Thursday, February 4

Business Time

Okay, so this is something near and dear to my heart.

I'll first begin though with an update on my baby boy.

Bryce is such a strong little boy. He still has a fever but it remains at or below 100. He does have a cough that is getting worse but the doctor told us to expect this. I hate that I know he doesn't feel well. He coughs and then looks up at me with the saddest little, tired eyes. It breaks my heart, as I'm sure most of you are all too familiar with. I can only hope and pray that it will get better instead of worse as I'm seriously beginning to worry that he needs more oxygen due to this more and more frequent hacking.

All in all though I feel that Bryce is on the mend and continuning to once again prove his fierce toughness.

So to the business. A couple of things:

I tried unsuccessfully to find a link to this great story we saw on ABC news tonight. It featured Dr. Lee (the neurosurgeon who originally placed Bryce's VP shunt) doing a groundbreaking procedure to separate the two sides of a 16 month old Austin girl's brain, Aahlaya. The poor baby had "hundreds" of seizures per day. She's now home with her mom and thriving.

The doctors at Dell never cease to amaze me.

But I digress.

Which brings me to my other point.

The March of Dimes.

Do you know that before Bryce was born I literally had no idea what purpose the March of Dimes nor the Ronald McDonald house served? It's sadly true.

And now that I have first hand knowledge I am compelled to give back.

Premature birth is the #1 cause of newborn death in our country.

Though my doctors strongly suspect an infection caused Bryce's premature birth they have say nothing for sure. They insist that should I ever attempt to have another baby my pregnancy and care would be drastically different.

I believe it is imperative that we find out why premature births happen and how we can prevent them.

I have created a March of Dimes team, in honor of Bryce, that will be raising money for this cause. My goal is to raise $1,000. It is a meager goal but one I feel is only the beginning of a life long cause.

By supporting Bryce's team you can show that you care about this cause too. That you believe that although Bryce may be a preemie he is a lucky one that decades of medical breakthroughs made possible. That you want to be a part of the generation that saved millions of babies lives. That there is hope for future generations.

Bryce's team, BAM, will be walking in the March of Dimes on May 8th at Auditorium Shores here in Austin. We'd love it if you'd show your support by walking with us. And if you can't walk please donate. The money raised will support research and programs that will help moms like me have full-term pregnancies. What a thought! As well as bring comfort and much needed information to families with babies born too early.

Please, please, please help us by visiting Bryce's team website and contributing anything you can.

Wednesday, February 3

When we woke up early yesterday morning to go about our day Bryce seemed fine. He didn't seem sick. He didn't eat as much as usual and wasn't as happy as we're used to him being in the morning but I shrugged it off.

When Mary dropped him off to me at work yesterday afternoon he was sleeping, as usual. She noted that he hadn't eaten much and had taken only one long nap instead of his usual two short naps.

He was a little fussy when he woke up so I finished what I could, fed him a bottle and we headed home.

On our way home I called to talk it over with Caleb. That's when Caleb said he was feeling worse then yesterday morning, which was worse than the day before, which was worse than the day before. I heard, "I'm sick and contagious...blah, blah, blah."

So I told Caleb he'd have to sleep in the guest room and when I got home I fed Bryce and put him down on his play mat to play while I went about sanitizing and disinfecting every surface in our home. Next thing I knew Bryce had fallen asleep on his play mat. And I thought, that's weird, he never just falls asleep like that.

I finished disinfecting every knob, door handle, counter top, remote control, power button, appliance, faucet, bottle, nipple, pacifier and light switch in the house. I stripped all of the linens from Bryce's room and ours and set about washing them.

Then I went to pick up Bryce and put him in his crib. That's when I felt that he was burning up hot. I took his temperature and he was 101.4 under his arm.

I freaked.

I called Danielle and Lisa, two of our NICU primary nurses. Danielle said without a hesitation to take him to the ER at Dell. Lisa said call your doctor, they should have someone on call. Tiare, another of our NICU nurses, said over Lisa's shoulder to bring him in (bring because they were both working last night).

