14th Posting: A Talk with the Doctor

Chris had a great talk with the neonatologist.  She was very up front with him on a lot of things and gave us an idea of where we are and where we're headed.

She is ecstatic about Luke.  Dr. Katie told Chris every day when she sees our baby, she is amazed at how well he is doing.  This doctor has been working for over 25 years and out of all the babies she's dealt with in similar situations, Luke is making the best progress.  Dr. Katie also mentioned he'll probably be on the oscillating ventilator for another month.  I can't tell you how much it meant to have some type of time frame.  To us, it seems like Luke has been in the same spot for so long.  Was this expected?  What was okay?  We had no clue and now we do!

Chris also discussed Luke's "blue" episodes.  The doctor says it's because of the secretions Luke's been having due to the ventilator tube.  He's had an infection in his throat for a couple of weeks now but things are getting better and starting to loosen up.  Because of  this, the secretions are blocking his tube and his oxygen.  The doctor also reminded Chris this is one of the reasons why Luke is still in the hospital.

I'm so glad Chris had this talk.  We both feel a little more grounded now.

On another note, Luke had his first bath.  All that preemie fur that was on him washed away and his skin looks so soft.  He also weighs about four pounds.  I love seeing his face chub out a bit.  He's looking cuter all the time.

For my recovery, things are getting better.  I can move around at a steady pace for most of the day even though it's still a lot slower than it used to be.  My incision doesn't hurt, but it feels numb.  Weird but normal.  The only pain I've been having is in my legs as they are shocked into doing things they haven't done in months!  My days of being treated like a princess are over.  Yesterday I was doing laundry, ironing, and helping the kids get ready for Thanksgiving at the in-laws.  I mentioned how tired I was and the response was, "Why?"  Yup, definitely getting back to normal, but...that's okay.

13th Posting: And Down We Go....

It's Thanksgiving today.  We're having my family come over.  I am thankful for so many things this year, but at the moment, things are difficult.

Luke has started having these episodes.  He'll be fine, just chillin' out, and then his oxygen level will plummet and he turns a shade of blue.   At that time, the nurses turn up the amount of oxygen that's being given to him.  They suction out his breathing tube incase there's anything blocking it.  So far, he's managed to bring his levels back up, but he's had about four of these episodes since 10:00 last night.  It's now 9:00am. 

The doctors just weaned him off some of the Nitric oxide this week so maybe this is his way of reacting to it.  All the headway we've made on the ventilator is being taken away.  His levels are the same as they were a week ago.

Tomorrow Luke will be a month old.  I still don't know if he's going to make it or not.  I wish there was more of a clear cut path but there just isn't.

Now, I must pretend to be in a decent mood for my kids who are home with me.  They're so excited for this day.  Right now, they're the only reason I have to keep going.  To say this is difficult is an understatement.  I know God doesn't give you what you can't handle, but we're truly stretching the limits here.

12 Posting: Keep it Going Luke!

Wow!  In a week we went from bad, to mediocre, to great!  A good part of me doesn't want to get too excited about what's been happening.  Maybe it's a superstitious part that doesn't want to "jinx" it.  Still, I can't hold back the hope that is welling up inside.  I guess we'll take it as long as Luke is willing to give it!

Luke's oxygen levels went from the mid-thirties, upper forties to mid to low TWENTIES.  If you recall, room oxygen is 21%.  That is definitely where we want to be!  His amplitude has also been reduced to 30% where just a couple of days ago it was 34%.  Once he gets down to 20% on the amplitude he'll be extubated.  The ventilator will be removed and we'll be able to hear him cry.  His frequency setting is now 15% on the oscillator which is the best reading you can get for this.  I know, most of this sounds like a bunch of mumbo jumbo, but for those going through the NICU process, it makes sense.  I'll translate for the rest of you.  Luke is on his way!

