8/31/06: Day 48 (Thurs.) Eating and Growing

A new schedule to get used to now that Evan is down here in Sierra Vista. Thank goodness we live near the hospital and it's on the way to work for us. Since the nursery doesn't have a lot of freezer space, I have to bring in a few bottles every day instead a large bulk amount at UMC. They are fortifying the milk to help him gain weight a bit faster. I think I heard them say he weighs 5lbs. 9oz. now, but I'll check on that.

It is funny since to us Evan looks like he's gotten so much bigger, but now that he is beside full-term babies, he still looks so small! The nurses were nice enough to do his feet prints since the prints we had were done very hastily and looked messy. Comparing the earlier feet prints, he has definitely grown. His feet were about 2 inches long at birth, and now they are over 2.5 inches long.

His O2 levels have been steady, so no change to his level. His nasal cannula was half hanging out since the tape holding it on needed replaced. During our evening visit, we asked the nurse (Chrissy) to retape it and it now looks much better. The tape was falling off the past 2 days and we thought someone would take the intiative to change it (um, that didn't happen). Chrissy also suctioned his nose (which we don't think the day shift nurses are doing), and got some nice snot out that was bothering him. He's still eating well, about 60ml/2oz every feeding. They are letting him wake up on his own when he is hungry, but they won't let him go more than 3-4 hours without eating.

If you can tell by my post, I am slightly disappointed in the care Evan is getting in comparision to UMC. Of course it's like comparing apples and oranges to compare the two hospitals. But at UMC, the nurses would make sure his clothes were changed and his bed linens were changed out. I've found that if we don't do it during a visit, it doesn't get done. The nurses also don't practice good inside voices while in the nursery (they talk so loudly all the time). They usually leave the overhead lights on, so tonight we turned one of his fleece blankets into a makeshift tent to cover his face from the light. He's due for a bath tomrrow, so we'll see if the nurses will do it without being reminded.

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SVRHC Charges: $1,822.91
Running Total: $331,790.94
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8/30/06: Day 47 (Wed.) Acclimating nicely

Evan's first full day in Sierra Vista went well. He is doing really well acclimating to the altitude here. His oxygen has been bumped down to .4...so that is great for just the past 24-hours. Dr. Ettinger, his pediatrician, was in the nursery since he was delivering twins today, and he touched base with me about his progress. He said that he's not going to push him by lowering his oxygen, but just let Evan work it out. He is estimating even when Evan comes off the oxygen, he'll still be in the nursery for about a week after that. So, I guess we're going to be there for a while. His other concern is that Evan is steadily gaining weight. Last night he was 5 lbs. 6 oz. so that doesn't seem to be a problem for him. He's been eating like champ, so no doubt his weight will jump.

It's quite a change going from the UMC NICU to the SV Hospital! One of the night shift nurses we met tonight used to work in the NICU of a women's hospital in San Diego, so she is very aware of Evan's needs. The SV nurses were afraid Evan would be disturbed by the noises in the nursery, but even that nurse agreed that the environment Evan was in the past few weeks has made him immune to a lot of noise. He has a little corner to himself; all he has is his oxygen line and his leads for monitoring heart rate, breathing and O2 saturation.

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SVRHC Charges: $1838.22
Running Total: $329,968.03
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8/29/06: Day 46 (Tues.) Settling down in Sierra Vista

The little guy finally made it to the Sierra Vista Hospital around 5:30pm. Ironic that the UMC nurse (Marnae) who was with him on his helicopter flight was the same nurse on his ambulance ride. It was nice to see her familiar face while he was being settled in to the nursery. She said he slept the whole time, so he was no trouble.

The SV nursery was a little hectic...intially, they weren't going to accept him today since they were anticipating a lot of deliveries. Dr. Tsai from UMC called earlier in the day and said they were pushing for the transfer and she was making some calls to the higher-ups at SV. I got the call around 4pm that they were enroute.

