Our little boy

Our little boy
Our Little Miracle

Thursday, September 30, 2010

A Good Day.........

Had by most!

While I lay in bed Julie and her Mom went down and had a great day with the little man. Julie got to hold him for about an hour and a half and she said that he was doing very well.

He was still on the C-pac (matter of fact, we have learned that the actual term they have been using all along is "C-pap, but we are going to continue to call it C-pac until we faction off and call it C-pac red and C-pac black, that one is for Matt again)

At any rate, he had fewer "episodes" than the last few days and seemed to be in better spirits.

She took some videos, one of which is conveniently located here;

video

I am going to drug up and fall asleep soon so I will leave you all for the evening.

No progression on the name front yet but we have all of your offerings on a list and are working through it all.

Thank you all so very much!

Sick and tired

A quick post. No rant or rave. The title is exactly my health at the moment.

I woke up with a head cold and am not able to go see the little man. They have strict rules about bringing infection into the NICU. By strict I mean you CAN'T go to the NICU with a cold.

So here I sit, watching Ryder Cup prelim stuff and feeling awful.

Our phone call to the hospital this morning gave us the same info as last night. Nothing new, but he has had a restful night. Julie is down there right now with Grandma so I will have more updates later.

Take care and God Bless you all!

Wednesday, September 29, 2010

C-paks back....................alright?

That will, most likely, be the most corny title I ever type.

So today was a bit of a "setback" day. He is having more and more trouble every day breathing and the number of "episodes" he is having have increased exponentially.

I left work early and headed down to see him. Julie was already there.

He was sleeping on his belly and while I was there had no episodes. We spent some time with him and then took off. We were both pretty tired.

The good news is that his "murmur" is being heard less and less so that is a good sign. They will be doing more echocardiograms to see how things are going with that dreaded blood vessel.

A recent ultrasound revealed that the bleeding on his brain has not gotten any worse, but has not gotten any better, so that is a good sign too.

In all, he is keeping on keeping on, just like his Mom and Dad. While there are some negatives, the negatives are still not being met with any massive urgency from the doctors or the nurses so we will just keep praying and let them be what they are, little hurdles.

We hope everyone is well and have a few requests for prayers. Please be praying and sending good thoughts Crystal's way for her pregnancy, also be praying for Mandy "next door" to our little boy in the hospital, she got to take one of her twins home but the other is still there.

Thank you all. Hope all is well all the way around and I will leave you with a great photo of the new roof and siding on the incubation unit:

Sorry, but I can't figure out how to rotate this photo. Trust me he is not sleeping on his head or standing up ha ha.

Tuesday, September 28, 2010

Dad takes a day off

Yep, you read it right. I took a day off today.

I went to work, burned myself right out and decided that I would come home and sleep rather than head down to the hospital.

Julie went down for a while, got to hold him and relayed the following information;

1) He looked great.
2) He had fewer "episodes" of his body forgetting to breathe today than yesterday
3) The murmur (this is what they are calling the blood vessel outside his heart that we talked about earlier) is getting harder to hear using a stethoscope. VERY AWESOME!

In all, it sounded like a great day and so I made the decision to let him lay and get some sleep myself.

I am so happy to hear that he had a great day. Thank God for the progress and I continue to pray for his health.

Thank you all for the same and as soon as we settle on a name we will let you all know!

Have a great night everyone and God bless!

Monday, September 27, 2010

Thank you all so much

The name suggestions are helping a BUNCH. While we have not selected any, we are talking about it more and more which is good.

Today was a bit of a poor day. He was real fussy all day and was not loving life too much. He was receiving a blood transfusion while we were there so maybe that was enough to set him off.

He is also having more and more "episodes" of apnea where his body just "forgets" to breathe and has to be reminded. The nurses are very gentle to rub his back or wiggle his feet to remind his body that it needs to breathe. At any rate, he has this issue daily, but today there was a marked increase in the incidents.

