Heart Surgery on the Horizon

Colton is doing well and gaining weight! As of last night he was 3 lbs. 8 oz. which puts him at exactly 3 1/2 lbs. They have him on full feeds and have been able (dare I even write it?) to put him on 24 calorie human milk fortifier so he is getting a nice amount of extra calories.

The big news the last day or so is that they are seriously considering (and sounds like they have decided) that they want to go ahead and repair the hole in his heart sooner than later. Now that the kidneys are under control they should have made more progress on the ventilator and are sort of stuck at where they are. Remember the hole in the heart is also contributing to the lung wetness. Also, his little body has to work a lot harder to grow with the hole in his heart. The doctors told me yesterday that they will be comfortable doing the surger when he hits 1.8 kilos (4 lbs.) In Colton's world, if he keeps gaining weight at the current rate it should be about a week/week and a half.

We obviously have lots of questions and not too many answers right now and personally, we are very nervous about a major heart surgery on such a little guy. As the date approaches that the surgery is on the near horizon, we'll fill you all in as we get details.

Small update

I've been hearing through the grapevine that Colton's Cavalry is getting restless with no update! :) Its been a busy last week for me as my nephew Bryant James Schaefer was born on Thursday 10/23. So strange to hold a full term baby, he felt so heavy at a whopping 7 lbs. Congrats to Brandon and Jackie!

Colton is doing well and the two big goals continue to be weight gain and ventilator weaning. They are tweaking his nutrition with various combinations of breast milk, fortifying powder, TPN and IV fats. He is getting quite the cocktail. I'll ask tonight to see if he has gained any weight but last I heard we were still hovering at 3 lbs. 5 oz. They reminded me that he has to work even harder to gain weight because of the hole in his heart.

Donny and I are on a mission to try and kangaroo with Colton every day. We try and alternate days because it requires longer hours to stay and do that. We both love it though. I actually feel proactive in his care by kangarooing.

Here is a little photo of Colton in his Halloween get up. I love this pic. P.S. ignore the IV in his head!

Here's another one that was taken over the weekend. Thanks to nurse Jami for dressing him and posing him for the picture. Colton says Hi Everyone!

Doing Better

Colton is doing better today so far than yesterday. He made some good steps last night and is completely off the Lasix now again and still peeing. He is still on Dopamine for his blood pressure but they have weaned down more than 1/2 of where they started. He is still doing relatively well on his vent settings.

Donny went to visit last night and found out that Colton has grown (finally) and is now 3 lbs. 5 oz. So we are making small strides there. The big goal now is to fatten that boy up! They have started giving him another calorie fortifier which so far he is tolerating. They still don't have him back up to full feed volume but it is important to make sure he can handle the fortifier first.

We'll update again soon!

Mr. Colton's Wild Ride

Is back. I mentioned that we had some small bouts of no peeing but he decided to really kick up his heels and stopped for about 12 hours yesterday. This was followed by the doctors having to throw everything but the kitchen sink in again. Colton had to get high doses of Dopamine both for his kidney profusion and blood pressure. He was having low blood pressure last night. He also required a blood transfusion and was put back on the dreaded Lasix drip. The cherry on top of the sundae is that in the middle of all this he also started having feeding intolerance so they had to drastically reduce his milk intake.

Good news is, he started peeing...a lot. So he is getting rid of all the fluids and did fare pretty well on his vent through all of this. We just have the long and windy road ahead now of weaning back off all these drugs that took so long to get off of in the first place. Oh and poor little baby had to get two IV's in his head last night for all the drugs...maybe he should be Rudolph the Red Nose Reindeer for Halloween? He's already got the antlers covered. OK, I needed some humor here people. :)

More of the Same

I looked at the blog and realized that it has been several days since we posted. Colton is doing well, just more of the same. We've had a couple of small no pee pee episodes but they seem to be well controlled with doses of medication now. The doctors and nurses have been focused on weaning him off the vent. He is fighting it but they are able to make small steps. He had lots of visitors this weekend. He saw his Aunt and Uncle, and Grandma and Grandpa Schaefer were in town as well as our good friends the Tans from San Diego.

Thanks to everyone who donated, walked and supported us for the CHOC Walk this weekend. It was wonderful and fun and inspiring. Thanks to Grandma Mary who came and handed out homemade cookies and to our wonderful team who woke up so early that morning to walk. Colton, Donny and I appreciate all the support! Here are some pics: http://www.flickr.com/photos/29664626@N07/sets/72157608260575491

No News is Good News

Just wanted to give a quick update on the little man. Not much to report this week. I (mommy) have come down with a bit of a cold so I've not been able to go in the last couple of days to see Colton. But from what Donny tells me and the nurses on the phone he is doing very well. They are still playing see saw with the ventilator where they wean a bit and he doesn't like it so they go back up. One of these days he'll allow it. They are still giving him a therapeutic dose of the Decadron for his lungs. We had a small bout with no pee pee yesterday but he has caught back up now. He's still eating, up to 21 cc's now. Had another eye exam and the results still show he has an immature eye (lol). Overall (or clinically as they say) Colton is doing well and really just feeding and growing this week with the big goal...getting him off the vent!

Can't wait to see many of you at the CHOC Walk this weekend. Thanks to all who are walking and thanks to all who supported us by sponsoring! It has been amazing to see your love and generosity.

