2 Months Old

This picture is a half awake- pirate-eye picture. Colt's old enough for immunizations now.... 8 weeks old. So they ordered his 2 month immunizations. I don't know if he will get those tomorrow or what, but they did say he may get a fever with it. I guess that is normal. Hope it comes and goes fast. Toby also said he would put a call into the surgeon about the hernia to let him know that he will be needing the surgery sometime in the near future. He is still tolerating his feeds well and had a much better night last night and a good day. He slept the whole time I was there again, which is great! He needs all the rest he can get to keep growing.

Better Still

Colt was doing pretty good today. Still seems pretty tired but no signs of infection from the cultures. They discontinued his antibiotics and took out the IV today. So it is time to rest and recuperate. He was really sleepy, he slept the whole time we were there. Opened his eyes for a few minutes and went back to sleep.

A Bit Better

Colt had a better day than yesterday today. He was a bit more fiesty which is good. The consensus is that he is probably not sick, as so far his cultures have come back negative, although he is still on antibiotics to be safe. They will discontinue them either tomorrow or Friday if nothing grows out. They think that rather than being sick, what happened is that he just wasn't ready for the nasal cannula. The CPAP still does some work for him, and on the nasal cannula he really has to work and do the breathing. So after 2 or 3 days of that, it just pooped him out and he gave up. He doesn't have a lot of reserves for energy so it took all he had to do it himself. So they will just watch him closely and see how he does. He was moved to a new place last night, so he doesn't have his nice window view anymore. He's in a little room with two other babies right now. The other babies are small in normal standards (probably 5 pounders) but they look huge compared to Colt. Speaking of weight.....we're one ounce away from three pounds! He was 2 lbs. 15 oz today and is 15 inches long.

A Few Steps Back

Colt was not himself today, really lethargic and he's normally so fiesty. He had a rough night last night and into the morning. He had a few large episodes with his saturation dropping to the teens (it is supposed to be 85-90). His heart rate dropped really low a few times too (to the 40's and it is supposed to be in the 150-170 range). It happened twice while we were there, and on the last episode it was pretty bad so they had to put him back on CPAP because he just decided to stop breathing. They are giving him some help again with the pressure and will do a blood gas to see how he's doing a little later. If he gets two good blood gases and does better- he can go back on the nasal cannula. They gave him blood today, Papa Denny's blood (that'll do the trick)....because his hematicrit was low. They ran a blood culture and blood work to see if he has an infection that is causing all of these problems and his white blood cell count was fine. They're still going to start him on antibiotics just to be cautious, while they wait to see if the cultures grow any bugs in them. This is all just part of the NICU experience, as we've been told numerous times. A few steps forward, and a few steps back.

BLOOD DRIVE INFO

December 21, 2007 from 10am to 3pm at the Meeting Room at the Canyon Lake Property Owner's Association Building: 31516 Railroad Canyon Rd. Canyon Lake.
When scheduling an appointment online, please log on to www.sandiegobloodbank.org,
click on "appointments" and provide sponsor code: CCLL
Please eat a good meal and drink plenty of fluids before donating blood.
All donors must show proof of identification. Please pass this information on to a friend if
you have given blood in the last eight weeks (16 weeks for double red cell donations).

