12/12/06: Day 151 (Tues.) Doctor Visit!

Evan had a follow-up appointment at the Children's Multi-Specialty Clinic in Tucson. We thought we would be seeing Dr. Morgan, but it was a different doctor (I think it was Dr. Brown). Our appointment was at 8:30am and we hoped we wouldn't have to wait as long as we did at the last appointment.

The nurse called us back to do his stats...he weighed 10 pounds 5 ounces; was 22 inches long; and his head circumference was 39 cm. I plotted his latest stats on that image, so you can click on it to see a bigger view. He's still just below average, but that's o.k.!

The doctor suggested we increase his amount to 4 ounces every feeding. He's been taking about 3 ounces every time. We have to get him to about 28+ ounces a day in order to plump him up more.

The nurse came in with the "magic" pulse oximeter. Of course Evan maxed out on the pulse ox while on the oxygen. Now, the moment of truth...we turned off the oxygen flow. He did great! He averaged about 96-97%. That was a big improvement from two months ago when he was averaging the low 90s.

We were hoping to hear the great news that he could come off the oxygen...um...didn't happen. At least we can stop the Lasix in two weeks. The doctor didn't want to make too many changes at once since he's wanting us to increase the amount of his feeds. When he comes off the Lasix, we have to watch for any major changes in his breathing. While he's sleeping, we have to do periodic respiration counts to make sure he's not laboring harder to breathe. He should be breathing between 30-40 respirations per minute. If he is breathing more rapidly, it's a sign that there may be moisture build-up in his lungs and we have to start the Lasix again.

We have to come back (again) for follow-up in about 5 weeks. The doctor anticipates that he will get the green light to stop the oxygen. The next time we take him to see Dr. Ettinger, we need to get a pulse oximeter reading on him to see what his true oxygen saturation is at our altitude.

So, we continue with the oxygen! Bummer!

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**Weight Check: 10 lbs. 5 oz.
**Height check: 22 inches
Chronological age: 21 weeks and 4 days
Adjusted/developmental age: 2 months, 3 weeks and 5 days
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8/20/06: Day 37 (Sun.) Adventures in Diaper Changing

All of you who have kids (especially boys), I give you permission to laugh when you read this. T and I got to experience being peed on twice during diaper changes! What is with little boys??!! During Evan's 6pm feeing, I was holding him and we heard a big rumble down in his diaper area. I feared the worst since my hand was in that area holding him and I could feel it too. We thought that maybe we would just leave it for the nurses, but we were nice and decided to change his diaper after the feeding. It wasn't a total blow-out, but close. Alas, that won't be the last time we deal with that!

So, enough of the bodily function issues...everything is continuing on track. The nurses have been turning down his oxygen flow as he tolerates it. They knocked him down to .30 oxygen flow (but they move it back up when it's time to change his diaper and change the dressing on his foot). He tends to get worked up during those times and his O2 levels drop a lot. But, that's o.k. that he needs a bit more during those times.

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UMC Charges: $3,800.00
Running Total: $300,121.44
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8/13/06: Day 30 (Sun.) Off the CPAP!*

O.k....what is missing in this picture?! The CPAP! Our little guy has now progressed onto the nasal cannula! We have yet to get a good view of this kid without something on his face, but it's getting better.

We took a handful of videos since we were trying to get a good shot of Evan with his eyes open. He's still elusive, but we did get a few shots. The side of the NICU he is on always seems to have lights on and he's really sensitive to lights. We were joking about bringing him in little sunglasses. When he is laying in his crib, they do put that hood-thing over his head that helps to shield his eyes.

Medically, he is doing great with the cannula. His O2 and respiration levels are perfect. As his breathing continues to improve, they will decrease the amount of oxygen coming through the cannula to the point where he won't need it anymore. They have reduced his respiratory therapy sessions to every 6 hours instead of every 4 hours. He still gets a treatment of albuterol and now that he is off the CPAP, he gets it just through a nebulizer instead of a mask. He barely fusses now when they tap on his back to loosen all the crud. His nurse hasn't had to suction him as much as they had to in the past few days, so that's more signs of him healing.

In a post many days ago, I had mentioned about he had an abnormal result on a genetic screen. The resident doctor told me today they retested him and he came back with results in the normal range. So, the initial test was a fluke due to the blood transfusion right before they tested him. The doctor also told us he did have a bowel movement last night. Not exciting news for you all to read, but it's a sign his digestive tract is starting to work. They have also increased his feeds since he has been tolerating the milk.

We both held Evan for a while today during our visit and he didn't fuss much at all. Enjoy the vids.

Yeah! Evan without the CPAP!




