Timeline

In case you haven't been reading all the postings...this will get you caught up:

August 18 (Day 35): PIC line removed; off the IV; up to full feeds with gavage
August 15 (Day 32): Passed hearing test; had ROP test done
August 13 (Day 30): CPAP removed; put on nasal cannula; classified as Level II care
August 11 (Day 28): T gets to hold Evan for first time
August 9 (Day 26): Got his first bath by mom
August 8 (Day 25): Moved into the 3rd pod
August 7 (day 24): Respirator removed; put on nasal CPAP; held by Jen for the first time; moved into a crib
August 5 (Day 22): Oscillating respirator removed, put on conventional respirator
August 2 (Day 19): Arterial line removed
July 31 (Day 17): PDA healed
July 28 (Day 14): PDA discovered
July 25 (Day 11): Off the bilights; bi-carb burn on his right foot discovered; Jen's first diaper change
July 23 (day 9): PIC line inserted
July 21 (Day 7): mild IVH grades detected in brain
July 18 (Day 4): Pulmonary hemmorhage detected; put on ocillating respirator
July 14 (Day 1): Born by emergency c-section in Sierra Vista Hospital and air-evac'ed to University Medical Center in Tucson

8/17/06 & 8/18/06, 2006: Day 34 & 35 (Thurs. & Fri.) 5 Weeks Old!

Apologies for not posting last night, I was just exhausted from being in Tucson almost all day. I have been trying to be at the hospital as much as possible during the day before I have to go back to work at the end of next week. I'll take time off again when Evan comes home. The only bummer is that T hasn't been able to be at the hospital the past three days since I'm there during the work day.

Evan has already reached full feeds (they are still increasing 1ml every feed), so I am happy to report that Evan is off the IV! Another surprise is that they took out his PIC line also, so his left arm is now free! The only wires left are the ones attached to monitor his heart rate, breathing rate and oxygen saturation. Of those three, the one they are watching the most is the O2 saturation. They have periodically tried to turn down his oxygen flow, but he still isn't tolerating very well. His O2 levels will start to drop into the 80s and lower. At this point, it's nothing to worry about, it just shows his lungs are still growing, so they aren't in any rush to push him.

Evan got a bath today, which was a bit easier since his PIC line was removed. It turned into a three-person job. We had to wrap his burn foot in plastic to make sure it didn't get wet and one person had to hold his foot out of the tub. His burn is healing very well according to the nurses. The black part of it has fallen off and the new tissue growth looks very healthy. So, chances are, he won't have a scar that is too noticeable. Now that he is IV free, we can put him in baby clothes like onesies, so he's starting to look like a normal baby.

Evan is becoming more vocal around feeding time, which is showing he is more aware of hunger feelings. He was so mad and fussy, but as soon as the milk started going through the gavage, he was super-calm. A few days ago, his O2 levels would also drop after he would be fed, but now, his levels are steady during and after feeding (in the upper 90's).

5-Week weight check: 2295 grams = about 5 lbs. 2 oz.

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UMC Charges (8/17): $4,074.85
UMC Charges (8/18): $4,000.00
Running Total: $292,321.44
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Some new pics

The pictures still look bad through the incubator glass. I had to get a shot of this....Evan loves to cross his feet. On his right foot, Marianne made a little sock to cover his burn wound. He would keep kicking the dressing off with his left foot. Now with the sock, he can't do that. You can see his right arm is free from the arterial line, but he still keeps his arm in position like it's still on. His left arm has the PIC line in it. This is the view we see of Evan most of the time since the respirator tube is on the opposite side. We know the back of his head very well!


In this shot I was trying to get a picture of Evan with his "guard dog", Sarge. Sarge keeps an eye on him when we can't be there.







I was trying to get a full-length picture of Evan on his respirator side. As you can see, he's not as wired up now as he was before. That tube in the forefront is the suction tube they use in his mouth. The suction tube they use for his lungs is in front of his left hand. Evan loves to have his hand resting on the respirator tube.

8/1/06: Day 18 (Tues.) PIC Line Adjustment

If only there was a way to put the car on auto-pilot for that drive to Tucson! I have co-workers who do the drive every day and I don't know how they stay sane!

So, the visit was good, no major improvements from his condition yesterday. He was much more calm than yesterday when I got there, so I didn't do much but watch him through the incubator. I didn't want to take the chance of getting him fussy.

The one odd thing the nurse told me was earlier in the day his heart rate kept dipping lower thasn usual (below 100 and then it would jump into the 140s). They thought maybe it had to do with that PIC line; that maybe it slipped in too far and was tickling a part of his heart. They x-rayed him and I think they did adjust the line a bit.

He is still on the course of steroids for the next few days, so I don't think we'll know if they helped until the weekend. They only check his blood gases every 12 hours, so that is a good thing, showing his levels are getting normal. He is still getting minute doses of breast milk every 8 hours, so he was due for a "feeding" at 9pm last night.