The Big Picture

Today we had our meeting to get the big picture. I apologize in advance for my long-winded post. I wanted to include the details of our meeting, as it will be hard to remember this when asked. So here is the big picture:
1. BIG BOY CRIB
He can be moved into an open air crib when he reaches 1500 grams (he is 1200 now), and can maintain his temperature. He needs to be able to maintain a temp of about 26-27 C on his own, and right now he fluctuates from 26-30 C. His isolette has a probe attached to Colt that heats up when he cools down and vice versa to help him out in that area.
2. HERNIA SURGERY
He will need surgery prior to going home, or he at least needs to weigh 1700-2000 grams. (Just to talk in normal terms of weight, 1000 grams is 2.2 lbs. The hospitals deals in grams and kilograms so we get used to talking like that. He needs to weigh over 4 lbs. before surgery).
3. LUNGS
Since he was so premature, the lungs obviously weren't ready to breathe on their own. He's done well on the transition from ventilator to CPAP to nasal cannula. The issue at hand is what the long term effects of prematurity will be. He may suffer from Chronic Lung Disease, which as I understand it is a condition that he may grow out in the course of a few years and can result in asthma-like symptoms but isn't actually asthma. He may need a nebulizer for that or he may not. He may also have Reactive Airway Disease, which is a condition that makes him sensitive to weather and season changes....ie. allergies. These are maybes, and would be a result of the prematurity. The guess was that he will not go home on oxygen due to his progress on the machines so far.
4. NUERO/BRAIN
They will do a CT Scan or MRI prior to him going home to check on the bleed. So far on his ultrasounds the ventricles are regressing and the bleed is being absorbed and no clots have formed. The outcome of the bleed, and whether it will have motor skill/developmental issues will not be seen until preschool years.
5. EYES
They check every week for vision problems as preemies usually get some kind of vision problems. But in my eyes (pun intended)....glasses aren't so bad if that is the outcome, he can be like his Mom then. So far no problems are visible. They are checking for ROP which I mentioned before- which at times is correctable with laser eye surgery if it is bad enough prior to going home.
6. HEARING
Checked prior to going home.
7. IMMUNIZATIONS
He gets them in 6 days. He said he'll probably do better than a term infant since he is so used to getting poked already.
8. BLOOD GAS TESTS
These are discontinued now...yippee! No more getting poked, unless he starts showing signs that he needs to be checked.
9. BLOOD
No blood for now. He is producing his own red blood cells, so they started him on iron to help out rather than giving him more blood.
10. APNEAS AND BRADYCARDIAS...AKA: EPISODES
These little episodes he has should go away with growing age (in the hospital prior to going home). From about 36 weeks on these should slow up and eventually go away. Right now he is easily overstimulated as his neurological system can't filter out excess stimuli.
11. GO HOME PLAN
I saved the best for last. The go home plan on paper (ie. what they have to tell us) is to plan on his due date, give or take two weeks. The due date was January 25th, so we have 2 months to go. He needs to successfully master 4 things prior to going home: Temperature control, Feeds by mouth, Weight Gain, and not needing supervision/intervention. He is well on his way in all four areas, so I know it may be false hope.....but if he keeps up the progress and doesn't hit any major snags maybe we can get him home sooner.

Acid Reflux

Colt had a pretty good day today. He did have some more Bradycardias and Apneas (heart rate drop and desaturations). They are noticing them to be around the time of his feeds, which they believe is due to some acid reflux. He had quite a few of them today, and may want to put him back on the CPAP snorkel mask- yuck. But they're going to give him some more time to see if the acid reflux is the cause. He is on some medicine to help him with the reflux. Tomorrow he will have bloodwork to see if they need to give him blood. He had an eye exam and nothing to report from it. He gained a little more weight since yesterday and is almost 2 lbs. 10 oz. We'll have much more info tomorrow after we get the long term plan from our meeting.

Surprise!

Today was such a pleasant surprise. Colt was taken off of the CPAP and put on the nasal cannula. The circles on his face are little sticky patches that hold the nasal prongs on his face. So he's off of the big bulky air machine. Very exciting news....so now we can see his sweet face. They are trying him out on this new machine that just has an oxygen flow for him, and will watch him to see how he tolerates it. In 7 days or so he will get his first immunizations...can you believe it will be two months next week? He'll probably get some blood on Monday- Toby said he looked a little pale so they'll do that for him Monday. They also may discontinue the blood gas tests if he continues to do well on the nasal cannula. He weighed in at 2 1/2lbs today! It looks like for now he gets to stay at Children's hospital, two of his neighbors get to go home tomorrow so there is room if any new babies need to show up.

All Swaddled Up

Shannon had Colt all swaddled up today and he really liked that. He was like a little burrito. The little tape on his nose by the tubing is just there to protect his nose from getting sore from the tubes. Colt had a good day. He just slept the day away, I held him for awhile and he slept the whole time. He woke up right when I was leaving, just in time to get fiesty and make me feel bad for leaving. Nothing really to report, tomorrow they will do labs in the morning to check electrolytes. His blood gas this morning was good too. Monday we get to meet with one of our nurse practitioners to talk to her about the next steps in getting him home. He weighed 2 lbs. 7 oz. and is seven weeks old today.

Happy Thanksgiving!