They are going to monitor that and see if he needs to be put back on the C-pac.

I will keep you all posted. For now, we are off to bed. We are both beat.

Here are a few photos to tide us all over for a day or so;




Sunday, September 26, 2010

Hey Yo..........meet my buddy C-Pac

Matt will get that one for sure.

Today the incubator got a remodel job. There was new siding and a brand new roof. Photo here to show you the redesign;


So with this new blanket you might be wondering what gives. Could it be that the nurses are performing a disappearing act? Maybe they are considering sawing him in half? Or it could just be that they have decided to turn off the blue light because they believe that he has had enough phototherapy for now.

Choose option C and you are 100% for today's quiz.

If that wasn't enough, "The Good Guys" (another reference that Matt may be the only one that gets) decided to take off the C-Pack and blindfold (since the phototherapy is no longer in use) and so his face is free of obstruction for all to see!


So.................there he is. For all the world to see!

Now, what is his name blogosphere? Put your names in the comments section because we are having a tough time choosing one.

So that MUST be it for today right?

WRONG!!!!!!!!!!!

A photo is worth a thousand words...................





My first time holding him was about the most amazing thing ever. Thank you Lord for this baby!

There was no real talk of blood vessels or intestine swelling or anything "negative" today. It was a day saved for smiles and for love. 

Anyway, Julie and I are so happy today it is tough to put into words. Thank you all for all that you have done and continue to do. I will leave you with a final photo and say goodnight. See you all tomorrow.

Saturday, September 25, 2010

A Dream Come True

Today started off fairly poorly. I woke up with a bit of a sore throat (The University clearly states that if you have ANY symptoms of the common cold you can NOT enter the NICU) and had to work.

I was not feeling very good about life but put one foot in front of the other and moved on (thanks Dad).

At about 7:00 pm I left work and decided to meet my Aunt and Uncle as well as my Mom and Dad and we would go down and pay the little man a visit. I scrubbed up (somewhat of a production the first time you have to do this) and went in.

What I saw pretty much dropped me. Stopped me in my tracks. Turned me inside out. Changed my life...........

The nurse was at the incubator's side with her arms inside and was massaging his face. The importance of this was evident immediately as I say my son's face for the first time!



He was amazing. His eyes were shut but you could see his interest in who was there. He was the most handsome thing I have ever seen!

We took it all in for a short while and then he was restored to his "Storm trooper" look best described by this photo:

Anyway, today was a great day in my life. Julie has had this experience already and was kind enough to save the photos from me so that I got to have my own "unmasking" moment. Thank you for that baby! I needed this day for sure!

Thank you all for your continued support.

For those that are praying for us and for him, a specific prayer request would be for the condition PDA. I will save you all the spelling of the acronym, but in a nutshell, there is a blood vessel outside his heart that has not closed yet.

Babies have this vessel open in the womb and the vessel closes upon birth. His has yet to close and so they are administering some drugs to try to help it close. This was initially diagnosed as a "hole" in his heart, but it turns out that he only has had the one very small hole that is closing.

Now if he can just get this blood vessel closed, it sounds like he will be in a much better place.

Thank you for all your blessings Lord!

Friday, September 24, 2010

Completely exhausted

Sorry everyone but this might be a short one with no photos. We are completely spent. I have gone back to work to distract my mind, and that might have been a terrible mistake ha ha. I will give it a good try, but so far it isn't feeling quite right.

Today we found out that his intestines are swelling. The doctors seemed to think that this was more important than the bleeding on the brain or even the new hole they found in his heart.

Long story short, they are still not too worried but they have scared the living snot out of Dad!

Anyway, we have to sleep. Thank you for the prayers and I promise that more will be coming soon!

Thursday, September 23, 2010

"That day"

Was today. After 4 straight days of very good progress and news, we got our first dose of reality.

