I wonder if anyone looks to see (is it even visible?) what time I post most of my blogs?  Does anyone notice that it’s never before (at least I think it isn’t) midnight??  Usually closer to 1am, I’m sure…I haven’t looked.

Regardless, I write these late at night/early in the morning, however you wish to look at the midnight-2am time-frame.  If it’s before daylight, it’s still “night” to me, so that’s what I go with!  There is a reason that I don’t blog during the day.  It’s  name is Xavier. 🙂  If I were to try to organize my thoughts about any subject and put them on this screen at that time it would look something like, “I’m here to Mom about today’s subject which has to do with he’s hitting me and how that affects the stop it I hate you of your life.”  Yeah, not too easy to make out, is it???  Welcome to my day-time life.

I love my children, I really, really do.  They are what ties me to this world more than anything else.  (I’ll blog about that all someday, too, I’m sure.)  But summer is very difficult for me.  Even when I *was*working, I had summers off (YAY working for the school district!) and that was GREAT when it was just Sabrina and I during the summer.  We’d go swimming….or she would go swimming and I’d lounge around trying to become “one of the club” at the pool.  (Yeah, didn’t happen then, either…guess they don’t like fat, opinionated women in their club…go figure!)  It was relaxed and lazy…everything summer should be when I’m not having to work!!

Then we had “the boy”.  LOL  I say that in jest……..mostly.

To say he was “unplanned” would be skipping the part of his conception where we weren’t using any type of birth control for about three years. 🙂  I, however, was VERY good about “natural family planning”…at least, up until I got pregnant!  Seriously?  I can’t use any form of hormonal birth control (my blood pressure’s not good) and I can’t use an IUD (previous history of an STD ((thanks first guy I ever slept with!!!))) so we were stuck with tubal ligation or vasectomy or…condoms.  Well, after a few years of those, we got tired of them.  My cycle is rather normal, so we went with the day counting.  Since we’d *tried* to get pregnant with Sabrina, I knew “fertile” days vs the less so, and we went around those.  I  must have miscounted…or more likely didn’t care at that exact time and figured for SURE one slip wouldn’t hurt!!!

Xavier’s was a messed-up pregnancy from the beginning.  Mom was dying of cancer.  I didn’t WANT to be pregnant, really, and mark REALLY didn’t want me to be.  Sabrina was the only one in the house who was happy….she figured it would be a sister!  I tried, for three months, to convince myself and Mark that “I can’t be pregnant.  I don’t feel pregnant.  I can’t be pregnant!”  He finally went and bought the test.  I was.  My first words were, “Son of a bitch!!”

It wasn’t an easy pregnancy….there was TONS of tests because of my blood pressure.  Ultrasounds (it’s like a flip-book of growth!!), non-stress tests (which, apparently he failed often, I find out now), and check-ups.  Eventually, at my 36 week check-up/ultrasound they tell me he’s not grown from the month before and (surprise!!!) there’s no amniotic fluid.  Time to go in for the c-section…NOW!!

Well, the “NOW” had to wait for a c-section that was more “urgent” than mine….Xavier wasn’t in distress…just not in a great environment.  They finally took me in, took 10+ tries at the spinal (the dr. said that he’d done a few dozen of them since he’d come on 18 hours previously!) before my little guy made it into the world at a whopping 4 lbs. 10 oz. and 18 inches.  The hospital always has NICU staff on-hand for c-sections…it’s their policy.  Xavier’s APGAR score (ask your wife if you don’t know what that is….if you’re female and don’t know, google it! LOL) was 8 at one minute and 9 at three minutes.  He was good to go.  The stapled me up, put me in my bed, handed Mark our son, and away we went to live happily ever after!!

We got to my room and played “pass the baby” as any women who’s had a child in the last billion years knows about.  I finally got to hold him and decided to see if he was hungry, little bit of a thing he was!  I’d decided while pregnant that I wasn’t going to nurse…it hadn’t gone well with Sabrina and I really didn’t want to relive that if I could help it.  I put a nipple of the tiny little bottles they have and he drank a couple sips before he started to….not breathe.