Happy Thanksgiving to everyone. We have so much to be thankful for.....we are thankful for our beautiful son Colt, his beautiful big sister Kelsey, we are thankful for the nurses and doctors that take care of Colt everyday, and for everyone who cares so much to check the blog and pray for our family.

Today Colt was doing well on the CPAP, he was a little fiesty while we were there as they gave him a new little mask and he wasn't too happy with the fact that it kept slipping off and had to be readjusted. We met with Toby this morning who informed of us some news. Colt may be switching hospitals soon. This is a good thing and a bad thing. He is doing so well that he doesn't necessarily need the high level of care that the Children's Hospital NICU is there to provide. So they may move him to a lower level NICU, to Palomar Hospital, so he can keep growing. It's great that he is doing well enough to not need that high level of care, but we will be so sad to leave our nurses and doctors because we have grown so fond of them all. Toby says Palomar is a great hospital with great nurses too. They only have 6 bed spaces at Palomar so it is a very personal experience. Children's has 40 and is a busy kind of atmosphere. For now he gets to stay, but if they get in a bed crunch and need his space for a sick baby then he will get moved.

That's all for now! Hope everyone has a safe and happy holiday! Here is a short video of them moving Colt back into the isolette...it's cute because he was wide awake while they did it so his eyes are open. Kinda looks like he is waving on the way back in!

Colt's First T-Shirt

Colt was passed out while Daddy held him...he looks just like his Dad does when he's sleeping :)

Colt's first T-shirt! We found one that fits finally so he can now start wearing clothes since the lines are all out. The few wires left on him are probes for temperature, heart rate and oxygen saturation. They turned off the rate of the CPAP today (so no more breaths per minute given, just pressure being blown in the nose) so he has to do more of the work. He did well on that all day, and we're trying to work our way to the less invasive looking tubes in the nose. This one is so bulky, and uncomfortable looking. The head ultrasound looked good- as in no change. Here is a short video of Colt moving around in his home and one of Maggie moving Colt onto Kreg's lap.

A Quiet Day

This is Maggie taking Colt's temperature in his home. Today was a pretty good day, he got some much needed rest after a very active night. Apparently he was really active all night and didn't want to sleep. I went in to hold him for awhile and he slept in my arms for a few hours. He had an eye exam today, and everything looks okay so far. They will check him every Sunday. Tomorrow he gets another head ultrasound. They also weaned his rate on the CPAP machine to 6 breaths per minute, and will hopefully turn off the rate soon and just go to pressure if he tolerates it. Sorry for the quick post.....holiday traffic pooped me out! Hope everyone has a safe and happy holiday week!

A Better Day

Dad got to hold Colt today for a few hours! Colt loved being held by his Dad, he did really well being held. He really seems to like it. Colt did much better today. We got to meet the Occupational Therapist today, she goes around and does assessments for each baby and puts up a developmental plan for each baby depending on their age. Colt gets a new one every two weeks or so. At 32 weeks they will be more hands on with him, but right now they just tell us what we can expect from him at his age. She told us that holding him is the best medicine for him now. At 32 weeks babies can start to develop the suck/swallow/breathe reflex which they need in order to coordinate eating and breathing. So they will start coming by around then or maybe a little later (34 weeks, as boys develop it later sometimes) to start trying to get him on bottle feeds. He is a little over 30 weeks post-conception right now, and 6 weeks old. He weighs in at 2 lbs. 6 oz, and measures 14 1/2 inches long (an inch and a half longer than at birth, and almost a full pound heavier). They are adding calories to his feeds so hopefully we can fatten him up! He also graduated to a larger diaper today, no more tiny ones- he outgrew them!

A Quick Ride on the Roller Coaster

Today was a bit up and down. The hospital called me this morning to tell me he was having a hard time and they couldn't figure out why he was dropping his heart rate and desturating so often. They almost had to reintubate him, but Tabitha then noticed that his feeding tube had slipped all the way up to 12 (it is supposed to be at 16 I think) which means his feeds were being pushed in too high and he couldn't breathe very well. Tabitha and Toby are our heroes once again :) Miracle workers! So they fixed that and he seemed to do much better. So then when I got there, he decided to have a scary episode, had to get bagged (bag breaths given manually) and turned a little blue. That's always fun to watch! His nasal prongs had slipped out so he wasn't getting the pressure he needed, so they went to a larger set that reached into the nose further and that helped. I got to hold him for about 2 hours and he did really well. We got to hear him cry for the first time, and there is a short video of it.........at the bottom of this post so turn up the speakers- it's pretty little, just like him!