The little guy has got a "Class 2 brain bleed" which means that his brain is bleeding. Everything I read says that typical class 2 bleeds mean that, while they are worse than class 1, he should see no long term ill effects.

The doctors didn't seem to worried about this so I am trying my best not to, but hearing that your son's brain is bleeding is not something that they have a manual to prepare you for. It was a hard day for his Dad.

The other issue is that he has been experiencing apnea. This is when your body just "forgets" to breathe. He typically snaps himself out of this and takes a breath, but sometimes the nurses need to remind him by flicking his feet or using their hands to stimulate him to wake up and breathe. They do not consider this too abnormal in babies like this either, so we are taking it with as many shrugs and smiles as we can.

In all, we kind of knew something like this was coming and we pray that this is the extent of the "bad news" that we get through this journey. Perhaps that "Honey moon phase" has come to an end. We hope not.

Get better buddy! Mom and Dad love you very much.

Thank you all for the prayers and kind words. Thanks Matt for correcting my spelling of poopy.

We love you all and will keep you posted!

Here's a photo to keep the trend going ha ha

Wednesday, September 22, 2010

Day 4 (another upward swing)

Day 4, or as I have come to call it, Dad's day! Today found us taking on some new challenges. While Julie got to hold him again for 45 minutes and partake of nothing new, I got to try something new.......

video
Yep, that is me changing poopie diapers. Is poopie even a word??? Matt, let me know if I am out of the English language there will ya?

Please disregard my "kid speak" and my incessant worry over whether I "did it right" what else do you expect from me?

Upon removal of the dirty diaper and placement of the clean diaper, he really let Dad know who is boss by soiling the new diaper before the fabric even hit his bum! He is a little stinker and he is only 4 days old. Trust me he will be dealt with appropriately as soon as he is able to accept any punishment I may deem fit for pooping on my hand the first time I try to change him ha ha.

My reaction was as follows.............

video
That was about the extent of the day. It was another step forward and really made leaving tougher than it was the days prior. I think that we will soon learn that as things progress, we will miss him more and more each night. I sure miss him right now. I would GLADLY change diapers right now and have him poop on my hands to have him in our arms with us.

Oh, I forgot, I have video of Mom holding him for you all here............sarcasm INTENDED ha ha.

video

Headed down in a few minutes

No major update so far today (like Lyle used to say, "no news is good news!")

I was thinking that I would provide some of my favorite photos so far so that you got some interesting views of the little man. No name so far, but we have a few we are starting to like.

Here are photos for you all. Thank you for your support everyone!

This is my favorite photo so far. I like the way it shows the conditions inside the incubator. The humidity is right around 80% in there and we wipe the condensation off the unit when we get there to get a clearer view of him. I like the way this photo conveys peace to me.

This is Mommy cuddling him while he sleeps. Her hands are so gentle that he doesn't even feel them while he dreams of having her hold him at our home. Beautiful thought and a wonderful photo.

This is me rubbing his back while he sleeps. I like the way he is sleeping as that is my sleeping pose as well. They tell us he likes being on his belly or on his left side to sleep. I like my belly or my right and Mommy likes her left side or her back. He has a little of both of us in there I guess ha ha.

I like this one because it was the first time Julie got to see him. When he came in the room he was covered by the blue blanket that you can see on the top of the incubation unit in the photo. The anticipation of having that removed was amazing and the sighs as soon as it was removed were audible by all in the room. A great moment.

I love the way this one looks. It is as if we are looking through a fog (which we are) down onto him. This was one of the first that we were able to get that was face on. The haze around him makes me think of a Hollywood movie.

This is Mommy and the Grandmothers (Grandma and Nana) on the first day Mom got to see him. I like this photo because it shows what the room he is located in looks like. It is dimly lit and the incubation units illuminate the room like Christmas lights.

I hope some of these photos give you a better idea of what is going on inside the incubator. I will check back tonight with updates and such. Prayers go out to you all from our family. Thank you all so much for your continued support.