As I held him, he turned darker and darker.  I kept saying, “No, this isn’t right!”.  None of us in the room thought to hit the red “panic” button….Mark ran down the hall for help.  I blew in Xavier’s face to make him take breaths while waiting.  It felt like hours.  It was seconds.  The nurses were there, scooping him out of my arms and putting him under the lights, checking him out.  Then he was whisked away to the special care nursery.  Mark followed.  I layed in bed, dazed and drugged.

Next I know Mark is telling me that they’re taking him to the NICU.  WHAT?????  What’s wrong???  “I don’t know.”  The transport nurse shows up with Xavier in a little “box” holding an oxygen mask in front of his face and tells me she stopped by so I could see him again before they take off with him.  I was too drugged to be scared more than “concerned”.  Mark went with them.

Here’s a good time to insert the fact that Xavier was *supposed* to be called by his middle-name….Declan.  It was the deal Mark and I had made.  He named Sabrina, I chose her middle name, but we’d use her first name.  Mark chose Xavier’s first name, I chose his middle…but he was to be called by that.  When Mark got up to the NICU with the staff, he couldn’t remember how to spell “Declan”…but he knew “Xavier” because he’d chosen it.  Sooooo…that’s how my “Declan” became my “Xavier”!

Mark came back down to my room later…Sabrina had been sent home with Bernie (God, bless her!) for the evening.  I’m sure he told me what was going on…but drugged as they keep you the first day, I couldn’t tell you what he told me.  I know I demanded to go see him that night.  I had a nurse who was sympathetic and allowed me to try to get up and walk at 7 hours post-op instead of the standard 8….and made a deal with me that if I could at least transfer to the wheelchair, she’d let me go.  I went.  I sat in my wheelchair next to him, touched him….but it’s all hazy.

The next day was tough.  I was up with him (yay for wanting mom’s with c-sections to walk!) when they tapped his left lung the first time and drew out a good 60+ (I believe it was closer to 70) cc’s of air from the pneumo on that side.  Simply said, he’d “popped his lung”.  They told us that they’d see if it came back, but if it did, they’d have to put in a chest tube.  It would mean a ventilator.  We agreed.

Then, the next day, the right lung went to crap.  Chest tube on that side, too.   Then the arterial line…in what would become his bellybutton.  No “food”…just TPN (look that up, too, I don’t feel like explaining! LOL).  IV stands hold 4 meds per….he had two stands. 

Day 3 brought the peds cardiologist for a definitive diagnosis.  He had “PPHN”  or persistent pulmonary hypertension of the neonate.  Basically, the little “flapper” (as hubby calls it! LOL)  between the heart/lung that’s there when they’re still inside mom didn’t want to give it up after he was born like they normally do.  His was restricting blood flow and not allowing the lungs to fill like they should.  He’d now developed PIE (pulmonary interstitial emphysema) in the left lung.  It was touch-and-go…but the doctors told us to let him have some time to heal before we pulled support.  (I didn’t want my child to suffer if it was going to end badly).  We were told that there WAS treatment….but his was a pretty severe case and if it DIDN’T work, we’d be transferred to Iowa City where they could give a higher dose of, essentially, Viagra.  (It opens blood vessels, that’s how it works 😉 )

By this time I was being discharged and couldn’t imagine being away from Xavier…but his room only allowed one person to “room in”.  One of the nicest women I’ve ever met (I wish I could remember her name and not just her face!!) told us about Ronald McDonald House, right across the campus.  We “moved in” that afternoon.

