The man in the mirror

This is a difficult post to write.  I've never been big on self reflection, but I've spent more and more time over the past several months thinking about who I have become since Zachary was born.  And I don't like that person.  

I've always been pretty laid-back.  Never got too high or too low emotionally.  Worked hard.  Enjoyed my free time, even if I was just watching football or having a few beers with friends.  Tried to be a good friend, colleague, and husband.  Got along with most everyone.  Had plenty of faults for sure (no cracking wise from the peanut gallery, please) but I tried to be a good person and enjoyable to be around.

Not anymore.

I feel like I'm not the same person I was 16 months ago.  Now I am mostly tired, angry, frustrated, and generally better to be avoided, especially if you have anything to do with the care of my kid.  I find myself being rude, condescending, patronizing, dismissive, and outright hostile to some of these people, though in my defense sometimes with good cause. 

I feel like I don't even know how to relate to those who aren't intimately involved in Zachary's day-to-day care.  That's my life.  That's who I am.  That's what I do.  I don't have any free time to speak of.  And when I do, I'd rather crawl into bed more than anything else. 

My poor wife too often bears the brunt of my wrath, even though I can't imagine any mother more dedicated to their child's well-being than she is .  (She pumped breast milk for more than 16 months just so Zachary could get the benefit of all the antibodies and healing properties it contains).  She researches therapies and treatments for his medical complications and very often knows more than the so-called experts in their fields.  Zachary couldn't be any luckier to have her for a mommy.  She gets up early and stays up late to make sure he's being well cared for, even when a nurse is here and she could be sleeping.

And she does all this without my best effort, sometimes.  I found out last summer that I have this autoimmune condition called Hashimoto's Disease.  My body is making antibodies that are harming my thyroid gland, which is contributing to tiredness, weight gain, and a general slowing of body functions.  My immune system is also for some unexplained reason overreacting to little things like scratches or bumps and bruises, causing me to break out in hives and sometimes have severe swelling and joint and muscle pain.  I had to go to the hospital twice last summer because my airway started closing, so I now carry any EPI pen with me, or at least I'm supposed to.

I'm taking a bunch of medicine for all this silliness, a side effect of which is, of course, fatigue.  So Erin sometimes has to do everything herself when I have an episode and crap out, which happens every couple weeks despite all the pills.  So I don't feel well too often, which pisses me off and makes my generally sour mood even worse.  I'd like to blame my unhappiness on something or someone else.  But that would be a cop out.  No one is making me feel the way I feel or act the way I act.

I feel guilty that I feel this way.  We are so fortunate that Zachary survived his early birth and is doing so well, even though he still has a long way to go until he's all better, if there is such a thing.  So many parents lose their preemies after only days or hours with them.  And some are caring for profoundly emotionally and physically challenged children, who are never going to get "better." They are the ones who need the real help, not people like us, who in all honesty have it pretty good. 

So my challenge is staying positive and remembering that God has answered my prayers to let my little boy live.  Maybe doing that will help me not sweat the small stuff so much and start feeling better about the man in the mirror.

Support TEAM ZACHARY in the March of Dimes March for Babies

http://www.marchforbabies.org/personal_page.asp?pp=4157841&ct=4&w=5302475&u=zacharywhite

Some of our friends have generously created a team to participate in the March of Dimes March for Babies, which is on May 12 at Nationals Stadium in Washington D.C.  If you are so inclined, please click on the link above to join us for the walk and raise funds to fight premature birth and help families of babies born too soon.  Or, if you can't walk with us, please consider donating to our effort.  Without the research supported by the March of Dimes, Zachary might not be here today.  Thanks for your help!

Milestones

Today marks the eight month mark since Zachary came home from the hospital.  That's significant because he also was in the hospital for the first eight months of his life.  So tomorrow he will have been home longer than he was in the hospital! 

Think he's happy about that?

Here's what he looked like the day he came home last June:

 

It's hard to believe that we will have finally been home longer than the hospital.  Seems like the time at home has sped by much faster than the hospital stay, not surprisingly.  And we've been relatively fortunate that he's only been readmitted to the hospital three times since his initial discharge.  Once for a respiratory infection and twice for bleeding from the trach, a still unresolved problem.  I guess if you add up the time from these readmissions he still has been in the hospital longer than he's been home, but I'm not going back and changing the post, so please play along with me. 

He's been developing a LARGE personality.  He doesn't hesitate to express his likes and dislikes.  Likes include "walking" around the room aided by mommy or daddy, trying to bear hug Sammy (our outlandishly large cat), grabbing the ventilator tubing, removing the oxygen attachment from his speaking valve, reading books, playing in his bouncy, and taking baths.  Dislikes include eating, diaper changes, going to bed, and not getting enough attention.

Speaking of large, Zachary now weighs 16 pounds, 8 ounces.  Not quite as much as Sammy, who tips the scales at 17 pounds, 2 ounces, but a long way from the 1 pound, 9 ounces he was at birth.  I still can't believe how big he is (Zachary, that is).  Though now that I think about it I can't believe how big Sammy is either.  Z-man loves the cat and sometimes gets a handful of whiskers or ears.  And despite his sometimes surly nature, Sammy obliges and waits until he lets go to make his getaway. 

