Overheard in the White House today

Me:  "I need a vacation from you nagging me."

Erin:  "Good luck."

Feeling guilty about the way I'm feeling

I know someone whose wife's labor was induced and gave birth recently. It got me thinking how cool it must be going to bed one night not being a parent but knowing that the next day you would be.

I've always resented that we missed out on a lot of the fun pregnancy stuff. Three months worth, in fact. No countdown to the due date. No sitting on pins and needles waiting for labor to begin. No putting final touches on the nursery for baby's arrival. Not having Erin being wheeled out of the hospital in a wheelchair with the baby. You get the picture.

Ours was a different experience for sure. Several months of worrying whether we'd reach the point of viability due to the problems we were experiencing. Multiple doctor visits each week. On bed rest for a month. In and out of the hospital. Being told that Zachary would weigh three pounds at birth if we were lucky. Lucky, really?

I realize that I shouldn't be feeling the way I am feeling. We are so blessed that Zachary made it to 26 weeks and somehow managed to survive the myriad of life-threatening problems that he faced during his eight months in the hospital. But I still get pissed sometimes.

I'm tired of having virtual strangers in and out of the house at all hours taking care of my baby because he has to be watched 24 hours a day. I'm tired of feeling like I'm being judged by others because of the choices I make regarding his care. I'm tired of not being able to take him out and show other people how proud we are of him because we're terrified of RSV. I'm tired of the medical equipment and supplies and rigorous routine of medicines, breathing treatments, therapies, and other medical crap that consumes the very limited time that just the three of us spend together.

I'm just tired, literally and figuratively, and feeling bad that I feel bad. But sitting here looking at my baby boy sleeping and knowing that he is happy and doing remarkably well makes it better.

What a difference a year makes

Funny thing happened the other day.  We were talking about putting up our Christmas tree the day after Thanksgiving and I thought it would be nice to get an ornament that said "baby's first Christmas."  Took me a minute to remember that this will be Zachary's second Thanksgiving and Christmas.  We sort of missed the holidays last year since we were several months into his ultimate eight month stay in the hospital. 

And what a difference a year makes. 

This time last year he was critically sick with a blood infection that was threatening his life.  His body had stopped ridding itself of fluid and his organs were starting to shut down.  Although the doctors had maxed out on the medicine and respiratory support they could provide, his condition kept worsening.  We were told it was almost time to turn off life support.

Then the most miraculous thing happened:  He pooped and peed.  Not normally cause for celebration.  But his bowel movement and urination was a sign that his body was still functioning and giving him a fighting chance.  The doctors still weren't too optimistic about his chances, but something told me that he had somehow turned the corner so to speak and was going to pull through. 

We had some very rough patches over the next few months, including episodes in which he stopped breathing and had to be resuscitated and several serious intestinal infections.   But, perhaps illogically, from Thanksgiving on I was confident that my little guy was going to make it.

So on this Thanksgiving we are thankful that Zachary is happy and getting healthier every day. Although we were told numerous times that he wouldn’t survive or could have severe physical and developmental problems, he has proven everyone wrong and is home and thriving after 249 days in the hospital. 

We’re also thankful for the talented and compassionate doctors and nurses who cared for him and for his toughness and determination in the face of such long odds. We’re also thankful for all the support we’ve received from family, friends, and strangers who have helped us navigate this strange and difficult journey called prematurity.

And we pray for all the preemie miracles out there and give thanks for their perseverance and courage in continuing to overcome their early births.   

Prematurity Awareness Day

The March of Dimes estimates that one million babies worldwide died this year because they were born too soon and 12 million more are struggling to survive because of their premature birth. 

We certainly have a special appreciation for how staggering these numbers are and what they mean in terms of day-to-day life.  Those of you who have helped us through these past 13 months certainly are aware of the impact premature birth has both on these babies and their parents. 

We thought this would be an appropriate time to say thanks to all of you who have thought of us, prayed for us, comforted us, fed us, and supported us as we have navigated the battlefield that is prematurity.  Your kindness and friendship has made an immeasurable impact on our lives and helped us better care for Zachary both in the hospital and now that he is home.  Words seem insufficient to express how much you mean to us or how thankful we are for your generosity.

So on this Prematurity Awareness Day we'll be thinking of you and counting our blessings as Zachary continues to overcome his prematurity.  And we'll be saying a prayer for the babies who are fighting this fight and for those whose fights have been lost.  May God bless them all.

Odds and ends

Been a while since I last posted . . .

Zachary now weighs 14 pounds.  He is gaining weight, but rather slowly.  His Z-score (yep, that's really what it's called), or how far his weight is from the mean for kids his age, is -3.8, which is up from the -4.2 several weeks earlier.  Not sure I really understand what that all means.  Just know that when they graph his weight he's not even on the graph. 

He's off the ventilator completely during the daytime now.  He still uses the vent at night and requires oxygen nearly continuously, but the fact that he can breathe on his own for long stretches is good news for sure.  And as Erin marvels, we're not sure how a kid with such bad lungs has as much energy as he does.  He squirms and wiggles nonstop and jumps in his bouncy contraption for hours.  We are expecting him to be admitted to the hospital sometime in the next month for a sleep study to determine whether he can keep his lungs inflated and properly oxygenate his blood at night without the pressure provided by the vent. 

Got some great news at the last pulmonology appointment.  They told us he could stop wearing the apnea monitor at night.  That's the machine that shrieks when the heart stops or breathing ceases. It is great for him because it necessitated wearing a belt around his chest to hold electrodes in place.  And good for us since the docs don't seem concerned that he might randomly stop breathing at night.   

