Ups and Downs

So this parenting thing isn't so easy.  I don't know what raising a healthy full-term baby is like, but parenting a micro-preemie who is on a ventilator because he can't breathe on his own and who needs round-the-clock care is EXHAUSTING. 

You can never get comfortable or complacent because reality will smack you in the face.  Like just now, the pulse ox (contraption that measures his heart rate and oxygen saturation of his blood) alarmed because he had secretions that needed to be suctioned.  But mom and dad forgot to put a suction catheter on the machine earlier.  Oops.  Momentary panic.  Nurse who just arrived ran up and located said catheter and crisis was averted. 

Or like this weekend, when Zachary had respiratory distress and ended up in the PICU, or Pediatric Intensive Care Unit for those of you whose lives don't revolve around doctors and hospitals, because of a staph infection and viral pneumonia.  The episode put him back on the ventilator full time, at least for a few more days.  And he's getting more oxygen and pressure support too.  We were lucky though because he was only there for about 72 hours. 

Got some good news.  Z-man weighs 12 pounds, 7 ounces now.  So he is gaining some weight.  And he got a "button" last week, so he doesn't have the long tube hanging from his stomach now, just a small snap that we can open and close when needed.  And next week, if all goes well, we may get one of our favorite nurses as our primary day nurse. 

So we've had some good days and some bad ones.  The roller coaster ride we thought was over because we left the NICU continues.  But we are at home and our boy is happy and headed toward healthy.  Just hope he gets there sooner rather than later.

Baby's first earthquake

Zachary experienced his first earthquake today.  Not sure he even noticed.  Mom and dad sure did.  Once we realized what it was we covered him to make sure nothing fell on him.  Only had a few pictures fall off the walls and bookshelves.  So we all escape unscathed. Though it was a terribly unnerving experience for our cat, Sammy.  Worse than the earth shaking was the email we got shortly before notifying us that our night nurse who works four shifts each week is leaving soon.  I see a lot of sleepless nights in our future.

Early morning ramblings . . .

Not a good way to start the week.  It's 1:10 a.m. on Monday morning and I'm sitting in the doorway of Zachary's nursery listening to the whirl of the ventilator and hum of the oxygen concentrator because our night nurse called out again.  We lost our day nurse last week too.  So we have no nurse most of the week.  We'll get through it though, as usual, just with a little more caffeine and a little less sleep. 

I always thought that things like this happened to other people.  I didn't even know anyone who had a preemie before Zachary was born.  I'm not even sure I could have told you what a preemie was.  Now I find it difficult to communicate with people who operate outside this weird little world of ours.  How do you explain this?  And do others really want to understand what this life is like?

When someone asks how Zachary is doing I almost inevitably respond with an enthusiastic "great!"  The alternative is to start vomiting medical information about his condition and complaining about the nursing, like this weekend when the nurse turned the ventilator on but didn't select the settings so he was breathing in the same breaths he had just breathed out.  We were home to catch the mistake early on before any damage was done, fortunately.  (See, I told you).

He is doing very well, for the record.  He's adjusted to home life quite nicely.  He loves all the toys many of you have gotten him.  He's curious about our cat, Sammy, who has yet to really introduce himself.  We've only had a couple of instances in which he started to struggle because the tube in his trachea was getting clogged with secretions.  That's why we are awake all night.  And only one emergency trip to the hospital.  We really couldn't have asked for a much better transition from the hospital to home.

But this life isn't easy. 

Not gaining much weight

Zachary had a routine weight check today.  The results were not so good.  He weighed in at 11 pounds, 10 ounces.  That's just one ounce more than he weighed two weeks ago.  He's gaining about 2 grams per day compared to the 25 per day they want him to gain.

Not sure what's going on, but the doctors are probably going to recommend keeping him on the ventilator more each day.  Right now he's on the vent for 16 hours everyday and on straight oxygen for 8. 

Let's hope the next weigh-in goes better than this one.