On another note, Colt is very proud of his big sister. Here is a photo of Colt's big sis and Dad at the ice skating rink where we took her to celebrate straight A's, Honor Roll and Student of the Month. Colt is proud and hopes that he can follow in her footsteps.

Not Much to Report

Colt had another good day today. Not much to report. He had a good blood gas, good labs, and they were able to wean down to 6 on the rate he has (the breaths per minute) that the CPAP is delivering. They will get him down one more setting and then turn the rate off and just give pressure up the nose to keep the airway open. He was much calmer than yesterday so that was good. Not sure if the PICC line came out yet, last I checked the NP hadn't made his way over to write orders yet. I will call again when the unit reopens to see and update this if any changes occur. He did make it to full feeds today 18.5 ml every three hours. They started him on some reglan for acid reflux to help with the feedings.

UPDATE.....PICC line is out!!

Don't Take Colt's Pacifier Away

This is what happens when you try to take Colt's binky away....red face, nostrils flared, and the faint noise of a sore throat trying to cry!

And here he is happy as can be with the binky! Today was a good day. Colt had some serious energy today, he was keeping Shannon busy today trying to keep him calm. The PICC line will come out tomorrow instead of today, but he is still doing well on his feeds. He gained a little more weight, he is 2 lbs. 6 oz. now. He is getting another eye exam sometime in the next few days, they check for ROP (retinopathy of prematurity). They can actually do laser eye surgery on babies who have it to try and correct possible vision problems. So far he doesn't have it. Shannon also said he is doing well on his body temp. I think they start to turn the warmer down slowly so he learns to regulate his own body temp, and can then graduate to a real crib!

More Progress

Colt had a good day today again...more progress to report. He had a good night and good blood gases while on the CPAP. Our night and day nurses both said how much he adores his pacifier. He is almost at full feedings, so they discontinued his TPN (nutrition in a bag given via IV), so they will get to take out his IV tomorrow!! He is also tolerating his feeds well. We are so excited about that, one less line in him. They also have moved to testing his blood gases once a day, so now he only has to be poked in the morning.

Eve UPDATE: Still doing well! One thing I have never mentioned before are bradycardia and desaturation. These are what the "episodes" I have mentioned before consist of. The bradycardia is a heart rate drop, on Colt's doing...sometimes they just drop it on their own because they are mad/overstimulated, etc. The desaturation is an oxygen desat which also can signify being mad, pain, upset, uncomfortable. He has had many of these since day one, and usually the nurses must intervene in some way by increasing oxygen, comforting him, rubbing his chest, giving meds, and other ways. He has had a few of these while on the CPAP since yesterday but all three nurses he has had since then have told us that he recovers on his own, without intervention. I thought that was pretty interesting! Thank you again for checking on Colt, it is really nice to know how many people care. One fun fact...I put a site counter on here less than 2 weeks ago just to see how many people "hit" the site....it is now at 3,700 in two weeks!!!

Extubation Day!

Colt was extubated today! Yeah! He did well off of the ventilator all day- they took it out at about 11am. He had great blood gases once off of the vent, and seemed to like it much better (besides being a little pissy with the nose prongs). He sincerely loves his pacifier, he was crazy about it today now that he can really go to town on it without a tube down his throat. He also now weighs about 2 lbs. 5 oz (just shy of that). Sorry for the bad quality photos...sadly I forgot the camera at home and these were taken with our cell phones.

The new tube in the nose is a CPAP. It delivers pressure so that the airway stays open for him to breathe. He will be on the new air machine for a little while, and then he'll graduate to a nasal cannula which is a tiny little oxygen tube that goes in the nose much like at the dentist when you get the laughing gas. The hat he has on (sadly it is pink, Tabitha was really upset about that but it only comes in that color) but it attaches to the CPAP by velcro so the unit stays on.