In this video Evan got his dinner:



In this video, Evan gave us a little cough:



In this video, you can see him open his eyes a bit:



Evan was trying to sleep in this vid. The voice you hear in the backgroud is the nurse who takes care of a baby across the way. Her voice starts to grate on your nerves after a while. I think you can hear her in every video.



He opens his eyes a little again in this video.



In this video Evan has mastered the art of brow-furrowing. It usually proceeds a spell where he will turn himself bright red and try to give out a cry. He was pretty mellow this time around.



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UMC Charges: $5,603.95
Running Total: $270,400.39
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8/8/06: Day 25 (Tues.) Crazy Storm Night*

Not a whole lot of news to report...Evan is still doing well on the CPAP. Tonight they are moving him over into pod 3 (he was in pod 1 which is for the babies who need a lot of care). He'll have a window spot (how nice)...not sure if we have to pay extra for the window view! ;-) I got to hold him for almost the whole time we were there. T has some video footage, but he hasn't downloaded yet. I'll post it as soon as I get it.

We've learned that when Evan is held, he likes to be on his side and wrapped up like a burrito. Initially, I was holding him on his back and loose in a blanket. He kept getting super-mad (so much that he turns himself purple) and when he did that, he scrunched up his nose which unseated the CPAP on his nose. That in turn makes his O2 saturation drop and the monitors start going off. After wrapping him up and turning him on his side, he was a calm guy. He wasn't bubbling as much today even though his nurse said he still has a lot of crud coming up from his lungs. She had a little pacifier in his mouth (they use them a lot on preemies to get them used to the sucking sensation) and that seemed to calm him also.

For those of you reading this in the southern-Arizona region...you may have seen on the news about the crazy thunderstorms that blew through Tucson this evening. Guess who was driving home when they hit?! That was one of the worst storms I had ever seen. Visability was so bad that we pulled off into that park at the south end of Campbell/Kino Parkway along with a lot of other drivers. We had to hang out there for a while until the rain let up. We had rain off and on the whole drive home (not fun). Hopefully, better weather tomorrow in Tucson!



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UMC Charges: $6,784.10
Running Total: $238,201.04
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8/3/06: Day 20 (Thurs.) The Snot-Man

A rainy day up in Tucson today...luckily I got to the hospital before the downpour. It was neat though since we could watch the rain roll in from Mt. Lemmon from one of the NICU windows.

I had a good visit today (not like I ever have a bad visit)...Evan was lucky to have 2 nurses work with him today. Today Marianne was off so he had Karen and Mary. Karen is a nurse at St. Joe's Hospital on the other side of town and was called in to UMC since they had so many babies to take care of. Karen was a real hoot, someone who had a great sense of humor despite all the stress in the NICU. Small world, but she has relatives who live in Hereford and Bisbee, so she's well aware of the boring drive to Sierra Vista from Tucson.

Evan did have a head ultrasound and chest x-ray today, but they didn't get the results interpreted yet. I'll check tomorrow on those results. His right arm was still free from the art line...they are taking blood samples from his left heel instead. Now that his right arm is free, I noticed his upper arm is really chunky! He still tends to keep his arm in an upright position (he doesn't seem to know that he can put that arm straight down now).

Evan's oxygen saturation all of sudden dropped into the 70's...as it turns out, he needed to be suctioned. Karen squirted a bit of saline solution into the suction tube and ended up pulling out a big glob of snot (as she called it). Sorry for the lack of a better medical term! It was amazing to see his O2 levels go right back to normal after she did it. The nurses have been rotating him from his belly to his back and have been noticing a lot more gunk coming up from his lungs (according to them, that's not a bad thing). The oscillating respirator also shakes a lot of the stuff loose. Since he can't cough it up due to the respirator tube, it has to be suctioned out manually.

While I was there, the respiratory technician (RT) made some adjustments to his ventilator. The nurses were about to test his blood gases when the RT appeared, but they decided to wait about a half hour, then pull his blood sample to see how the adjustments affected his results. I was still around when they got the results back from the lab and according to Karen his results were excellent....so they expected the RT to come back and make some more adjustments. So, more positive steps to get Evan onto the conventional respirator (and eventually off it entirely).

I got to change his diaper again...according to Karen, that was the heaviest diaper he has had (it was absolutely soaked). He was acting really fussy prior to the diaper change, so he definitely doesn't like to be wet, even in his sleep stage. The nurses also let me "feed" him through the tube...he's now getting 2ml every 6 hours, which is a step forward.

