8/31/2010

Denied...and so we start over

We showed up at Boys Town Hospital at 5:30 Monday morning with Parker. He was supposed to get ear tubes, adnoids removed and the ENT and pulmonologist were both going to do scopes.We did all the normal check in stuff - weight, meds he's on, etc. We did both his breathing treatments. They even gave him the cocktail of meds to start relaxing him. It didn't take long before he was asleep on Chris' chest and Chris was watching Handy Manny.

The anesthesiologist came in to talk to us. She had gotten all his records from UNMC and reviewed them from his fundoplication and g-button and was pretty familiar with his history. After doing a listen to his chest for quite a while, she told us that he sounded pretty course and she had a real concern for going ahead. She was going to talk to the doctor when he arrived.

When Dr. Lusk came in, he looked worried. He did his own assessment and listened to his lungs. He said "you just get a gut feeling about these things and I don't want to do this today." He's been doing this 30 years so I guessed we should listen to his instinct. He was concerned with Parker having spasms of his airway because of the breathing tube they would use and possibly have trouble breathing normally after surgery. (If they would have gone ahead and told me that he needed to be admitted or was back on a vent, they would have had to admit me).

So we were sent home. No surgery. We were given another antibiotic to try to help clear things up. We go back and see the ENT on Friday and see where we stand. We are also to keeping doing one breathing treatment every 4 hours until then and the other one twice a day until then.

Hopefully by the end of the week we'll have a new date planned. Time for the little guy to get feeling better. It's been a long, not-so-fun summer. Darn you preemie, on-a-vent-for-7-weeks, chronic lung disease, bronchiopulmonary dysplagia lungs.

8/23/2010

What we've been up to

Waiting for surgery, baby babble and play dates

Parker is miserable. And he's taking us with him. He is constantly coughing and gagging on all the snot he has. He turns purple all the time and all we can do is hold him and rub his back, and maybe see if he somehow manages to cough anything into his mouth and help get it out. It's awful. We are doing breathing treatments and steroids all the time. I will be so happy next week when he can have his surgery and hopefully start feeling better. Feeling like this for so long is affecting a lot of other areas for him. Hopefully things are about to change around for him.

Payton had to go to the doctor last week. I was concerned about a cough she was having. The doctor decided not to do xrays this time, but we had to do a little work to get her O2 sats up to where they are acceptable. So another antibiotic and more breathing treatments for her. If this keeps up, she'll be going to the ENT soon.

Payton has started to babble a little more. We call Parker 'Bubba' alot and it sounds like that is what she is saying. Too cute!

Last Sunday we went to Sarah's house and had a play date with Austin and Christian. They did so good. And Payton loves trucks! Saturday, we walked to Bayliss Park and met Emelie and Asa for a playdate. Emelie loved chewing on Asa's truck and sitting with Emelie, Parker puttin ghis feet in the water and Asa had a great time playing in the splash fountain. We will definately be doing that again soon.

8/18/2010

A special prayer...

For Benjamin...

Born at 26 weeks

Special prayers during this time to your family

Rest well little one


8/17/2010

We're starting to countdown

Not that we're not going to do anything until then. We have a full calendar until then, but...

The countdown is on until we turn 1!

And we're going to party! BIG TIME!

So, get ready...you'll be amazed at how big we are by then. and what we can do. Not to mention how far we've come :)

Details coming soon! :)

Love, Payton and Parker

8/13/2010

Notes from our week

We had an appointment with the early access clinic this week. They are doing great. They even gave a few ideas to possibly help Payton stop this whole "I turn into another baby at 6 pm" thing. Stay tuned.

Parker started working on some teething biscuits this week. He caught on right away and loves to suck on them. YEA!

We had a visit from Victoria and Dan on Wednesday after "school". They had a great time. And apparently Victoria telling Parker "ham" makes him break out in to the giggles.

The babies have a new ride and we're hoping it is cooler sometime this weekend so that we can give it a try.

Parker has his surgery scheduled for the 30th. Hopefully, even though he's been a happy little guy, it will help make him overall more comfy and less snotty. I'm sure he'll do fine. I'm not so sure about mom and dad though.

It's been a long, hot week. The kiddos have each had 4 hours of therapy and a 2 hour doctor appointment this week. We're all a little tired. Here's hoping we can get in a walk and maybe a few naps this weekend. :)

8/12/2010

A public health announcement

I know, it's still just August. Kids are just barely getting back to school. But here is your public service announcement -

Start planning now to get your flu shots!

They are including the H1N1 in with the normal flu shot so it's just one poke. I promise you won't grow a tail and snout if you get it.

Plan on being healthy this fall/winter. Start planning out your contact for getting the shot. Watch for public clinics that will do it for free alot of times. Just do it!


This public health announcement has been brought to you by Payton and Parker - who after their birthday will be going back into hibernation through the flu season.

8/09/2010

One more...

This is from a friend. Kind of explains the whole thing. (I'll keep these to a minimum but it was too good not to share).

