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!  : )