Colt's 1st Halloween

Colt was pretty excited about his hat as you can see......no changes today. All is still going well. More updates tomorrow, they're running some tests tomorrow so we'll have more of an update then!

Happy Halloween Everyone!

Colt's had a pretty good day- a few testy moments here and there but all in all a good day so far. I have a really cute halloween hat for Colt from Grandma Mary for later on.....we're waiting to see big sister all dressed up before we head down there. I will post a Halloween picture later on tonight! Hope everyone has a safe and happy Halloween night!

Dad's Diaper Change

Sorry you have to watch it sideways!! I can't figure out how to flip it!

Here is the long awaited diaper video with Dad! He got off easy with a pretty easy diaper :)

Another good day today. He kicked his arterial line out today- and they decided he could leave it out. They will space out his blood gas tests to twelve hours now, and take his blood pressure with a miniature blood pressure cuff. One less line in him. The caffeine is working to stimulate his breathing....he's still doing well with that. They also started with the feedings again! He found his own thumb this morning and was sucking on it....we weren't there but Tabitha got a picture of it for us. When I get it, I will post it!

This is a short video of Kreg holding Colt up while we change out his bedding!

A Really Great Day

This is a photo of Kelsey's, Colt's and my hand from the other day. I thought it was cute and forgot to add it the other day!

Colt had a really good day today. They went all the way down to 18 on his vent settings (they were at 25 two days ago). They gave him some caffeine to stimulate him to start working on breathing by himself and it's working! We're really excited about that. He also was taken off of another antibiotic and they are starting to wean him off of the hydrocortisone for his blood pressure. He didn't really have any desats today (when he goes down on his oxygen exchange) which is really good too. All around good news! I am really thinking that tomorrow is the day for Dad's diaper change. Tabitha and I are already planning for tomorrow........I'm going to try to video that so stay tuned!

Another Good Day

Today was another good day. Nothing much to report, they did take him off of 2 of the antibiotics as nothing is growing out on the cultures. He was pretty active today...more eyes wide open! There is still is small portion of the lung not expanding so they're watching that little area. All else was well today. Since I can't hold him for a long time, Tabitha let me "lift" him while we weighed him. So for a few seconds he was just in my hands. He has gained a little weight. He's now 810 grams, which is between 1lb. 12 oz. and 1 lb. 13 oz. I can't wait til he gets to 2 lbs! He was 700 grams at birth.

Lots of Photos

Lots of photos today- we had our own little photo shoot. The first one is Kelsey and I while taking his temperature from his armpit. The second one is Colt snuggling his blanket, the third one is me taking Colt's footprint with ink for his baby book, and the last one is Kelsey with Colt and I. The NICU closes after tomorrow to all non-parental visitors for the cold and flu season, so we thought we'd take a bunch of pictures. My mom, Kelsey and I had a good visit with him today, we got to change diapers again so Kelsey and my mom could watch (Dad will have to do it tomorrow, for sure).

Nothing really to report...we got some good info from Toby our nurse practitioner. His lungs looked more ventilated with the last x-ray. He's almost done with his antibiotics, he has about 5 days left on those. He is doing well on his new ventilator, good blood gases. He had a pretty good day! Got testy a few times, he just wants to left alone to snooze :)

Three Weeks Old!!

Colt is 3 weeks old today! He had a pretty good day today. Tabitha had him all cozy and bundled up for us. He did well on his new vent all day, good blood gases. At diaper change time, we noticed the IV in his arm had slipped and had been allowing fluid into the tissue in his arm. So his little arm was pretty swollen. They moved the IV to his leg, and within a few hours it was almost back to normal. I got to wash his little head today, he's getting quite a lot of hair. More diaper changes also- Tabitha says tomorrow is Dad's turn to change his diaper!

What A Difference A Day Makes

So in contrast to yesterday, today was as Toby our nurse practitioner called it "wonderful." Colt was moved from the high frequency ventilator to the conventional ventilator. He did well on the conventional vent all day, good blood gases and good vitals. They also took out the chest tube, as the problem is resolved. No seizures today, and the EEG they had monitoring him all night came back with no seizure activity. That was about all the news we got today. They will keep on monitoring the infection with tests, and they put him on a new antibiotic. That's it......thank you all again for checking in on our little man- and for your kind words and prayers. We appreciate it more than we could ever say!

