Another Day on the Oscillator

Yesterday we received news that Hunter would today be finally be getting off of the oscillator. I guess at some point in the middle of the night Hunter changed his mind. His oxygen saturation went down and they had to turn the settings on the oscillator way up. Now the machine is turned up higher than I ever remember it being and there is no longer a plan for removing the oscillator.

To get an idea of how much he changed overnight, the oxygen on his machine has been set around 30% since they put him on it. Regular air we breathe is 21% oxygen so he hasn't been much higher than that. When we left last night he was down to 25% and it was looking very promising that he'd be off that machine today. When we came in this morning they had turned it all the way up to 60% - SIXTY PERCENT!

By the time we left this evening they had been able to turn it down to 50%. Hopefully he's recovering from this setback well.

Mommy is very happy because last night she was able to do some "Mommy things" with Hunter. His nurse was getting ready to do her baby maintenance and asked Mommy if she wanted to help. She was able to change a poopy diaper, take his temperature, and feed him. He didn't enjoy it one bit though, he was making his screaming face the whole time. I wish I could have heard his scream, but with the tube down his throat he can't make any noise.

Vena Cava

Last night Mommy and I went to visit Hunter to wish him a good night. As we were sitting by his bed the Doctor came to talk to us. His doctor will normally come visit us once a day so I was a little surprised by this as we had already played Quiz Show with him earlier in the day. I figured that he just wanted to visit us since we're such good friends now.

Three things I know about Hunter's Doctor:
1. He uses many big words.
2. He likes to play pool and has a brand new 9-foot table.
3. He does not want me to punch him in the face.

See, we're pretty good friends. I was wrong though, he didn't just come to hang out. He had the results from Hunter's echo cardiogram. This echo was done because they wanted to do a second check for a certain heart defect (Patent Ductus Arteriosus) which Hunter already had one negative echo for. The good news was that this echo was also negative for PDA, but the cardiologist did find something fishy.

I don't know a lot about the heart but it sounded like his Left Superior Vena Cava, which pumps all of the old used blood from the top third of your body into your heart, is going to the wrong place. It still gets to where it needs to go in a roundabout way, but the doctor was still concerned about it. He said that we should wait to hear from the cardiologist so that's what we did.

Today we went back to visit and met with a different doctor. He had spoken with the cardiologist earlier in the day and was told that this condition is actually quite common. Nearly 3% of people have this and they go on to live a normal life without any treatment. He didn't suggest any follow up, which was a major relief to us. The doctor said he would discuss this with another cardiologist to get a second opinion, but so far it sounds like Hunter will be able to continue to get better without having to worry about this.

Also, I found the answer to a question that's been asked several times.
Yes, he does poop. No, I haven't seen it.

Dr. Me

Fortunately today is a boring day for Hunter. He is getting better, the pneumonia is clearing up and they are continuing to wean him off of the oscillator.

Dr. Big Words came to talk to us today and was very excited to show us Hunter's new X-Rays. He told us to follow him because he had some "very good news." Remember the "very good news" part, it's important later on.

Mommy and I followed Dr. Big Words into the physician hideout, where they're usually watching Sports Center on a big flat-screen TV, and of course working on doctor stuff...

He pulled up Hunter's latest X-Rays and asked us, "What do you think?"

This was followed by an awkward silence where I guess he wanted us to diagnose our own son. I've seen a few of his X-Rays before so I could point out his lungs and his heart, but that is the extent of my ability to read X-Rays. Mommy points out that the lungs are shaped better, so I agree, "Oh yeah, that looks good."

Dr. Big Words looked at us as in a way that I knew exactly what he was thinking - "BUZZ! Wrong answer, try again."

He must have realized how helpless we were so he switched it to a multiple choice question, "Compared to yesterday, do these look worse, the same, or better?"

Ah ha! I can do multiple choice. This is where that comment from earlier comes in, "very good news." Based on that we answer "Better?"

DING DING - We Won!

And the prize was being able to see that Hunter is fighting off his infection. I need to study up on my X-Ray reading so the next time he shows us I'll be able to play along.