Eating, Sleeping. Pooping (and peeing)

Calm on the Colton front. He's eating, sleeping, pooping and still peeing. We had a speed bump in the feeding area where he stopped tolerating the extra calories they were adding to his breast milk. So after stopping feeds for 12 hours, they let him go back to breast milk (straight up) without the calorie fortifier. This means he'll gain weight more slowly since he is getting only half the calories they want him to. Other than that, the big focus is weaning off the vent. They have made some baby steps in that direction. His chest x-rays are looking a bit better and we have finished the course of Decadron. My guess is he'll need a second course but we shall see.

In the meantime, more pics for your viewing pleasure:

http://www.flickr.com/photos/29664626@N07/sets/72157607975114472/

Super Cute

New photos of Colton. He's in one of his preemie shirts. :)

http://www.flickr.com/photos/29664626@N07/

3 lbs!

Not much to report today except that I have passed the 3 lb mark! Still doing good on the Decadron and weaning on the ventilator. Still eating and pooping. :)

What A Difference

A day makes. After receiving the Decadron for his lungs last night Colton has had a vast improvement. He is off the oscillating vent and back on the regular one, recieving good blood gasses and still (knock on wood) peeing. He is still feeding for now and they have him on antibiotics as a preventative measure while waiting for the blood cultures to come back. They may have to stop his feeds if he has infection but for now he is still getting his milk shakes. :)

Lungs, Kidneys & Possible Infection...Oh My!

Well we had another doctor meeting today and we have some good news and some not so good news. Colton is doing better on his kidneys. As of time of this post he is still off of the Lasix and still peeing. It seems as though he is on a good path and we might be seeing a little bit of maturity coming out of them.

On the not so good side, Colton hasn't been maintaining a high enough temperature today. They don't know if it is because they were in his isolette so much or if he truly has a low temp. Apparently preemies can show signs of infection from both a fever or a low temp. So they did an infection screen today and we'll see what comes back from that. Also, in the doctor meeting they let us know that Colton's lungs are looking sick. Now that he is making enough urine to get rid of the fluid in his body, his lungs should be clearing up and they are not, they are getting more wet. The doctors explained that because he has had so many episodes from the kidneys that the lungs are now paying the price. They are going to try a type of steroid on him to see if that will clear up his lungs. He is still on the oscillating vent and is on really high settings meaning he is needing a lot of support. :( Hopefully the drugs will work in the next few days and we'll see some difference.

CHOC Walk Update: For those of you that are participating in the CHOC Walk, you need to pick up your wristband prior to the day of the walk. Please go to http://www.chocwalk.org/pages.cfm?id=81 to see the different locations. They have a check-in this Friday the 10th at the Shops at Mission Viejo from 2:30pm until 8:30 pm which I will go to. If you would like me to pick up your wristband and info, please email me at amy.c@cox.net before Friday and provide me with your Registrant ID and password. I'm not sure that I can do this, but will see if they will let me pick up for other people. :)

The Dance is now a Jig

Things are moving at a slightly faster pace I now like to call the pee pee jig. :) Since we last posted Colton has been on and off of the lasix twice and on and off the oscillating ventilator twice. He pees a lot and then stops. The doctors chase his kidneys and then he over-pees. They pull back on the meds and he stops peeing. I actually had a doctor tell me today that they have never ever seen a baby so dependent on lasix. Oh my little boy is giving everyone a challenge already! As of the time of this post he is peeing well but still on the oscillating ventilator. He is off the lasix (for now).

On a more positive note, he is doing well on his feeds and is up to 1/2 oz. every 3 hours. And he weighs 2 lbs. 14.5 oz. Almost 3 lbs!

The Great Pee Pee Experiment is Over

Well, we knew the other shoe might drop and it did last night, kind of. The big pee pee experiment failed. They stopped the Lasix completely as of yesterday at 2pm and gave him extra Saline. Colton stopped peeing (surprise) and the extra fluid in his body went straight to his lungs. This caused his blood gasses to get really high. They tried bagging him to get the gasses down but ultimately had to put him back on the oscillating ventilator. We are hoping that this is a temporary measure until his blood gasses are back in normal range. They re-ordered the Lasix to make him start peeing. So, as the doctors say, we are chasing the kidneys. Its disheartening to take such big steps backwards but its what's best for Colton.

Start doing the pee pee dance again...

For our friend Donna, who's son Nicholas is in the hospital being treated for Leukemia, say some prayers also. He is getting some major news on his progress today. Donna....here is a photo for you!

Bake Sale

Just a quick entry from Mommy that if you live in our area and have a sweet tooth, come out to our bake sale this Saturday! We are going to be at the soccer fields next to Wagsdale Park (the dog park) starting at 8am. All net proceeds will go to sponsor our CHOC Walk team. Tell everyone you know!

From Crown Valley and the 5, turn right on O'Neil, make a left at the Cecil Pasture light into Wagsdale Park parking lot. Follow all the people. :)

Mini-Graduation

Today was a really busy day for me. Mommy came to visit around 10:30 this morning and met with my developmental nurse. She showed mommy what excercises she could do with me to help my leg and hips develop properly. It will also help with my stiffness, which has gotten much better but is still there a little bit.

Mommy got to kangaroo with me today which was really nice and while she was holding me they switched my bed! I had a mini-graduation into a new isolette. They needed my special isolette for a sicker baby and they say that I am ready for the next step. Yay me!

They are trying a new expirament with my pee pee meds. They are giving me more of the Bumex (sp?) and seeing if that will allow me to get off of the Lasix drip. Mommy and daddy are hoping that this doesn't mean that I'm going to stop peeing, but we shall see.