Please know that your prayers and thoughts are helping beyond what you can possibly believe.

Tuesday, September 21, 2010

Landmark day!

I intended the title of the blog to refer to what we were seeing "Outside the Incubator" but that title took on new life late this afternoon. At about 4:00 pm we were at the U when our nurse asked if Julie would like to hold him!

The simple answer was "yes" and the following was what transpired, the first time Mom and Baby met, outside the incubator.

video

The other great news of the day is that after this video was taken, she was able to change his diaper. He was back in the incubation unit for this portion of the day, but seeing that was something special as well.

His diapers are very, very small, and she still had to fold the top portion down to fit his little body. He didn't fuss at all and was loving Mom helping him.

She changed his diaper, trust me, there are many more photos of such and after that he fell asleep and we were on our way, smiling!

Thank you all for your comments, prayers, and well wishes. We are doing well at present and will be posting again tomorrow.

Goodnight all!

Great News!!!!!!!!

There are a few things I never thought I would say. Today I'm saying one of them!

HE POOPED!!!!!!! WHOOOOOO HOOOO!

Since I have not talked about this before, the back story is that he has not had a movement in his bowels since birth. The main reason is that he has been taking on very little food to begin with, but they have been feeding him 3 ccs of breast milk every 2 hours for a day or so now.

This means that his digestive system has worked to completion and that is a good thing!

We will be seeing him soon and Mom might write soon. We will check back later today with updates.

Monday, September 20, 2010

Closing in on 72 hours

First of all, thank you all so much for the prayers, well wishes, and comments. Julie and I are reading them together and finding so much strength in them. Thank you all.

So the doctors have said all along that we are in the "honeymoon phase" of this journey. Both us and him, they say. We are because we have a new little one to shower with love and prayer. He because they say that his body has yet to "discover" that he is out of the womb.



He is in an incubation unit that is heated and is pumped with moisture that simulates 80% humidity. He is also under lights to battle jaundice and to heat the unit. That is why in some of the photos he appears blue in color.

The doctors say that after 72 hours, his body will eventually realize that it is no longer in the womb and that is when things can change.

It is with that introduction that I tell you all that we were down at the U today and saw the 66th hour pass.

He is doing great!



The doctors put a second PIC line (defined here http://medical-dictionary.thefreedictionary.com/PIC+line) into his left leg today. This will enable them to provide him with medicine and allow them to measure internal functions. They had tried to get a second line into his navel when he was born but were unable to get it done.
This line allows them to remove the first one in his navel so that can heal and close.

He looked great and responded to our voices very well. He even put on a show a bit waving his arms while they were trying to do an X-ray.

The X-ray was used to check his heart which exposed a small hole between the upper and lower chamber. The doctors explained that this was no real shock to them and that it was nothing to get too worried about. We will follow those instructions to the letter ha ha ha.

video


At any rate, we are beat. Exhaustion has set in once again and must be addressed. We are off to bed.

At some point I will be able to describe some emotional thoughts I have, but now is not the time.

God bless us all and I will be updating tomorrow.

"Hello Earth"

WOW! Where to begin....................

Those of you that know, welcome to the easiest site for updates. Those that don't know, the story starts here.....

I was running from the entrance to Costco to the car on a rainy Thursday night. It was 11:00 pm and I rang my wife, as is our custom when I get out of work. She didn't answer so I figured she was asleep. Boy was I wrong!

Most times my trip home takes 20-30 minutes, so the miracles of the night, and all time until today, just started. My trip took me 15 minutes to get into our community. At that time, she called me to tell me she was sleeping and missed my call. Normally, no big deal, so I began chit chat when she stopped me to tell me she had experienced a "cramp" and was now lightly bleeding into our bathroom toilet.

Being 26 weeks pregnant, we figured I would pick her up and take her to an emergency room, no big deal. The next call, 2 minutes later, as I pulled up to the door to get her, was a tad more frantic. She was REALLY bleeding now and time was of the essence.