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UMC Charges: $7,302.60
Running Total: $186,829.49
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7/29/06: Day 15 (Sat.) PDA Treatment Started

Although Evan celebrated his 2-week birthday yesterday, he is 33 weeks (adjusted gestational age) as of today...so getting closer to that 40-week full-term target age. We had a good talk with his resident (Andrea) today, but were bummed to hear she will be shifting over to TMC in a week or so. The residents switch locations every 30 days. She assured us the resident taking her place will be fully informed of Evan's condition.

Evan was even more fidgety today than we had seen him in the past. The nurse thinks that he's reached that tolerance point for the Fentanyl and is starting to feel things a bit more. They bumped up his dosage to get him to settle down a bit more. They also took an upper-body x-ray to make sure his PIC line is in the correct location after his nurse noticed that when she touched the area on his arm where the PIC line is, he became more agitated. The x-ray came back with no indication that his line was out of place, so he was just not a happy guy today! He kept opening his mouth wide like he was trying to yawn (or trying to get that respirator tube out).

They started him on the medication to help close his PDA problem. He'll get that medication over the course of three days. We'll know more on Tuesday when they do an ultrasound on his chest. The ultrasound will be able to tell if the medication worked or if he has to have the PDA ligation surgery. He did get a little blood transfusion today since his platelet counts were down a bit. Although he's A+ like both T and I are, he gets O- blood during the transfusion.

We had a good long visit with him today. I got to take his temperature and change his diaper again. Most of the time T and I had our hands on him trying to get him to settle down, but it didn't work too well. Hopefully tomorrow we can get an updated picture of him to post. :-)

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UMc Charges: $7,680.65
Running Total: $163,010.09
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7/24/06: Day 10 (Mon.) PIC Line Moved

Another non-drama day (yea)! I did forget to mention in the previous post that Evan gained a bit of weight (even though they think it's due to water retention). As of Sunday he weighed 4 pounds, 2 ounces (up from 3 lbs. 8 oz. when he was born). Weight has never been an issue with him since he was a decent size for his age to begin with, but it's good to see the numbers go up. When we were there on Monday, T and I were commenting on how much bigger he is looking (especially his feet). Evan has a "neighbor" who is one of a set of twin boys who are 26 weeks old and weigh a little over 2 pounds, so he's the big kid on the block!

Not sure if I mentioned before, they had to move his PIC line from his foot to his left hand, so now his feet are totally free of catheters and lines. But, both his hands are pretty much bundled up since they use his right hand to draw blood and the left hand for the PIC line. Almost every time we see him, he always has his hand on the respirator tube, so he must be feeling the sensation from it. They think his lung issue has cleared up since when they suction his lungs, they have been clear (aside from a little bit of pink tinge which they aren't too worried about). His right foot did get some sort of burn on it that they are healing with this blue gel-like stuff. He's still on the bililights, hopefully it will clear out his system this time.


One thing I have to complain about though...on Sunday, I drove the Trailblazer to the hospital...someone stole my Steeler antenna ball!! Oh, the humanity!! Can you believe!? I noticed he was gone when I was driving home... Bummer! We have found that entering and exiting the UMC parking garage is a lesson in defensive driving since no one watches where they are going.

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UMC Charges: $7,561.25
Running Total: $124,633.29
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7/22/06 & 7/23/06: Days 8 & 9 (Sat. & Sun.) Still Working on His Tan

Two days with little to write about (and that's a good thing). The little guy is back under the bililights...I think he's just working on a tan! They saw his bilirubin counts go up again and thought it was best to get him back under the lights. The yellow-ness looks to me to be mostly in his legs.

They removed the two UVC and UAC lines going into his umbilical cord. I think they both could only stay in for about a week anyway (due to potential clotting). Now he has a line going into his foot instead that is doing the job of those two lines (called a PIC line...Percutaneous Intravenous Catheter). So now he's not looking so wired-up. The PIC line can be used for several kinds of injections and infusions so he doesn't have to be poked so many times.


Today his nurse said they took an abdominal x-ray since she had felt a hardness in his groin/leg area. It turned out to be a minor thing...the PIC line they put in his foot needed to be adjusted since it was causing the edema in that area. It's a common thing from what they tell me.

His blood platelet counts have been steady, so they haven't had to infuse him. He's also tolerating breast milk down his feeding tube. He gets that every three hours. They are increasing the amounts every day to see how much he can tolerate. They plan on feeding him 30ml every day, which is a pretty good amount.

He is still on the oscillating respirator and his CO2 level is looking good (they fluctuate in between the 40s and 50s). I think earlier I posted his CO2 levels should be in the teens, but that number is wrong...the nurse told me his CO2 monitor was probably not on tight and had room air slipping under it, causing the reading to be so low.

That's it for this weekend...we'll be driving up tomorrow after work.

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UMC Charges (7/22): $6,832.35
UMC Charges (7/23): $7,956.65
Running Total: $117,072.04
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