Wild Wednesday

No pictures today- he had more tubes than I wanted to remember. The day of not so great news started at 3:30 am (I am slightly crazy and call in every two or three hours, 24 hours a day). So at that time he had just been extibated (they had to take his tube out, because it slipped into the wrong location) and then re-intibated. This isn't the most comfortable experience so he was pretty agitated. He eventually rebounded to stable again by morning. His hematicrit and hemoglobin were low again so he received platelets. They said that they could be low because of how often they pull blood to run cultures and blood gas tests.

Shortly after my 9:30am call in, he started to have seizure activity and his vitals were dropping. They called us to tell us this- and that they had given him meds to calm him down. I got down there as fast as I could......and then they dropped more bombs. They said that the head circumference looked larger which could indicate swelling and the seizures could mean more bleeding. They ordered head ultrasounds and an EEG to measure brain activity. They proceeded to say a bunch of scary things I won't repeat and then we just had to wait it out. The EEG really pissed him off. They had to put 8 electrodes on his head, they don't hurt but they had to scrub the head and then tape them on. His little forehead was all scrunched up and mouth open- he was trying to cry but can't b/c of the tube in his throat. The electrodes will stay on for 24 hours, so tomorrow when we go down they will have that done. They are basically looking for any abnormalities in brain activity. If they don't find any- they mentioned the possibility of doing a spinal tap to check the spinal fluid for infection. As if all of that wasn't enough, they had an IV slip out during the time they gave blood which means blood seeped into the tissue so his arm swelled up and he has a huge bruise. The only good news we ended up with today- was that the head ultrasound did come back this evening and it shows no change. No more bleeding or swelling. Now they just have to figure out what the seizures are about.

Mellow Day

Today was somewhat mellow, which is nice after yesterday. He had a pretty good day...though this evening he started back to his antics of breathing issues. He is for the most part comfortable and stable today. They didn't run any tests today- so nothing to report. The blood cultures from a few days ago are still coming back negative for a blood infection.

I had a few people ask about the fires.....the hospital is not near any of them. They are actually going receive some kids if the other hospitals have to evacuate. 34% of the staff at Children's have been evacuated so it's been pretty quiet around there. The drive home to Canyon Lake was pretty eerie, nobody is out and the sky looks like a war zone. The house in Carlsbad is also not threatened as of now.

This picture is Kreg's wedding ring on Colt's foot- just for fun. I got to do diaper duty again today and give him a mini bath (basically wipe him down with a wet cloth). He wakes up whenever we do that, so we got to see his eyes open again.

Magic Mountain

Today's post is called Magic Mountain, because today was the craziest roller coaster yet. We got in today at noon and left at six thirty. We had to hang around because they were running a whole bunch of tests and they asked us to stick around. So what they told us earlier was because of his blood pressure being all over the place and his oxygenation being all over the place- they suspected something bigger was wrong. He also developed a new problem which is that his hematicrit and hemoglobin were really low- so they had to give him platelets. They told us that they gave him blood and his blood levels were still low and were very concerned. Also a series of bad blood gas tests (which measure how well he converts oxygen to CO2). They said that they thought the bleeding in the brain was getting worse OR he has a perforation in the gut which would require a very scary surgery OR it's a blood infection. None of these options were good, but we sat and waited and prayed for an infection (isn't that weird).

So several hours later what they told us is that 1) the bleeding in the brain is regressing (good) and the swelling that was in the brain is also regressing (good), 2) the gut x-ray looked "great" so no surgery......and his blood cultures for the infection came back negative. So seriously, I am at a loss! They said that since everything came back negative the cause of all those problems could very well just be from the infection we already KNOW he has (yeast in the lungs). His chest x-rays looked better too, the chest tube is helping. They redid all of the blood cultures to check for other infections.....oh yeah and he also has a bit of a staph infection in his arm from an IV. He's on three different antibiotics, so we're hoping those will work and that this infection isn't viral because if it is- they can't do anything. No pictures today, he finally got a day off of the lights and we wanted to let him rest since he was getting poked and messed with all day.

Big Sister

Big Sister was here for a visit this weekend! Kelsey came with us to the hospital, and was so curious as to what Colt "felt like." So our nurse Shelby let Kelsey touch him, and the verdict is.....he's soft. Kelsey got to watch me change his diaper and couldn't believe how small his toosh was!

As for an update, there were a few new things happening today. The chest x-ray finally showed something they could fix today. They had stopped the feedings due to the possibility of air escaping, and they weren't sure if the air was escaping through a hole in the lung or bowel. If it was in the bowel, that would mean a surgery to repair it. They determined this morning that it was a hole in the lung (the one that has a portion collapsed), and I guess that is a good thing because it is much easier to repair. So they inserted a little tube in his chest to suction the air out. It will stay there for a few days until the air continues to be gone. The evening x-ray showed that it was gone with the suction, so now they switch to water seal on the tubing to see if it remains gone and then they can eventually remove the tube. I think this hole is called a pneumothorax.