Progress

This is Colt sucking his thumb while I was holding him today! It was pretty darn cute. Colt may get extubated tomorrow, he is down to 12 on his vent settings and they may start the steriods that will precede the tube getting pulled out. He also has graduated to sharing a nurse as he is stable enough to not need that kind of supervision, and he can now be touched more often. Before he had his own nurse and could only be touched during the 8am/pm and 2am/pm times. They also started to add calorie fortifier to the milk he gets to help fatten him up!

I made a mistake on the blood bank info. The Canyon Lake date is the 21st of December at the downstairs room in the Canyon Lake Property Owner's Association building. I will give directions to the location and times as soon as I hear back.

Blood Drive....Please Save the Date

Colt did pretty well today, though his heart rate was a tad high today. They weren't totally sure why, but said it could be an increase from his caffeine dose. He does for sure have a hernia, but it is okay as they said something like %95 of boy preemies have one and it is an easy fix. They will repair it before he comes home. His lungs were also not looking so great, they were wet again- which means he needed a diuretic to help him let go of the fluids. The cultures haven't grown anything out yet (the ones they are tesing for an infection) so that is so far so good. Tomorrow I will get to Kangaroo the little guy again....I am looking forward to that! No plan for extubation as of now, just giving him some time to come further down on his settings and mature some more.

The San Diego Blood Bank is having two local blood drives soon. They are really low on blood because the fires caused them to have to cancel a few drives, and they have been vital in helping us with Colt so we would like to pass the info on and encourage people to donate. I will post the info soon but the dates are December 23rd at the POA room I believe, and the 28th at the Trevi Entertainment place. More info to come! If you're O positive...your blood can even be saved special for Colt!!

Quiet Day

Today was a pretty quiet day. Colt had a pretty good day, no big changes really. They keep going up on his feedings, he's at a whole 9 ml every three hours now. He needs to get up to 18 ml every three hours to be on full feedings, and then he can get the PICC line out (the nutrition line) as long as he tolerates them well. He had a little reflux today which is extremely common in preemies. He also may have a hernia, but the nurse said they can usually fix it by pushing it back up and would only require surgery if they couldn't do that. She said it felt like it could be pushed in, and even if he did need the surgery it is minor and they'd probably wait 'til before he went home. They also cultured his tube and PICC line to check again for infections to be cautious.

I got to have Kangaroo Care again today. (Skin to skin is what they call it for full term babies). Here is a little info I thought was very interesting on Kangaroo Care. You basically get to put the baby in your shirt like a baby kangaroo!


Kangaroo care is a way of holding a preterm infant so that there is skin-to-skin contact between the infant and the person holding it. The baby, wearing only a diaper, is held against the parent's bare chest. Kangaroo care for preterm infants is typically practiced for two to three hours per day over an extended time period in early infancy. With babies who are medically stable, there is no maximum duration for kangaroo care, some parents may keep their babies in-arms for many hours per day.
The label kangaroo care was chosen to describe this strategy because the method is similar to how a kangaroo is carried by its mother. It is estimated that more than 200 neonatal intensive care units practice kangaroo care today compared to less than 70 in the early 1990s. One recent survey found that 82 percent of neonatal intensive care units use kangaroo care in the United States today.
Researchers have found that the close physical contact with the parent can help to stabilize the preterm infant's heartbeat, temperature, and breathing. Preterm infants often have difficulty coordinating their breathing and heart rate. Researchers also have found that mothers who use kangaroo care often have more success with breastfeeding and improve their milk supply. Further, researchers have found that preterm infants who experience kangaroo care have longer periods of sleep, gain more weight, decrease their crying, have longer periods of alertness, and earlier hospital discharge.
Not all areas in the world have resources to provide technical intervention and health care workers for premature and low weight babies. In 1978, due to increasing morbidity and mortality rates in a NICU in Bogotá, Colombia, Dr. Edgar Rey introduced a method to alleviate the shortage of caregivers and lack of resources. He suggested that mothers have continuous skin-to-skin contact with their low birth weight babies to keep them warm and to give exclusive breastfeeding as they needed. This freed up overcrowded incubator space and care givers.
Another feature of kangaroo care was early discharge in the kangaroo position despite prematurity. It has proven successful in improving survival rates of premature and low birth weight newborns and in lowering the risks of nosocomial infection, severe illness, and lower respiratory tract disease (Conde-Agudelo, Diaz-Rossello, & Belizan, 2003). It also increased exclusive breast feeding and for a longer duration and improved maternal satisfaction and confidence. (Charpak et al., 2005)