I did not want to take Bryce to the ER last night. I did not want to go back to Dell, not like that. The on call doctor for our pediatrician confirmed we should go to the ER because he could change drastically over night.

So at a little after 8 p.m. I began packing for every imaginable circumstance of ER inconvenience or germ exposure.

I packed up Bryce and an iced coffee, blankets, diapers, wipes, pacifiers, nipples, extra clothes, bottles, medical records and shot records and even a canister of Lysol antibacterial wipes. Imagine what a freak they thought I was walking into a hospital with my own disinfecting wipes. Hey, control what you can and, well try to control what you can't too - that's my mothering motto. For better or worse. Probably worse.

And so Bryce and I made the drive to Dell.

Caleb wanted so bad to go with us. I think he wanted to be there for me as much as he wanted to be there for Bryce. He knew it would be hard for me but I insisted he stay home. If he was in fact the reason Bryce had gotten sick I wasn't about to let him get another child sick too.

We checked in and due to Bryce's fever and high respiratory rate were immediately triaged and sent to a room. One disaster averted - no waiting room. I was beginning to think I might survive.

The doctor came in and looked him over. He was so sure it was RSV I was wondering why we were testing Bryce for it. But then he said due to Bryce's shunt he wanted to take extra precautions - i.e. chest x-ray, urinalysis, blood test and CBC.

Okay, I can handle this. After five months in the NICU and countless surgeries and procedures I was feeling pretty confident. Unreasonably so as I soon learned.

First we went back for the x-ray. I walked him back to the x-ray room where I was instructed to undress him to his diaper and sit him on a tiny bicycle seat that was sunken down into a hole in a small, counter-height table. Then I was to hold his arms straight up above his head so they could clamp a clear PVC tube around him.

The icing on the cake wasn't the yanking on his arms or his wiggling and whining but the honest-to-God leather strap that held his head in place.

I mean, this thing was straight out of a Hitchcock film and I was participating!

I seriously considering yanking him out of there and running. But I'm the mom now (really, how did that happen?) and I have to be strong for him. So I walked behind the wall to wait as he wailed and riled.

As soon as I could get him afterward I did. I scooped him up and calmed him down. I kissed his tears away and told him how sorry I was.

Back in the room it was time to collect urine and believe me the catheter was no picnic but he's such an amazing little trooper he made it look easy.

Finally the blood. I knew they'd want an IV and I also knew that wasn't going to happen. If I had a penny for every time a NICU nurse, and those NICU nurses can put an IV in anything, sighed with frustration about Bryce's "squiggly preemie veins," well you wouldn't be reading this because we probably wouldn't have time for blogging from our own island paradise.

The second nurse to try for a vein actually had the nerve to get mad at me because Bryce was kicking him. I'd been kicking him too if I thought I could have gotten away with it.

Three and half hours after our arrival the doctor came back and delivered the good news. The flu and RSV tests both came back negative. The urinalysis and blood tests would take a couple of days to grow anything but he doubted they would. And the CBC showed his white count was right on. So we were informed Bryce has some unknown, un-named virus and we should follow up with his pediatrician in the next 1 to 2 days.

And so we've spend the time since then quarantined to one room because Caleb has reinfected the rest of the house with his germs. Bryce has slept more than I ever thought possible but I stay firmly by his side just in case. His fever is controlled by Tylenol and although he's a little grumpy I've managed to coax a smile or two out of him too.

We'll see the pedi first thing tomorrow morning and hope that this is all behind us soon enough.

As for mom? Well, I'll make it. But not without too much worry and anxiety. I'll tame it with a little Zoloft, a little counseling and a lot of faith.

Tuesday, February 2

Virus but not flu or RSV. On our way home to follow up with pediatrician tomorrow.


In the ER with Bryce. 102 fever and a cough. Last place we want to be. Your prayers are greatly appreciated.
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