaying, and the incredible experience of being so high, and seeing so much.  We put our quarter in the binoculars and could see the Statue of Liberty.  I remember the long elevator ride up. I remember the busy lobby....the hustle and bustle.  I remember sitting in the car waiting, while my older brother got to go up a second time with my aunt.  I remember looking up at the sheer size of those mammoth buildings.   It was an experience I will never forget.

12 years ago I remember going downstairs to exercise before work...and turning on the TV. I remember the initial confusion as I started to clue in to what people were talking about.  I remember the tears that started to flow, and the shock and the pain as I watched live as the second plane hit the towers.  I remember dragging myself away to get myself ready for work. I remember my mom telling me the first tower collapsed, and watching the second one go.   I remember the concern for for my brother and sister in law, who were in Germany at the time, and how this would effect their return....which was delayed a few days.   I remember the stillness in the skies as all planes were grounded for a day or two. It was somewhat eerie when seeing planes in the sky was an everyday occurrence. I remember the prayer in my heart for those who were hurting. For those who were directly affected, and for those indirectly affected.  If you remember, you were affected.

I remember the trip we made to NYC in 2004 when I was 6 weeks pregnant with Aynsli.  I remember peering into the large holes where the towers used to stand.

 I remember so many people there...looking, listening, reflecting, remembering.

 I remember the reverence about the place. 

I also remember the feeling of resolve. The readiness to rebuild.

And I will never forget.

None of my children were born at that time. It is my opportunity to teach them the how and the why.  To teach them to be strong, to rise above, to rely on the Lord.  To teach them that they are the good in the world, and they can spread that goodness and light in all that they do.  That they can be examples and a force for good. And  THAT will never be forgotten.

It is a day of reflection and remembrance.  A day of gratitude for good.  

We will look forward to the future, knowing we can never forget the past!

Where Do I Even Begin?

It is true. That is totally and completely how I feel.  Where do I even begin? How do I ever even TRY to catch up? Is it possible?  Highly un.like.ly!  I did change the background and update some of the photos though.  I should get credit for that :)!  

Look at those kids! I do claim them all!  Craziness.Busy.Busy.Busy.So.Much.Fun.

We had Wesley with us for 6 weeks this summer, and it was so good to have him here. We so wish he lived closer so we could see him more.  He is such a good kid and the girls adore him. And Zachariah loves him.  They got to be such good buddies!

My kids are growing up! How did that happen? It seems like just last week we were waiting for Aynsli to arrive, and now here we are, almost 9 years later. With a whole crew!

Feeling tired, but feeling blessed. Grateful for this sweet family. Grateful for my sweet husband!

My baby girl turns 8!

It is hard to believe that this sweet little baby is turning 8!

It seems like just yesterday I had her, and started that amazing, incredible, sweet, emotional journey of motherhood. I still can't believe 8 years have passed.

For a couple months now, Aynsli has wanted her own room for her birthday.  Last year at Christmas time, right before Zachariah was born, we moved all 3 girls into one room, to move my office to make a boys room for Zachariah. (Little did we know it would be nearly a year before Zachariah would actually use that room---but that is a post for another day)  

So we started working on a plan to put Aynsli in my office and make it both.  Well, lets just say that mom no longer has an office, and there is still a large pile in our bedroom corner that is trying to find a home.  We worked hard to get everything done for her birthday.  We painted a wall, painted a dresser, moved a bed and a couple other furniture pieces, and bought new bedding in preparation for the "reveal".

So early this morning, we let her in to her new room.  I think she was quite pleased, and her sisters love it too!  The trick now is going to be keeping them out of there!

Instead of a party, Aynsli wanted to go to breakfast with her two best friends.  So we took them to Black Bear Diner.  If you haven't been there, go.  Our kids love it, and if you walk out of there hungry, it is your own fault!  The food is good, the people are friendly, and on Saturday mornings they have an awesome balloon guy who makes some pretty impressive creations.

This is a picture of my breakfast---and you can't even see the pancakes on another plate.  Needless to say, we brought some home in a box.  The kids all had a great time---they all got ice cream with their breakfast, and a balloon too.

8 candles on her cake already!  Happy Birthday Baby Girl!

Zachariah's New Ear Wear

Zachariah never did pass a hearing test in the NICU.  They did two of them, and could never get a good reading.  The results they did get suggested that there may be fluid in his ears.

The way to relieve the fluid is to do tubes.  But they couldn't do tubes until his breathing was more under control.  There was so much going on, that we didn't really worry about his hearing.

 He got his tubes when he was 6 months old.  They said we had to wait at least 4 weeks after tubes to have a hearing test.  So we waited 4 weeks and had a hearing test.  They couldn't get a good result.  The fit wasn't good, his breathing was too noisy.  We didn't worry too much, because he responded so well...even better after tubes.  Another month went by, and we did yet another hearing test.  Same result...couldn't get a good read, he is too noisy, wouldn't sit still...blah blah blah.  So our ENT said that the best thing to do would be to do an ABR while he was already under for his cleft palate repair.  So that is what we did.

On December 4th he had his palate repair.  (Someday hopefully I will go back and post about that one...) His surgery went quite well, but we were slightly surprised to find that Zachariah did indeed have a hearing loss.  It is a fairly mild one...he hears normally in the middle tones, but doesn't in many of the low and many of the high tones---which is where a lot of speech sounds fall.  Our audiologist said that it is mild enough that if he already had a speech and language base, they probably wouldn't address it.  It would be more annoying to us that he isn't hearing us speak, than it would be to him in understanding...BUT, since he has no speech and language base, it needs to be addressed.

So, 9 days after his surgery, we met with the audiologist to be fitted for hearing aids.  They did ear molds, which have to be replaced every couple months as his ears grow, and we picked out the pricey pieces he wears behind his ears.  There isn't anything cheap about this "accessory".  We went on January 7th to get them fitted.  He did really well considering.  We are still working up to wearing them most of the time, and most of the time he does well wearing them.  And he is hearing normally in all tones with them.  We don't necessarily notice a difference, but if it helps with his speech and language development, we will press forward!

What a trooper this kid is!

A New Year!

So, it is January again.  Time to make renewed resolutions to do better with our blog.  Lets hope I can stick to it better than I have in the past.  Hopefully this year will be much calmer than last.  I think we are due for some calm.  Hope your year is wonderful too, and that you check in often. And call me on my slackiness...if that is a word.

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!