Evan seems to be having less and less IV drips running...so that's another good sign. All he is getting now through the IV is Fentanyl, Adivan and TPN (which stands for total parenteral nutrition). Once he gets off the respirator, he should be IV free (as long as he can tolerate the breast milk feeds). Fingers crossed we'll get to that point soon!

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UMC Charges: $7,002.30
Running Total: $200,569.79
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7/18/06: Day 4 (Tues.) Pulmonary Hemorrhage*

I think I may be off on my day numbering, so bear with me. :-) Wow, amazing how things can change from day to day. All part of being a preemie. Today our little guy was not a happy camper.

I had called earlier in the morning for a check on how he did through the night. He was moved into an incubator (which is actually a good thing), but his blood platelet counts were down and they had to give him a bit more blood. They are trying to wean him off sedation to see how he manages, so all this could have played a role in the distress he had today.

By the time we got there, he went into a little bit of respiratory distress. They found a bit of blood in his lungs and took an x-ray. His lung x-ray came back white (which meant his lungs were a mess). His CO2 readings went sky high (meaning he couldn't blow-off his CO2). The attending doctor and numerous nurses all were working on him to get him back to reasonable levels. His other vital signs were rock-steady, so the nurses and doctor were not in any panic mode.

They took him off the respirator to see what he would do (hoping he would be happy with that), but he didn't do well and they had to intibate him again (not fun). They put him on a different type of respirator, one that breathes 500 times a minute for him so that was finally bringing his CO2 levels back down (he was at 90+ and normal is around 50). They gave him some demerol and were ordering some more sedation to mellow him out and let this other respirator heal him. They plan on doing another x-ray tomorrow morning, so hopefully they'll see clear lungs.

All we could do today was stand back and watch, we didn't even get to touch him. Not sure if we are driving up tomorrow, but I will post an update from the nurses as I get them.



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Chronological age: 0 months 0 weeks 4 days
Adjusted/Gestastional age: 31 3/7 weeks
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UMC Charges: $10,499.60
Running Total: $75,580.79
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7/17/06: Day 3 (Mon.) First Visit*

We drove up to UMC on Monday to see our little guy...not sure what we were in for. I was scared to go in, but everything was just fine. Evan is right on track for a preemie his age, sort of a "textbook" case so to speak. We got to talk to the doctor who was in the NICU at the time (Dr. Wispe)and he gave us a lot of reassuring information. He still thinks he won't be home until his expected due date, but he hopes that if he reacts very well to his treatment, he could be transferred back to the Sierra Vista Hospital to be taken care of there (but we're still talking a long ways down the road).

He has a nurse dedicated to taking care of him (well, there are more than one, but we met the one taking care of him during the day shift). The nurses are more than happy to get us educated on what all the monitors and tubes are for. We had a lot of information overload yesterday we're still trying to digest. But basically the steps are for him to come off the respirator later this week...then he'll go on the CPAP (to force pressured air into his lungs), and then just to the nasal cannula (with just continuous oxygen). We we're with him before and after lunch, and even in that time, they dropped his oxygen down from 28% to 26%, which is a good sign.

He is still a bit sedated since he was fussy Sunday night. They would rather have him sleep and let the respirator do the healing than him fighting it. His legs are looking so much better. They put a different IV line in his body so they don't have to draw blood samples from his feet. Funny, his blood is A+ just like both his mom and dad! He is under the "bili-light" to get the jaundice out of his system. The nurse told us we could be holding him if it wasn't for the bililight....they need to get his sytem cleared out first.

We did finally get his birth length...this kid is 41 cm which is about 16 1/4 inches long. If he would have been a full-term baby, we would have had some issues!! Even his nurse thought he was an older baby. So many things are going in his favor. His weight is still the same (which is to be expected).

So, we'll be going back up today...they are hoping to get him on a feeding line (through his nose directly into his stomach) in a day or so. Currently, he has a feeding line directly into his umbilical cord. They'll be able to start using breastmilk down that feeding tube, so hopefully that will give him a good jolt of nutrients.

I'll post more later! Thanks for all the supportive e-mails. It's hard to get back to everyone, but you pretty much know, no news is good news from us. We're managing well, so don't worry about us. Since we can't hold him yet, there's no rush for us to be there 24/7; so T's still doing some hours at work and we'll go up in the afternoon. I get to chill with the pups in the morning, which they like. I'm recovering really quickly from the surgery, ...the cankles have arrived people!!

P.S....The photo is a bit overexposed due to the bililight.



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Chronological age: 0 months 0 weeks 4 days
Gestastional age: 31 2/7 weeks
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UMC Charges (7/15): $11,187.90
UMC Charges (7/16): $8,541.50
UMC Charges (7/17): $6,414.05
Running total: $66,081.19
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