Zachary wore shoes for the first time today.  Check them out:

What a big boy!  He's not a baby anymore, that's for sure.  He sits up on his own.  And though he's not yet crawling, he has a mean butt-scoot that gets him from here to there quite quickly.  Going to need to buy one of those fences to create a play area so he doesn't get into something he shouldn't when we're not looking.  He's also started pulling himself up on the furniture and anything else that works, like toys or mommy or daddy. 

Still waiting for his first word, though he babbles a lot.  Any guess what it will be?  I think da-da!



Detroit Free Press: Feeding tubes help kids flourish, but parents pay emotional price

http://www.freep.com/apps/pbcs.dll/article?AID=2012202120382

Interesting article about feeding tubes and the impact tube feeding can have on parents.

A year ago yesterday

Yesterday was the one-year anniversary of Zachary's tracheostomy surgery.    

This is what he looked like the day before the surgery:

This is what he looked like following surgery:

This is what he looks like today:



It was an agonizing decision to allow surgeons to cut a hole in his trachea and insert a plastic tube through which he would breathe.  And there are definitely pros and cons to a tracheostomy.  But he flourished after he got the breathing tube out of his mouth and all the tape removed from his face.  In retrospect, we wish we would have had the operation done sooner. 

We were told at the time that he'd likely have the trach for 18 months to two years.  Looks like he's going to have it a while longer than that until his lungs heal.  But his doctors are still optimistic that he will shed this too one day. 

Back from the hospital, again.

Yep.  That's right.  Had to make another trip to CNMC because of bleeding from the trach.  Took almost five hours to get admitted and finally got into the Pediatric ICU at 12:30 a.m.  Spent four days there with no bleeding so the surgeon called off the scheduled surgery just as he was ready to be wheeled from pre-op to the operating room.  Talk about a close call!

The doctor said he thought the risks of surgery (anesthesia, infection, bleeding) outweighed the risks of leaving things as they are for now.  He also thinks that the bleeding may not be from the tissue lump in his airway and instead may be from nicks and scratches near where his trachea branches to his lungs, caused by suctioning too deeply and with too much force.   If that's the case it is a very solvable problem, which is good of course.  The flip side is that it means someone on his care team has been F-ing up and putting him in peril simply because of laziness and inattention to detail. 

We spent a night in the main PICU with a bunch of other really sick kids before we got a private room.  Made us realize how well Zachary is doing despite all his challenges.  He was definitely the healthiest kid there but a hospital policy required him to be in the ICU because he's on a ventilator.  We were scared to death he was going to get sick from some hospital germs so we're happy he's home and seems back to normal.  

The experience that first night also made me wonder how we'd be coping if he wasn't doing so well or if he had some permanent and profound mental or physical disability.  There were so many broken kids lying alone in their beds who looked like they were in agonizing pain, and would be for the rest of their lives.  It got me thinking:  What would we do if one of those were ours? 

Would we be able to remain upbeat and optimistic if we knew things might not get any better?  Would we stay at his bedside 24/7 or would we have left him there by himself?  Would we question our decision to avail ourselves of the most aggressive life-saving measures early on when it looked like Zachary wasn't going to make it?  Would we love him the same?  I'd like to say I know the answers to those questions without hesitation but that wouldn't be true.  It would take some soul searching and deep reflection.   I pray for those kids though and hope their parents are at peace with the decisions they made. 

We also saw some of Zachary's doctors and nurses from his NICU days.  Everyone seemed shocked at how big he is and how good he looks.  And they all commented on how cute he is.  (They all said he looks like me, which is either really good for me or really bad for him).  We also got to chat for a few minutes with one of his old NICU residents, who was one of the finest doctors we've ever met.  She was so wonderful to us and him during his long hospitalization and was a tremendous and aggressive advocate for us.  We were fortunate to have had the benefit of her talents and compassion.   

So for now we are back home getting back to our routines and hoping we don't have to go back anytime soon.

Back from the hospital

Zachary had his procedure on Wednesday, which went well and was altogether uneventful.  He only had to spend about 36 hours in the hospital, primarily to make sure that he wasn't having any cardiac problems because of his pulmonary hypertension.  He passed with flying colors.  (What the hell does that mean, anyway?) But he was one mad kid when he got back from surgery because he was so hungry.  He ate more at one time by mouth when he finally could eat than he ever has before.

The doctor didn't take out the tissue blob that by his estimates is occluding between 30 to 40 percent of his airway.  He said it was preferable to wait since the mass is above the trach and not obstructing his breathing right now and removing it could cause more bleeding or other problems.  It could get smaller (or bigger) on its own so we're going to closely monitor it for any changes.  If it doesn't get smaller it will need to be cut out before the trach can come out since it then would be blocking a significant portion of his airway. 

This is what it looks like (it's the white mass at the top of the picture):

The procedure did reveal that he has no other structural problems in his trachea that could cause problems down the road, so hopefully it stays that way. 

He did get a new trach, though.  The tube on this one goes down about 6 millimeters further than the previous one.  Doesn't sound like much to me but apparently the extra length will help him ventilate better as he gets bigger and the distance between the hole in his neck and his lungs lengthens.  It also is made of silicone and metal instead of plastic.  He seems to be liking it so far.  And we've heard some different sounds since he got it, maybe because of the difference in tube size. 

And not to jinx it, he hasn't vomited since he got back from the hospital.  We've been barf-free for more than 48 hours, so WOW!

Finally, we thought it was funny that nurses other than his were standing outside his room looking in and talking about how cute he is.  But when you look like this, how can you disagree?