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.