Gettin' Blood Day

Today Colt is at the vent setting of 14, we are trying to make our way down again. I think they will actually try to get to 10 before the extubate, and also get his pressures on the ventilator down as well. His blood tests this morning indicated low red blood cells, so he was getting blood while we were there. They will recheck tonight and see if he needs anything else as it also looked like the platelet count was a bit low too. No talk of extubation today- and I was happy with that. I really wanted him to have a few days off before they try to push him through that whole ordeal again. I think one of us will get to hold him again tomorrow, they told us every other day for holding since it is such a big thing to move him around while he's hooked to the ventilator. Maybe tomorrow Dad can have skin to skin contact!

Mellow Friday

Here is a picture of me and Tabitha getting Colt all set-up on my chest. They let me hold him on my chest for about 2 hours.......pretty cool! He had a really good day, he was comfortable back on the vent. His blood gases were good. Tomorrow they will run a bunch of blood tests to check him out. They are going to POSSIBLY try again on the tube removal tomorrow...scary! When they check his hematicrit and caffeine levels (if it checks out) they may pull it again. Hopefully it works this time, as they were able to get him some steriods for his lungs. They went down on his pressures again today so that was good. That is about all for now!

Sore Throat Day

Here is Colt without any tubes or tape!!

Wow today was nuts! So Colt was not supposed to get extubated (tube out) until tomorrow but during a re-tape of the ventilator tube, it slipped out so the consensus was -let's leave it out now and see what happens. Initially he did okay....he had it out for about an hour and a half. The last half hour got pretty rough, he was not having it. He was really mad and his vitals were all over the place. They ended up having to re-intubate him which was kind of a bummer but he just wasn't ready. They say this is normal, and that the only way to find out if he's ready is to give it a try. So they will put him on the steriods and give him more time to get ready to breathe on his own.

On a happy note, Kreg got to hold him for the first time. They say we can start holding him more frequently as long as he's doing well. And we also got a photo of his cute little face without all the tubes and tape. It was nice to see him for the first time without all that junk on there...damn he's cute!!

His head ultrasound was good, so they won't do another one for 2 weeks. They will just see how he does now on the vent and progress him down again on the vent and pressures, and let the steriods do their job before we give it another shot.

Holding Colt

Today was a pretty awesome day. Our nurse, Jillian, let me hold Colt for the first time. I thought we couldn't do that until the tube came out- but they let me anyway! Here is a video of it....it's a pretty interesting affair to get him out of his home. He had a very good day, they worked their way down on his pressure on his vent and he's still at 16 on the vent. They may start him on some steriods tomorrow to boost the lungs up so that they can take the tube out hopefully on Friday. They will also do another brain ultrasound tomorrow, and if it is still stable then he won't have to have one for a few weeks.

2 Pounds!!! Woohoo!!!

Colt weighed in at 2 pounds today! Woohoo!! We're pretty excited! Colt is at a ventilator setting of 16 today. He had good blood gases. He was the most active I have ever seen him yet. Shannon, our nurse, was telling me that she saw him push himself up like a baby push-up. I didn't believe that he could do that, but a little later he showed me!He was moving his head around, and had his eyes open.

Colt's Journey Slide Show

Make an on-line slide show at www.OneTrueMedia.com

Not Much Going On!

Not too much to report today. His chest x-ray was much better today. They were able to wean down on the vent settings to 18...we're shooting for low settings so he can get the tube out. He needs to get down to 10 or 12. They will do a full blood panel tomorrow. I have a really cool slide show to post tomorrow, as soon as I can get it finished. That will make up for my short posts this week!

He's been pretty active lately. Here is a photo of Kreg and Colt. Colt opened his eyes right when Kreg put his hand on him, he knew his Daddy was there!

Fiesty Lil' Guy

Colt was being fiesty again today- he had a high heart rate. They ran some tests to make sure it was not an infection, and his white blood cell count was perfect so no infection. His hematicrit was low again, so they gave him blood. As soon as the blood transfusion started the heart rate came down, so it seems he was "dry" (low on blood volume). He was doing well when I left. They went up on the vent settings to 20, and up a little on his oxygen percentage.