At least they haven't burned the house down

If you're looking for a positive or inspirational post, check back tomorrow, because this isn't it.  We've been home from the hospital nearly two months now, and my impression of home nursing is as follows:

1.   Sometimes they show up late.
2.   Sometimes they don't show up at all.
3.   Sometimes they sleep instead of caring for my son.
4.   Sometimes they lie.
5.   Sometimes they grind Cheerios and chocolate into the carpet of the nursery.
6.   Sometimes they don't know how to use the equipment.
7.   Sometimes they don't know what to do in the event of an emergency.
8.   Sometimes they don't silence the alarms.
9.   Sometimes they quit without two weeks notice.
10. Sometimes they call out right before their shifts -- like TONIGHT.

Don't get me wrong:  we have had some very dedicated and talented nurses who have taken care of our son who we like very much.   And we need them.  We can't take care of him ourselves, at least not right now.

But there have been some not so good ones.  And it is so weird to have your home be someone else's workplace.  Talk about an invasion of privacy, especially at night.  I can't wait for the day they are no longer needed.  Until then we'll keep demanding the best because our son deserves better than he's getting.

So one or both of us will be up all night again tonight.  At least there's no stranger here with us. 

Up all night . . . AGAIN!

It's going to be another long night . . .

Our night nurse couldn't make it tonight, so I am  going to be pulling overnight duty, again.  I can't complain, though, since Erin does this way more often than me.  It's actually not so bad.  At least that's what we keep telling ourselves.  Medically speaking, we just have to give him some medicine in his feeding tube at midnight and hang his overnight feeds every two hours.  Staying awake is the hard part.  (Something some of our nurses can't seem to do).  I'll be grouchy tomorrow, but I'm a tired, fat, almost forty first-time father so I'm crabby most of the time anyhow.

This might be a good time for a short recap for those unfamiliar with Zachary's history.  He was born at 26 weeks gestation, weighing only 1 pound, 9 ounces.  He was what's known as a micro-preemie, the smallest of the smallest.  The odds of survival at his size and weight weren't great, especially since his lungs were all but destroyed by the ventilator that kept him alive for so long.  We were told on multiple occasions that he wasn't going to make it or that we would have to turn off life support.  He did and we didn't. 

He was hospitalized for eight months.  He has a tracheostomy (a hole in his neck through which a tube has been placed) to help him breathe.  He is connected to a ventilator about 2/3 of the day to provide pressure support to keep his lungs from collapsing and ease his breathing.  (He just gets pure oxygen otherwise).  He also has a feeding tube that was surgically placed in his stomach so we can give him the required amount of breast milk he needs if he can't take it all by mouth.  He also had his intestines disconnected for a while because his plumbing wasn't working and the resultng backups were making him sick.  Fortunately, the pipes have been put back together and everything is flowing freely. 

He came home on June 20th.  Our lives haven't been the same since.  He has rigid routine of medicines, therapies, treatments, feedings, doctor's appointments and other assorted must-do's and need-to-do's that keep us on our toes.  We are fortunate to have home nursing for 16 hours each day, when they show up.  (There'll be more posts on the nursing later).  His nursery is really a small hospital room.  He is attached to many machines that monitor his vital signs and beep, buzz, and bleet when there's a problem -- and more often when there's not.  We've been to a bunch of doctor's appointments, and taken a couple walks around the neighborhood in the stroller.  That's about the extent of our venturings, though, since Zachary travels with no fewer than two adults -- usually three -- because he has so much equipment that needs to be carted around in case of emergency.   

What's the tag line from that show John and Kate Plus 8: "It's a crazy life but it's our life?"  That's us for sure.

Follow Zachary's adventures at the White House

So this is my first ever blog post. 

It's about my first ever child, Zachary, who was born three months prematurely and spent 249 days in the hospital before finally coming home to our (me and my wife Erin's) house, the White House.  Now that there's a preemie in the White House our lives have been turned upside down.  We hope to share our highs and lows and provide some insight on the joys and challenges of raising a baby who was born too soon. 

Until next time . . .