Give and Take

Hunter is still fighting his infection. It sounds like he's doing a pretty good job of it too. He is still looking good and pink, his breathing is still doing well. It sounds like his CO2 is still fluctuating, but the doctors say that's to be expected and they'll keep treating him to help this.

There is a new problem that has reared it's ugly head. I don't remember if I wrote about this before, but when a baby is on artificial respiration for too long it can damage the lungs. It can be caused by the tube going down the babies throat, the unnaturally high amount of oxygen being pumped into his lungs, and the high pressures being exerted on his tiny lungs. Unfortunately all three of these things are necessary to keep him breathing and alive. We're in a situation where we have to do something that will likely end up hurting Hunter to some degree in order to increase the chances that he is able to stay with us.

Today Hunter's doctor said that the first signs of this damage were beginning to show on the X-Rays. This lung damage leads to Bronchopulmonary Dysplasia (BPD) which his doctor says we will be hearing a lot more about in the weeks to come. It is caused by scarring on the lungs, fortunately little babies lungs regenerate quickly and many of the effects of BPD disappear within the first year.

I'm betting he's going to be spending quite a bit more time on the ventilators. We're hoping we can keep any damage to a minimum and Hunter will be able to overcome this whole thing.

Pneumonia

We found out today that Hunter has pneumonia. It sounds a lot scarier than it is. He has some wonderful doctors and they are not surprised or intimidated by this.

He's been responding well to the antibiotics and is a completely different boy today than he was yesterday. If you look carefully you can see his little pink toes in the picture. His nurse says it is a good sign that he has healthy blood again.

I talked to Hunter's nurse earlier today and she kept referring to his "worst night" two nights ago. I find that the nurses use terms like that a lot, or "bad night" or "up and down" without really explaining what it means. I asked what made it his "worst night" and found out that at some points his blood gas tests showed results that could have been fatal had they not reversed. They have a much nicer way of explaining it though, usually involving many numbers and big words. She reassured me that little babies are very resilient, and it sounds as though they can handle a lot of conditions that adults would not be able to.

They're not going to push any changes on him for a while. Baby Hunter is going to get some time to rest and get over this infection. Because of this, they're going to leave him on the oscillator for a few days. They will continue to feed him milk, 2 ml every 4 hours. Hopefully after this is behind us we will have many boring days until he comes home.

So Much Going On

There has been so much going on today and my thoughts are somewhat scattered, but I'll give it my best.

The blood culture showed bacteria in Hunter's blood which means he has some sort of an infection. His doctor last night said it could take up to 48 hours for results to show, his started to show within two hours. They are still unable to tell what kind of infection it is and that will take closer to the full 48 hours to diagnose. In the meantime the antibiotics he is on seem to be working and he is getting better. Hunter's nurse told me that it seemed that he was trying to tell everyone that he was sick and it just took a while for everyone to listen.

They did the echo cardiogram today to do a second check of his heart. Although the cardiologist hasn't looked at it yet the technician who did the test (and is supposedly very good) said that she didn't see anything wrong. Hunter aced that test again!

Hunter's blood pressure is better, too. They had put him on dopamine to help, he was on a low dosage this morning, but he's gotten to the point where he doesn't need it any more. His nurse keeps some right at his bedside though just in case.

I've taken a picture every day of his life except for today. When I went to visit he had a blanket covering his face and the oscillator was making his little chest bounce up and down. It is an image that I would rather not remember.

I can't speak for Mommy, but I never thought that this would be as emotionally difficult as it has been over this short time. Everyone who has been through this has said that and the doctors and nurses warned us too. I guess I thought I could handle it, but this is turning out to be the biggest challenge that we have ever had to face. I'm very thankful for all the support we've had from everyone, it has helped tremendously.

Rocky Road

Mommy and I packed up the kids and headed down to the hospital to visit baby Hunter earlier this evening. There wasn't much going on at the time, he was hooked up to the big scary machine still. His nurse said that other than being switched back to the oscillator today had been a good day for him.

Later in the evening we received a call from Hunter's night time doctor. She has planned a lot of work for Hunter over the next 24 hours. Just like so much of what has been going on lately, I don't know how to react to it.