His blood pressue was a rollercoaster today so it was back on the dopamine to control it. It hit a level that was pretty bad right when we got there and once again got to witness an episode. They put him back on dopamine when it got really low and gave him some steriods. It seemed to do the trick, as it slowly came back up and his blood gas test was good. That's a good thing b/c the next step was epinephrin, and the nurse really didn't want to see that happen. He stayed stable the rest of the day and evening......I will call them a few hundred more times before tomorrow to check in:) Tomorrow is brain ultrasound day and more chest x-rays...brain ultrasound day makes me really nervous, so all we can do is pray like crazy for a good one. More on that and the infection tomorrow.

No news is good news.......

The new motto at this point is no news is good news. Today was relatively newsless. He had a touchy night again, just being a stinker as the nurse said with his breathing. He continued being a stinker well into the morning, but by noon he was rebounding back to stable and stayed there the rest of the evening. The nurse moved him onto his belly and he really seems to like that much better. The tummy and lung x-rays had no change. They took him off of the dopamine (which is a blood pressure regulatory measure) which means he can keep it where it needs to be on his own- so that is a positive. The lungs still have fluid in them, so still no feedings.

Nothing else much to report, it was a very quiet day at the NICU. I think we get another brain ultrasound Monday or Tuesday. They'll do x-rays about everyday to monitor the stomach and lungs.

More Up and Down

So today was results day.....some good some not so good. The brain ultrasound showed that the original bleed that he has had, is stable. The bleeding is being absorbed. The other side of this news is that there is another new bleed in a different location. The damage that these bleeds have caused will remain unknown to us...probably until he is 2, 3, 4 or 5 years old. They can't tell us what will happen, they just give us the worst case scenarios and possibilities. He remains in stable condition today, although he had a very rough night with breathing problems. Another episode much like the one we witnessed occurred overnight. They had to intibate him with a new tube size which they thought would help the breathing. It was followed by a really good day for him.......so more of the ups and downs.

The lungs are still "wet" which means some fluid is in there care of the infection....so he's on antibiotics for that and they halted the feedings again to try and get the lung condition in check. The feedings are not for nutrition at this stage they are more to get the stomach working, so he gets what he needs from his IV. They are trying to determine if this infection he has is in his blood, and if it is he gets a 6 week treatment of antibiotics- so we will see. They'll continue to monitor all of these things that are going on day by day.

Amazing Pics

So I got pretty lucky today and got to witness the eyes open for myself...rather than just hear about it from Tabitha! He had his eyes open for me for awhile, looking around- even though he can't see yet. He can just see shadows, but it was just me and him and I swear I felt like he could see me. I also posted a picture of him all stretched out, he looks so long! He's 13 inches long, and finally weighs a little more than he did when he was born (about 1.7 lbs.)

He had a good day...stable is good. He had ultrasounds on his belly and kidneys to see if they are functioning correctly and they are. He had a little infection in his artery line, so they took it out and put a new one in on his foot. He has tubes and lines all over the place, it's so hard to see him like that but I know they need each one. Tomorrow morning is the brain ultrasound, and I am praying like mad that it is better or at the very least the same. The lung situation was a little improved today, the right lung still has a section that is blocked (or collapsed) but they said the oxygenation was better today. He had another little pissy episode after they changed out his line, but I am sure that hurt.....it looked painful. They gave him some morphine and he was very calm when I left. I got to change his diaper again and they let me clean his eyes, mouth and change his sheets. Thank you for your prayers and support, it means so much to us. We look forward to reading everyone's comments and knowing we have such an amazing support system.

Rollercoaster Ride

Well the little man had an up and down day. Tabitha and Katie (the best nurses ever) told me when we got there today that they were so excited to tell us what a great day he had, unfortunately we had arrived right in the middle of an episode. My son is already trying to test me.......and it's working. He was having some breathing problems, so we walked into a crowd of people working on him which scared the hell out of me. Luckily though one of the nurse practitioners who must have seen the panic on my face told me that this is just part of the NICU experience.....good days and bad. They moved him on his belly which helped a lot, his oxygen levels were brought back up and he was stable again. So we stayed with him awhile and he was fine. I called in again just now and he is still doing fine. His chest x-ray is back to looking bad though. He has a section of his lung that is blocked, but they said they are trying to remedy it with more pressure and if that does not succeed then they turn to meds. Feeds are going well though, and they increased the amount again. Bathroom functions still all going well which means the plumbing is working well.