Because he's doing so well, the doctor has now recommended that Luke be held once a day.  Yes, you read right, we get to hold him!!!  Chris did the honors on Saturday.  Luke was just a day over three weeks old.  Gestationally, his age was 31 weeks and 2 days.  It was so cute watching Luke snuggle up to Chris.  He actually did something called "kangaroo care".  That's when the baby is put on the parent's chest, skin on skin.  Studies have shown this type of interaction helps the baby developmentally.  Who'd have thought the sense of touch could be so powerful!  I'll get my first time with him on Monday, tomorrow.  As much as I would have liked to be the first to hold my boy, Chris really has a special place in his heart for the little babies.  When our girls were younger, he was the one who'd sit with them for hours.  I, in turn, enjoy when the kids get a little bigger and can interact more.  We're a perfect pair.  So anyway, I knew he should be the one to do the honors.  If you could have seen the look on Chris' face, you would have agreed.

Every so often, a memory overwhelms me of that day so long ago when we sat in the emergency room being told our baby had no chance of survival.  To think if we would have listened to the advice of termination we wouldn't have this little gift.  Absolutely amazing.  I still can't say I know what the outcome will be, but no matter what, I'll always be thankful that I know my little man and cherish what a fighter he is.

As for my recovery, I'm getting there.  The incision doesn't really hurt anymore. I still get incredibly tired but that's slowly improving.  Last week when I went to church, it was a struggle to get through the hour.  This week, it didn't feel bad at all.  I've also been having some issues with guilt.  All these responsibilities I feel obligated to do, but my body says, "not yet!".  When I left the hospital, I was told to take it easy.  You know, I really don't know how.  I wish they would have given more concrete directions.  Since I have no gauge, I go, go, go until my legs won't move anymore.  I know that's probably not what the doctor was thinking, but really, I don't know how else to do it.  It's either all or nothing babe.  I will be very happy when my energy level is back AND I lose this 30 pounds of baby weight.  Having absolutely nothing to wear doesn't help my mental state either!

11th Posting: Doing Okay

I decided I need to try and post on here a little more than I have been.  Going through this NICU adventure, I'm now craving stories of babies going through similar experiences.  They are hard to find.  I'm hoping Luke's story can help some family out there.  People say knowledge is power, but more so than that, it's peace of mind.

Since Saturday, Luke's numbers have been fair.  They're still not as good as we'd like them to be, but being stable is much better than what we were dealing with before.

He is still on the oscillating ventilator.  This machine actually shakes Luke's little lungs about 100 times a minute.  The lungs are gently and quickly being squeezed and actually do the breathing.  Luke should not be doing any breathing on his own.  The machine does all the work for him.  With the shaking action, the lungs are also ever so gently expanded.  Since lungs are so fragile, the gentler the better.  His settings have pretty much been the same for about five days or so.  The frequency is set around 10%.  The amplitude is around 34-35%.  Yesterday when I saw him, I was thrilled when I noticed some of the settings were slightly turned down; however, when I went in today, they were back up.  Not what I wanted to see, but it could be worse.

His lungs looked a little "milky" on today's x-ray. That means there was some fluid evident.  Because of this, Luke will be getting treated with caffeine (or what the nurses call Mountain Dew), and Lasik (lasix?? lasick?? who knows...).  These drugs will most likely take that fluid from the lungs and Luke will pee it out.  It's not the first time he's had this treatment and it has worked in the past.

He has a slight infection in his breathing tube because of the constant vibration of the oscillating ventilator.  This makes secretions that have to be sucked out  every several hours or so.  Of course Luke is taking antibiotics for this and is on a nebulizor.

So much medicine for this little boy.  He's also taking morphine to help keep him calm.  There's also vitamins and iron, as well as protein being added to his formula feedings so he starts putting on some good weight.  That's a lot of stuff going in him.  When I saw him today, he was very fidgety and uncomfortable.  I'm sure he has to have a tummy ache.  Tomorrow there will be x-rays of his stomach to check things out.  I sure hope he can get more comfortable.  I didn't like seeing him like that.

Good news is, Luke is up to full feedings every three hours.  He also had an IV in his arm removed and a pic line from his belly button.  It's nice seeing him without so many "lines" coming out of him.  Big goal is that ventilator.  Once that's gone, we'll be able to hear him cry.  Imagine, WANTING to hear a baby cry!