For anyone who hasn’t dealt with RDH or known someone who has….it’s where we could live for $10 a day (IF you can afford it) so you’re right there with you child who is either in-patient (as ours was) or getting treatment out-patient (as one of the friends Sabrina made while there was).  The hospital knows how to reach you at all times, if they need to.  Most night-time meals are furnished (at least at the DSM one) by volunteers and families of former patients.  Breakfasts, lunches, and what dinners AREN’T provided can be private (you have a place for your own food) or communal (I cooked a huge pot of pasta, sauce, and meat for everyone one night).   And mostly, it’s just nice to know that everyone there is going through the same thing you are….you’re worried about your kids.  I spent many a night sitting on the wall outside the place having a smoke with a man who’d had twins a couple of weeks before X came along, just talking about all the stuff they’d been through.  And they celebrate your victories with you!!  When that couple that had had twins made it to “car seat testing” we threw a party! LOL  And they stopped over for everyone to see them before they headed home.  Life in RDH is different…but it’s wonderful, too.

The nurses and doctors told us that it was normal for babies like Xavier to make one step forward and two steps back.  As we drew near his time to come off of the vent and go onto C-PAP again, we were nervous, but ready for the trip back onto the vent when it didn’t work out well.  He did wonderfully.  When it was time to try from C-PAP to humidified O2, he did wonderfully.  When it was time to go from humidified O2 to room air…..not so much.  LOL  He switched from TPN to tube feedings wonderfully, too…except he didn’t like the NG tube (thru his nose down to his stomach) very much and would pull it out as often as possible!  Finally, on a day he’d pulled it 4 times in one shift, they decided to try a bottle feed on him.  I got the call.  I RAN over.  They gave me some hints on helping him adjust to the bottle.  He didn’t really need a lot of help other than to push his lips a bit farther forward.  He did great at that, too!  He was gaining weight!!!

At 4 weeks, one day, we brought him home.  The hospital we were at require an infant CPR class before they discharge.  I’ll forever be grateful that they do.

At 6 days home we had an appointment with his pulmonologist.  I was getting him ready to go.  We’d been off O2 all day and I was gloating to myself that I’d be able to tell the dr that we were ok without it!  I put him in his car seat, waiting for Grandma Shirley to come so we could head out.  I looked over, he seemed pale.  I went closer.  “Xavier?”  I gave him a little nudge.  Nothing.  “XAVIER??”  Nothing.  I unbuckled him…he was limp. 

I fully pulled him out of the car seat.  He was as limp as a rag doll.  I laid him out in front of me on the carpet.  I checked.  He wasn’t breathing….

I went into CPR mode.  I gave him a breath.  Nothing.  I gave him another breath.  A small sound.  I gave him a third, praying to God that I wouldn’t have to do chest compressions ’cause I didn’t think I’d be able to do that…it was too much to ask!

He cried.  I grabbed my phone and called 911. 

In class they’d told us….Just skip it all and tell them, if you have to, “I had to do CPR.” that will get them on their way!  Boy, does it! LOL

In the mean time, my mother in law showed up and stopped short when she came in the door to him laying  across my knee, the look of panic on my face, and my shaking like a leaf.  I explained as quickly as I could what had happened.  She helped me keep him awake.

The ambulance got there WAY fast (apparently when they hear “CPR on infant” it moves them right along, even when you live in the country!) and quickly checked him over…he was pissed off and crying at the time and they’ve told me since then it’s the best sound to hear when that type of call comes in! 

We had to go to our local ER….no other choice…they had to make sure he was “stable”.  As they were trying to get an IV in, he stopped breathing again on them.  Helicopter was called, but because it was rainy and near-freezing that day, it would be ground ambulance.  I got to ride.  I about puked/passed out on the way in.  The girls were great in there with me, though.  Xavier slept, soundly but breathing just fine, all the way there! LOL

Two days in the hospital later we find out it was reflux.

Dealing with that was an issue, too…..but for another time, I think.

Mainly…..I’m glad my son is as feisty and hard-headed as he is because it’s what got him through the difficulties that would have taken a lesser baby.  Plenty have died from the same things he battled well before he will ever remember.  But I’d LOVE to have the hard-headedness lessen as he gets older!  He’s still the same “baby” as he was almost three years ago, still fighting everyone and everything that crosses his path.  I laugh and say “I blame the NICU nurses for making him this way!” but I really wonder how much of that “fighting spirit” that they always commented on is what drives his behavior today?  And how can I lower it without breaking his spirit???

 
Advertisements