It sounds like they are starting to take a much more aggressive approach towards getting Hunter healthy. They have to fight his low blood pressure, poor breathing, and high CO2. As far as I know he is still scheduled for two X-Rays a day. Now he is getting another echo cardiogram to check his ductus again (see PDA several days ago). He is getting a blood transfusion, I don't remember exactly why. He is also getting a blood culture that will show if he has bacteria in his blood. This can take up to 48 hours to show anything so they are starting him on broad-spectrum antibiotics.

It sounds like they've dropped the "wait and see" approach that they've been working on the past few days. It's scary that that technique didn't help, but it's also a relief to see pressure for some results.

Back on the Oscillator

Happy Hunter's First Christmas.

Hunter is having a hard day on his first Christmas. Hunter's doctors give us an update once a day, either personally if we're in the NICU or by phone if we're not. Today we are running behind schedule and they must have thought we weren't going to make it in so his doctor called with the update today.

Hunter is not having a happy first Christmas. Overnight they measured the gases in his blood and found that the CO2 is too high. I don't understand how this happens, what the consequences are, or what causes it. I guess it's good that I'm not his doctor :)

Because of his high CO2 they had to move him backwards onto a more dependent breathing machine, the very intimidating oscillator. This machine looks like something you would find in Dr. Frankenstein's lab and it makes his little chest flitter as it pumps air in and out very fast. Dr. Big Words says that it's very likely that this is being caused by a case of pneumonia, which we already knew was very possible but were hoping would not happen. He's scheduled to receive an X-Ray shortly to diagnose it, and will continue to receive X-Rays every 12 hours until he's better. In the mean time they're going to be giving him antibiotics for likely the next seven days to fight any lung infections.

Good news, they're still feeding him milk.

Merry Christmas

Boring is Good

Today Hunter's brother and sister came home after spending the last week three hours away. We did find out from Hunter's nurse the other day that they may be able to come in and see him once, even though they are both under the age limit. I think they would both like to see him but I'm still not sure that they understand the whole situation. Heck, even I have trouble grasping how big it is. I'm glad that they're home now and we'll be able to spend Christmas together tomorrow morning.

Hunter will spend Christmas in the hospital, but we will be going down there to visit him and wish him a Merry Christmas. His doctor didn't have too much to say today, they're continuing to wean him from the ventilator and every day he is less dependent on it. They are also planning on increasing the amount of milk he is given in a few days. Since he is out of his first week where all of the excitement happens we're hoping that the next few months will be full of boring days where he will be able to rest and grow.

A Step Ahead

Happy One Week Birthday Hunter!

Nothing but good news today (hooray!). Hunter is doing well and is rebounding from the issues he was having several days ago. He has gained some weight, he's up to 2 lbs 12 oz, which is a gain of a whopping 4 oz from his birth weight. Hunter's nurse reminded us though that preemie weight can change daily so there are no worries if it is lower tomorrow.

Hunter is breathing better today than he was yesterday, they were able to turn down the settings on his ventilator to allow his lungs to get more exercise. Now he is consistently initiating breaths which is something he wasn't do at all two days ago.

Since Hunter has passed his first week with us here he has overcome one of the most difficult times a preemie has. The day he was born one of his doctors said babies his age typically have a 60-70% survival rate. After his seven days they are upgrading it to 85-90%. After the first week the main concerns are secondary problems, such as if he were to get an infection. This is big news for us and him.

Happy Birthday Hunter!

One Day at a Time

Hunter got his echo cardiogram last night. The test turned up negative for PDA, which means he doesn't have a defective heart and everything sealed up correctly when he was born. On the other hand, that doesn't give us an easy solution to why he stopped breathing on his own.

Either way though, he's stable now, he's moving around, and he is also initiating some of his breathing which is a big improvement over yesterday.

Dr. Uses-Big-Words says that he is doing well and sometimes preemies take a few days for their bodies to realize that they're premature and not ready to be acting as they should. I guess that makes sense, the little guy must've worn himself out trying to be a big boy.

He is very squirmy today and stretching his little arms and legs a lot. Mommy and I think we saw him crying, or at least trying to. He scrunched his face up in a very fussy manner and tried his best but couldn't get a cry out through that darn tube.