Luke is 19 days old today.

10th Posting: After the Scare...some pictures

Here's Little Luke on the Sunday after our big scare.  He's 16 days old.

While the nurses are changing the bedding, Chris gets to hold Luke up.  Chris really enjoys this.  He says Luke just meshes right into his hands.

Luke holding Chris' hand.

The girls having a pajama party with Luke.  Because of the flu season, they won't be able to see him again until he comes home.

9th Posting: The Biggest Scare Yet

Saturday was the day of my last post.  It wasn't even an hour I had written it when Chris called me very upset.  He had gone to see Luke.  Things did not look good.  Everything that we called stable was not.  His oxygen went from the twenties to the seventies and kept rising steadily.  His CO2 levels were following suite.  Everything that you could imagine was no where near where it was only 24 hours prior.  His color looked bad.  The doctor pulled Chris aside and explained to him this could be the beginning of the end.  Luke's body was possibly growing too quickly for his lungs to keep up.  After Chris explained this to me, the girls and I rushed to the hospital.  I was so confused and scared.  How could a baby doing relatively well fall this fast?

We watched him for a long time that day.  The girls came to speak with him and touched him, thinking this may be the last time they'd see him.  We all prayed around him.  Hours went by.  The girls were being so good.  They'd go spend time in the family room the NICU has set up so Chris and I could keep watch.  Never a complaint out of any of them.  Such good girls we have.

Thankfully, Luke's numbers slowly, slowly, slowly started coming down.  His color began to return.  The family left.  Chris' brother Mark offered to watch the girls for a little while so we could go back up to be with Luke.  That's exactly what we did.  By the time 8:00pm came, things had improved.  It was a big scare for us and another reality check of what we're dealing with here.  We have a preemie, which in itself is a challenge, but on top of that, we've got a preemie with underdeveloped lungs.  Many people have told us stories of babies being born weighing a pound or so and growing up great.  That is definitely an accomplishment.  Every situation is different though.  Being born is a huge milestone.  Dealing with the complications is another.

Still keeping our fingers crossed....

8th Posting: 15 days in the NICU

Our miracle boy is now two weeks old.  On one hand, it feels like a lifetime since he entered our lives.  On the other, it feels like yesterday.

Luke is...stable, for lack of a better word.  He is definitely living the "two steps forward, one step back" theme of the NICU.  The doctor says his lungs are looking good.  One day this week, his ventilator tube wasn't placed in the proper spot so his left lung had a subtle collapse, but as soon as the tube was fixed, things looked much better.  He also received his first blood transfusion.  There was an ultrasound of his head to recheck for any brain bleeds or abnormalities.  Passed that.  The one test we're waiting on now is an ECG to see if that PDA valve has closed.  I tell you, this boy has taken more tests than a college student and he's got a long way to go!

Gestationally, Luke is 30 weeks.  That means, he'd still be in my tummy if this was a normal  pregnancy.  The problem is, I have a hard time remembering that.  How I'd love to have him home with me.  Going through a pregnancy and having no baby home with you is weird.  Everything around you is demanding attention but you have these battle wounds saying otherwise.  When your baby is with you, that's a great reason to sit and let yourself mend.  You're focusing on this child that wants to be cuddled and in the meantime, your body is healing.  With this situation, my mind is saying I'm supposed to be going at the same rate I was last year.  There is nothing to justify me sitting without producing guilt, so I push my limits.  I keep thinking, "How long before 'take it easy' turns into 'you're being lazy'."  I have no clue.

Bed rest wasn't easy.  I was stripped of what I thought being a wife and a mother was all about.  I went from being a multi-tasker to a highly focused incubator.  Crazily, I find myself missing that simplicity of bed rest.  I knew what I had to do and I did it.  Don't get me wrong.  I'm very happy to be able to move at will again, BUT, I'm having a hard time adapting to the endless list of tasks hurled at me.  I was hoping I'd be able to slow life down once I got home.  I wish I knew how.