I went inside and figured she would be downstairs ready to go and found nobody there. My mind raced into very bad places and I screamed for her. I found my Sister at the top of the stairs (another miracle that she was there) pale faced and my wife in the bathroom, her underwear covered in blood and panic stricken.

We rushed her into the car and down the highway we flew. "Only" 40 minutes to the hospital. I kept a countdown for her as she complained that she had to go to the bathroom the entire way. I am no doctor, but I figured that was not a good plan, given the flow of blood I saw back at the house.

We got to the emergency room right around midnight and she was rushed in. The first nurse examined her and as she lay there in bed, she covered pad after pad with blood. I can safely tell you this was the scariest thing I have ever been a part of. As she turned to me with the worst look in her eyes I have ever seen and managed to whimper "I am loosing the baby," my whole world crashed.

I held her hand as the doctors examined her. I called her family, then mine, then a friend I was on the phone with when she rang in the first time. Word traveled quickly at that time of day apparently as we were the recipient of what can only be described as answered prayers.


The doctor diagnosed her as being fully dilated and fully phased. Quite a shock this early into the pregnancy and VERY shocking given that there were no contractions. At this point there was no choice, this baby was going to be had right here and now. We were given the decision to have a C-section or attempt a vaginal birth.

The doctor apprised us of the pros and cons of both and pretty much told us we had no more than a couple minutes to decide. Seeing that a vaginal birth (my wife's preference all along) may be too traumatic for the baby at this point, we opted for the surgical procedure.

We were rushed into an emergency C-section and mom was a pillar of strength in the face of such adversity. For a woman that fears needles over anything else, she took everything like a champion. The same could not be said for her husband who had his entire body in his throat through the entire procedure.

He was born at 2:01 AM on the 17th of September and let the world know of things to come with 3 short screams before he was surrounded by 5 of the best doctors we could ask for. He was being worked on right there in the same room while Mom was being closed up.

He was moved downstairs into the intensive care unit while Mom was transported into her hospital room for rest and recovery.

I went down to see him a couple hours later and took the photo at the top of the page. I was flanked by the best support in the world in the form of Matt, Tony, and Brandon. We took a couple moments to chat with the lead doctor about what to expect and I heard nothing as I looked past him to take in every single sight of him I could. After all, this might be the only time.

We left and went back to Mom's room to show her photos and take care of her. About 3 hours later, we got a phone call.................


The doctors decided that the hospital we were at (one of the largest in the state) did not have the facilities to properly care for a baby of this size. He was under 2 pounds at birth (900g) and was 13 1/2" long and was going to require more than they could provide.

So the flight team rolled him up, in an incubation unit, to the room so Mom could see him before he took off for the University Hospital. We spent a moment together, with 6 or so total strangers in flight suits, before he headed for the roof. Unfortunately, heavy fog had set in and so they couldn't get the chopper off the roof and so an ambulance ride was in order to get him out of there.

Since then, he has been fighting every single step of the way, to stay alive. He has made tremendous progress so far and has shown a spirit beyond my comprehension.

He is off of forced breathing as I type this (off after 36 hours) and is taking on breast milk. Both of those, as we are being told, are amazing feats that babies in this condition do not undertake so quickly. Miracles DO happen.

Mom is here at our home and is sore, but recovering. Baby is doing great so things are off on the right foot.

This site will be updated with photos and video every day so you can all follow his progress. Check back as you wish and feel free to leave comments.

video


In all, God is great and has been holding this baby from the start. The road is going to be long and will have its ups and downs, but, so far, everything has been positive. Keep us in your prayers and I promise my writing will get better and better as we go. Mom will write at another time, but her input is included in every posting.

No name has been selected yet, but we are getting closer so at this point we are calling him "little man" or "buddy" or just "baby"

Take care everyone and thank you all so much for your unconditional love and support. We love you all and he does too!