More good news. Right about now they should be feeding him milk again so hopefully we'll soon be able to put this first little speed bump behind us. I'm sure there will be many more, but he is in good hands and we have many wonderful people supporting us. Thank you.

One Step Back

Mommy and I just got home from the hospital where we were able to speak with Hunter's nurse and doctor to find out more about the call last night. Hunter's doctor likes to use real big words and even when he simplifies it for us regular folks he still has a tendency to use big words. That's how I know he's a good doctor :)

It turns out that my sleepy memory of that call was pretty accurate, the tube he had in his mouth was leaking and causing his heart rate to fluctuate so they tried to remove him from the ventilator and put him on CPAP (Constant Positive Airway Pressure) which is the next step after the ventilator. He wasn't ready for it and it sounds like I'm glad I wasn't there when this happened. They had to put him back on the ventilator and we expect he'll have it until some time next week.

Hunter's nurse said there are several things that can cause this, but most have already been ruled out. He doesn't have pneumonia or an infection (good news) and most likely has Patent Ductus Arteriosus (heart murmur, not bad news). PDA is common in preemies and is easily treatable with either medication or a simple surgery. They've scheduled an echo cardiogram for later today to verify this is the cause.

I can't say today's been a good day for him so far. Because of this Hunter is no longer breathing on his own and is currently completely dependent on the ventilator. Also, he is off milk and back on IV food to protect him from intestinal infections. We're going back later tonight and hopefully they'll have done the echo by then and we'll know what's happening next.

Overnight Phone Call

Mommy and I got a phone call at about 3 this morning from Hunter's doctor. Seeing the hospital name on the caller ID was certainly scary enough to wake us right up.

Overnight they attempted to remove Hunter from his ventilator because it was leaking (I'll get more information when we go to visit later today). He wasn't able to support himself and was "crashing" (I'll get more information on what that means, too). They had to put him back on the vent with a larger tube. I'm not sure what the consequences of this will be, but I'll be sure to ask and keep everyone updated.

Not Much New

There's not a lot of news for today. They did remove the tummy tube last night so Hunter looks a lot better since that cleared away a lot of tubes.

He is still on the ventilator and his doctor says that his breathing has not been improving since yesterday so he thinks Hunter will be on the machine for a little bit longer. They want to get him off as soon as it's feasible because having a tube into your lungs is unnatural and can lead to other problems.

In the picture it looks like there's a spotlight shining on him, that's just a lamp that has been placed above his box to help clear up Jaundice. They say that should only be on for a few days and that it's not a big deal since nearly every preemie has to have it.

Also in the picture you can see Mommy's finger in little Hunter's hand, he sure looks a lot smaller when you see how well Mommy's fingertip fills his entire hand.

Mommy Comes Home

Mommy came home today. That was exciting but it was also very hard to leave without Hunter. Alyssa and Gavin are both nearly three hours away with Grandma. So we went to the hospital with three kids and left with none.

On a happier note, Hunter is making further progress. They are still talking about removing him from the ventilator, but want to make sure that he is ready. I agree of course, he's going to be in there long enough so there's no need to rush. He is getting one tube removed today, one that goes right into his belly. The tube was used for drawing blood when they needed to do blood tests, but now that they aren't doing as many tests they're going to do it the old fashioned way, by pricking his little feet.

An Introduction

Baby Hunter Austin Wilkes was born two days ago on December 16, 2007. Mommy was only 27 weeks along when Hunter decided that it was time to join us.

As soon as he was out of Mommy's tummy he was rushed off to the Neonatal Intensive Care Unit and has been resting peacefully in his nice warm baby oven.

So much has changed in the past two days. When Hunter was first brought to the NICU he was hooked up to an oscillator which would do all of his breathing for him and keep his lungs inflated to reduce the chance of his lungs collapsing. After almost 24 hours he was removed from this machine and put on a standard ventilator, which requires Hunter to do the breathing but is there to help him when necessary. After spending nearly 24 hours on the ventilator he is doing so well on his own that they are planning on removing the ventilator and letting him breathe all on his own. I'm so proud of him.