His feedings aren't going as well, unfortunately.  He was taking most or all of his bottles by mouth during the day but now he is lucky to finish half. We give the remainder through his button (the feeding tube in his stomach) when he can't down the whole thing.  Also been trying to get him to taste people food like bananas and pears and applesauce.  He's not a big fan, though he'll take a few small tastes occasionally.  Looks like this feeding thing is going to take some work.

Mommy and daddy are doing well.  We are tired most of the time but thankful that our little munchkin man is doing so well and keeping us on our toes.  The nursing situation had been relatively stable the past month or so, but that's going to change soon when we lose our primary day nurse and our primary night nurse takes some time off.  Looking forward to the holidays though. 

That's all for now.

Prematurity Awareness Month

http://www.inspire.com/static/inspire/reports/inspire-preemie-nicu-narratives.pdf

November is Prematurity Awareness Month.  Thought I'd share a very insightful report about surviving the NICU experience and parenting a preemie.  We certainly can relate with many of the experiences that these parents have shared. 

Happy birthday

We celebrated Zachary's first birthday today at the park with some family and close friends.  Hard to believe it has been a year since he was snatched from the safety and security of mommy's womb and plunged into a world for which he was most certainly not ready. 

We have been blessed beyond belief this past year, primarily because this was a milestone we were told so many times we would not see.  One of the respiratory therapists who cared for him early on told us today that he was the sickest baby he's ever seen who has survived.  And he has more than survived; he's thrived. 

He's doing better than many babies born of similar circumstances.  He spends about half his days off the ventilator on humidified oxygen.  He takes part of his bottles by mouth.  He sits up and rolls over.  And he smiles a smile that makes everything seem right.  We're told the day will come when his lungs are more good than bad, just how soon is still not known. 

If there's anything I am sure of it is that he knows he is surrounded by people who love him unconditionally and would do anything for him. I only wish we could give him the one thing he needs most; lungs that are undamaged from the battering of high frequency jet ventilation.

The past year has been filled with challenges for sure.  But having such a wonderful little boy in our lives has been worth every agonizing moment.  And the one ahead holds the promise of a healthier baby and happier parents. 

So happy birthday, my sweet son.  Daddy loves you more than you will ever know.

To my beautiful boy . . .

A day at the doctor

We spent the day at Children's National Medical Center for a couple appointments.   

The ENT surgeon who did the tracheostomy said he'd give Zachary an "A" for how good his neck looks and how well we've taken care of it.  He said most kids in this situation have their trachs until they are about 2 years old and they no longer need supplemental oxygen.  So that's about another year.  They are quick to say that all kids are different so it could be sooner or could be longer.  Too early to tell right now for sure.

The pulmonologist thinks he's making steady progress as far as his lungs go.  He'd like him to be on the ventilator less and need lower levels of oxygen.  We will be trying to wean both over the next month.  The longer he needs the additional oxygen and pressure support to keep his lungs inflated the longer he's likely going to need breathing assistance.

We were discouraged to hear he only weighs 12 pounds, 14 ounces, just two ounces more than a couple weeks ago.  He needs to grow as much and as fast as he can his first two years, which is the optimal time for lung development.  It worries us that he's so small and that at his size even a cold or minor illness could put him in the hospital for weeks and jeopardize his pulmonary situation, requiring him to be on the ventilator longer.

The good news is that he will again be able to use a speaking valve, which caps his track so he can make sounds.  This one will have a special oxygen attachment so he doesn't desat while he's using it.

So all-in-all, a pretty good report.  Just need to grow some lungs, and fast.

The sound of silence

Hello darkness my old friend, I've come to speak with you again . . .

I am reminded of the Simon and Garfunkel classic as I sit here in the dimly-lit hallway outside Zachary's room listening to the symphony of sound churned out by all the machines keeping him alive.  I don't really even notice the noise so much anymore.  It just serves as the soundtrack for the conversations I have with myself on nights like this when it's just me and them.

The obvious topic is when will Zachary get better?  Will he have any physical or developmental problems because of his early birth?  How long wll he be on a ventilator?  Is he missing out on his babyhood because of all the medical crap he has to deal with?  How can he be so happy?  How is it that we are so lucky to have such a perfect son?

But there are others. 

How will we get through this?  Can we endure the physical and mental toll of staying up all night several times each week (and Erin being by herself during the days) when our nursing shifts are unfilled?  Can we survive on one income?   Do we even dare consider having another child?  Will our marriage endure?  When will Florida State win another national championship? (I was thinking about that tonight, anyway). 

Today was a good day though.  We had a date night tonight.  Played mini-golf.  Went to Ruby Tuesday.  Shopped at World Market.  Got ice cream.  All in two hours.  Tried to watch the FSU game when we got home but momma was tired and baby stayed up past his bedtime.  Maybe next time.

Just me and my thoughts for the next six or seven hours.

A walk in the park

So here's the happy family today in Old Town at a park along the Potomac River.  We had a picnic with some friends who helped us with all the equipment.  See below:

It was Zachary's first expedition out to somewhere other than the doctor or hospital.  He did great.  He saw some airplanes and met a bomb-sniffing dog who was patrolling the waterfront.  It was good for all of us to get out of the house and enjoy the sun and fresh air. Hopefully we'll be able to get out and about a few more times before the weather gets too cold.

Like father, like son



This is what I looked like 39 years ago -- and what Zachary will
look like 39 years from now.



Why I love you buddy . . .

1.    Because you love me.
2.    Because you smile at me when I kiss you.
3.    Because you laugh when I make funny faces.
4.    Because you look like me.
5.    Because it is a miracle you are alive.
6.    Because you are so cute.
7.    Because you are so happy.
8.    Because you are so tough.
9.    Because I am your dad.
10.  Just because.

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 . . .