On a good note, the nurse took a photo of him today which I don't have yet. The most amazing picture I have ever seen...my little guy with his eyes wide open. A nice close up and it looks like he's looking right at you. I should have it in a few days and I will scan it in and share it. It is amazing.

Tuesday

Today was a good day for Colt. His chest x-ray finally looks better, so they think the antibiotics are working. They cultured to see if it is in fact an infection and I believe the 72 hours for that test are up tomorrow, then they will know. He was able to come down on the vent settings today, blood pressure was good and heart rate were all good. They started back to the feedings (they had stopped only to determine if the heart valve was open, which it is not).

They did not do a CT scan, as they decided there is no point in putting him through that. They have to take him out of the NICU and move him down the hall to the CT room, and it's a bit of a trip for him. So since the neuro consult said that they wouldn't even consider doing a surgery right now, there was no point. Although they did do a brain ultrasound and determined that the condition is stable for now, no additional swelling or bleeding. The bleed that has already occurred has stayed the same and would not need draining at this stage anyway.

Here are some pictures of his cute little foot, and him holding my hand. I got to feed him today, which just means I got to handle the syringe into his feeding tube. The pictures look a little funny because he's sunbathing today...we were trying to keep the interruptions at a minimum because his new neighbor is quite the screamer, and didn't want to open his incubator holes because it was so loud. Thanks again for checking the blog and for your prayers, we look forward to reading the comments every day!

Diaper Change

This video is kind of long....sorry for that. The update and new photos are in the two entries below (called "Monday" and "New Pictures"). You may want to start there first. This is the video of Tabitha and I changing his diaper....he was being a little stinker- he peed on the nurse and we had to change him three times in like 5 minutes. He just kept going after we'd get a clean one on! I never thought I would have so much fun changing a diaper......ah the little things :)

New Pictures

Update is below...here are some new photos!

Monday

I can't download the video or pictures from today...the site is giving me error messages. I will keep trying but a quick update for now......he is doing well today. Had a rough night, low blood pressure, but they were able to get him back on track today. They took out the line in his belly button and put a new one in on his other arm. So we can see his little belly button now.

He also went #2 again....this time while we were there- and I got to change his diaper! Kreg took a video of it which I will post, I also got to change his bedding. Kreg got to give him a kiss.....and we got some really cute photos which I will post soon.

No real news yet, they did order another CT scan which will be done tomorrow. We may not get news on it 'til Wed. as they are having neuro consult on it as well. His heart valve is not open again, which means he may have an infection. They started him on antibiotics to be safe while they run tests for an infection.

Sunday

Not much new to report today. He had a decent day, I guess he was a bit irritated. I would be too with all the tubes and machines. So they gave him a little bit of pain medicine and something to calm him down, and it helped him to keep his blood pressure down. The feedings are going well still, they increased the amount and he was able to go number two (sorry but I had to add that, because we were really excited that he could do that). He is still having some issues with his lungs, his chest x-ray was still not better. They are running more tests to see if it is an infection or if the little valve in his heart has reopened. If it has reopened, they may still need to do the surgery on his heart. The one good thing about the surgery is that once they close it, it won't open again. With the medication they used to close it the first time, I guess it is common and probable that it would open again. But it is still surgery- so that scares us. We'll know about that probably tomorrow or Tuesday after they do a heart echo. They'll also do a follow up on the chest and the brain ultrasound tomorrow. I'm not sure when they'll report results, we're hoping tomorrow night. They also turned off the sunbathing lights...so he gets to rest more.

On a good note, our wonderful nurse Tabitha let me give him a kiss today. She opened up the isolette (their word for little incubator) for a few minutes so I could get closer to him and see him better, rather than through the plastic. We love our nurses and nurse practitioner, the people that take care of these little babies are so amazing. It is so comforting when we go home to know that he is in such great hands.

The Binky

I had to add a picture of the binky....I mentioned it in the post before this one (which has all the info in it, see below).

Good Days and Bad.....

Hello.....Sorry for the delay in posting. We had kind of a bad day yesterday. His chest x-ray didn't look so good so they had to go back to the high frequency ventilator. But his blood pressure and all else is stable. The CT scan came back, and god love the doctors.......they don't really tell you much or at least enough to confuse the hell out of us. There is some bleeding, but the range of what that means is still unclear. They have told us the possibilities, but right now I am putting the possibilities in God's hands. It's up to him- not the doctors! So right now we're working on faith. We have fallen so in love with this little guy and his strength, he amazes me everyday.