When they are born, no one offers congratulations. No one calls. No one knows quite what to say. It's as if there was a death in the family, the death of someone they all knew about but hadn't seen in a number of years. A few days later, after the critical time of knowing whether the child would live or die had passed, the calls come. Still no congratulations. Instead, they are "status" calls. "How is he doing?" "What do the doctors say?" They listen but I'm not sure they understand.


Because you are now the mother of a premature baby. Your child has been in the NICU for such a short time, but you already speak the language. Your dialogue is peppered with terms like bradys, desats, bili levels, IVHs, and Hyper L. The nurses have taught you well because you now understand the terms, roughly what they mean and the general impact of these terms on your child's condition. You know how to touch your child, how long to scrub for, and where to find the tissues. You have been introduced to the pumping room, the protocol involved with the collection of your milk, and how to treat all your equipment. You are fragrance free for your preemie, going so far as to wash clothes in baby detergent and rinse with vinegar. And you now awake every three hours and think of your little one as you hook up the horns for the routine pumping session.
You have changed. You have somehow left being a normal person and are now an "other". And you stand in your "otherness" with solidarity. After all, your preemie is an "other" too. And all those other parents and preemies in the NICU, all "others" in their own lives, are just like you. You belong.

You didn't want to belong. If there was some way to get out of this, some bargain to make with God, you tried it. You pled with the doctors to just postpone matters until tomorrow, because every little day counted. You listened to the preemie statistics as presented by the neonatologist and you still wanted, believed, your child would succeed at graduating from the NICU earlier than they predicted. Someone else's child will be there that long, your's will come home next week.
And then reality sets in. Nurses and doctors alike keep iterating the same tired lines. "Look for him to come home around his due date." "One step forward, two steps backward." "It's a preemie thing." Some were callous, careless with words. They hurt. Others propped you up when you felt like you couldn't take it. They hugged, they handed over tissues as you cried, happy or sad. One made you feel golden when it was the day to start Kangarooing your little one. She carefully, tenderly placed your itsy bitsy child in your trembling arms, patted you on the back as you asked "Am I doing this right?" and guided you in your first holding session. She took your picture together, the first Mommy and baby picture. But you were still there.
Weeks passed. You were in a routine. You knew the ins and outs of the place, the nurses you liked and the nurses who treated your child well (and you knew already that those categories were not necessarily filled by the same people), and when that nice doctor would be back in. You knew to disdain the residents since they were not there for the babies (it's just a stop in their rotation). You knew the best times to find an open pump, when the cafeteria closed, and exactly how many CCs your child needed each feeding. You made midnight calls. Two a.m. calls. Four a.m. calls.

People began to treat you differently, like you didn't have a child. Your friend's careless comment that at least you didn't have stretch marks stung. Your colleagues forgot your baby shower. You went back to work and tried not to think about your baby, laying there in an isolette, isolated and alone. You hurt for him to have someone else hug him when you couldn't be there. And still, time marched on.

In the beginning, the strides were huge. Your child made amazing leaps. As time went on, the milestones were fewer and farther between. They were no longer big elements, now they were finely tuned aspects, like weaning down the vapotherm or having no aspirates.

While the nurses and doctors counted days of life, you counted in weeks. It was more manageable that way. You ignored the omnipresent due date and tried to reassure yourself he would come home earlier than that.
And at some point, you became a regular. People were tired of you. You were tired of them. All you wanted was your baby, then. You felt like they were keeping him hostage. You just wanted to take him home so you could be together, alone, with no one else hugging him but you, no one judging your parenting skills, no one eavesdropping on your whispered conversations with your child.
But he stayed. A hiccup arrived, an itsy bitsy little thing in this vast continuum. You inquired about it but were rebuffed. You inquired again, and got rebuffed again. It became more important because no one could answer the question, no matter who you asked. And this itsy bitsy grew into your mountain. It was a developmental thing compounded with a real medical concern compounded with medical nonchalance. And your child who had sailed through the NICU was suddenly still there, still attached to monitors, a newborn in size and age but not developing the skills to be able to leave. And he was unable to develop the skills because the situation and protocols would not allow him to do so. At some point, your tiny voice became a loud, raving Mother -- and you fought for your child. Was it the right thing to do? Who knows? -- but you do, you know. Of course it was your job to fight for him, to call the doctor on the carpet for not noticing this issue. It didn't make any friends, but you fought for him. And through all the problem solving, a solution was found. It wasn't the complete understanding of where your preemie was medically (that would come later with a specialist, a specialist who was never consulted regarding your child while in the NICU, even though it would have been an easy phone call to make), but it was enough to allow him to come home.

And he did. In a rush. One days' notice. He came home on a wing and a prayer, during a fortuitous good spell regarding his medical issue. Finally, long past his due date, he was finally home. He was held by Mom, Grandma and Grandpa, Aunt, Uncle, and Cousin. He saw his house, heard his cats, slept while Grandpa drilled and hammered. He snuggled with Grandma watching Seinfeld. He felt cat whiskers and knew his friends. He was home, where Mommy had wanted him ever so long.

And you began the next chapter, life after the NICU with your preemie. Welcome to the "other" world, Mommy.

Parker's good Sunday afternoon