Today I got to put the vaseline all over his little body. It was the coolest day ever. I really enjoyed that. They also gave him a tiny little binky because he was trying to suck on his ventilator tube, it is so cute!

They will do more tests on his brain to see how it looks- whether or not the bleeding will absorb or continue. It will be a few days before they know anymore about that. I hope you can pray with us that he will continue to get stronger everyday.

Moving Day

Colt has been doing well.....stable. We are moving to Carlsbad today so we can be closer to him, it's been tough driving down there everyday. Ted and Allison have so graciously offered us there vacation home down there, so we're packing up some necessesities and heading down today. We'll be back and forth of course- just a lot less than we are now. It'll be nice to just hop in the car and be there in 20 minutes.

They did another brain scan yesterday. In my extremely limited medical knowledge, I guess what they said is that the fluid they saw on the last one has decreased (which I think is good), but the brain has a little swelling (but he said he completely expected that as a result of the fluid being there). We don't really know what that means, and they can't tell us until they do a CT scan. They may do one today so we'll let you know what all this turns out to be as soon as we know. The feeding is going well, they increased the amount by a little. So far so good.

Diapers

His little diapers are so small.......and they're still too big for him. Here's one next to an apple so you can see how small it really is.

Pictures of Colt on his Belly

Today is another good day for Colt. They told us last night he will not need the heart surgery, the medication worked to close up the valve. So that also meant that they could start feeding him breastmilk through a tube in his belly, and he has taken about 4 or 5 feeds successfully. That means hopefully we can fatten him up a bit. They also did another brain ultrasound this morning and will know the results when we get there this afternoon. His blood pressure is good, he's working well on the ventilator and they were able to move him on his belly as you can see in the picture. It's better for breathing and digestion for babies this small to be on their bellies. They also turned off the "sunbathing" light he had to be under to break up the bruising and bilurubin, because that problem has been corrected.

Thank you again for all your prayers....we appreciate everything everyone has done for us. We're feeling good about his progress. We have a long road ahead, and I am sure there will be many more ups and downs. We've been told they have their good days and bad as they go through their growing process.

Good Day

Today is a good day for him....he's doing well the nurse says. We met with the doctors last night and they couldn't really tell us much. He's still too little to move him to run a CT scan or any of the more detailed tests, so for now they are just making sure he is stable and comfortable. They are keeping his blood pressure stable and he is doing well on the respirator.

I'm gonna turn this over to Kreg now.........

We want to let everybody know how much we appreciate all of the support that we have received. There are people praying for Colt all over the U.S. "and" Canada...We are truly blessed. Nicole and I cannot put into words how much you all mean to us and how much we appreciate all of the emails, posts, phone calls...everything. During such a unique time it is nice to know that we are not alone!!! I can not put expression or emotion into my post but please know that we sincerely thank you and appreciate your support.

Colt and Kreg

More pictures

More About the Incubator

This is a short clip that Kreg took of Maggie explaining the incubator and how it works. Colt's had two good days in a row. They took him off of the high-frequency ventilator yesterday and switched him to a conventional ventilator, so that he can do some of the work himself and is tolerating it well. They are not going to do a surgery as of yet, they think they can correct the heart valve with medication. They did a heart echo and a brain ultrasound, and we're heading to San Diego today to meet with Dr. Lane to hear the results. The nurse was optimistic about his progress.

Colt's Cocoon

This is a short video clip that Kreg took of Colt and his nurse Maggie.

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Colt with Daddy

This is Colt next to Kreg's hand...so you can have a perspective on just how small he is! Kreg's fingertip is the size of his whole hand. He weighs 1 lb. 9 oz. He looks a bit bruised from his travels, but he is doing well in his little cocoon.

October 7,2007

Hi Everyone,

Here is our little guy. He's been a fighter so far. We cannot thank everyone enough for all the phone calls, prayers, text messages, visits and support we have been given. We are so fortunate that we have such amazing friends and family.

We will try to post his progress on this blogspot as often as we can, as a means to try to update everyone who wants to know how he is doing.

We went down to see him today, spoke with his nurse and the nurse practitioner. He has his own nurse who sits with him all day, and one all night. They watch all of his vital signs and make sure he is tended to at all times. The hospital is so fantastic, and has the very best care for our little man. He had a good day today, he is stable. We will know more tomorrow when we meet with the doctors after they finish running tests and doing an ultrasound of his brain. We'll post more after we know more.....this will be a day by day type of situation.

Thank you again for all the prayers and support, it means the world to us.