Evan has his own little room in the nursery with a sliding door, so it keeps out a bit of the noise. I don't think noise bothers him all that much since he's been exposed to it since birth in the NICU. The nurse was going to switch him into a crib from the open warming table, so he'll be sleeping in something similar to what he was up at UMC. His pediatrician (Dr. Ettinger) said there may be another baby moved into the other spot in his room.

They have his oxygen level on .7 to see where he is in the higher altitude....he was doing well (maxing out at over 100% some times), but then other times when he was upset, his levels would drop. Their sensor is a bit different, so it would cut in and out sometimes. They had the alarm set to go off whenever he went below 88%, so you can imagine, it went on and off a lot.

So, I'm trying to learn the routine with the new hospital. This is a big change from UMC but a big step in getting him home. His room is right by the door into the delivery room OR, so no doubt, we'll be seeing a lot of babies come and go!

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UMC Charges: $320.50
AirEvac Charges: $2,300.00
Southwest Ambulance Charges: $1,572.78
SVRHC Charges: $1,434.74
Running Total: $328,129.81
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8/28/06: Day 45 (Mon.) A BIG change of location...

I've mentioned in previous posts that Evan has moved around from pod to pod at UMC due to his condition improving. Now, for another move, but this one is a big one...he's transferring to Sierra Vista Regional Health Center tomorrow!

I got the call today at work asking for our permission to transfer him. According to the call, he was going to be transferred today, but then a later call changed that plan to Tuesday. He needs to have another eye test before he can be transferred (not sure if that is a requirement from UMC or SVRHC). He will be transported by ambulance (thank goodness no more $16,000 helicopter rides)!

We are so happy to not have to do that Tucson drive almost every day! I will post more info tomorrow after he arrives!

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UMC Charges: $3,180.35
Running Total: $322,501.79
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8/27/06: Day 44 (Sun.) Could Our Days Be Numbered?

Great news to hear today...rumor is that the doctors were talking about making a decision tomorrow about keeping Evan at UMC or transferring him to the Sierra Vista Hospital. Since he is still on a relatively high amount of oxygen (.50), I don't think he'll be completely discharged for a little while longer. The doctors asked Marianne to turn down his oxygen to .125 (which is a very low flow amount) to see how he would react. He reacted as expected, his O2 saturation levels dropped quickly (into the 70's). Even at .40 he has lower than acceptable O2 levels, so Marianne knew there was no way he would tolerate .125. So, the little guy remains at .5 for now.

For those of you who don't want to read about poop, please skip this section:

I hit another milestone today...so far we've done the first diaper change, holding him for the first time, bathing him for the first time, feeding him for the first time, getting pee'd on for the first time...now, the ultimate milestone...I got pooped on for the first time! While feeding him prior to shift-change, I knew there was a party going on in his diaper. I didn't think it was going to be too bad and had planned on changing his diaper once he was done with his bottle. As I was shifting him from one arm to the other, there it was, the up-the-back and out-the-diaper mega poo. He managed to leak it so bad it was on my shirt, my shorts and on the cover for my Boppy pillow. Prior to the incident, I had changed him into a cute onesie, but alas, it is now soaking in cold water. Of course this all happens right before shift-change when parents have to leave until the next shift comes on at 7:45pm. Marianne and I tag-teamed the clean up and Evan was all snugged in his new outfit and new blanket in no time.

If it is true we'll be transferring out of UMC, it will be bittersweet since Evan's primary nurse, Marianne will be on vacation for about a week. She won't get to see us go. :-(

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UMC Charges: $2,800.00
Running Total: $319,321.44
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8/26/06: Day 43 (Sat.) I Eat When I Wanna Eat!*

I hope you all get a laugh at the posted picture. When Evan is sleeping, he'll "pose" in different positions and we thought this one had the look of "my life is so tough". We have a couple of vids posted below also.

I had to laugh at the automatic e-mail I received from Babycenter. I think I mentioned before that I subscribe to the site and when you input your due date, it sends you e-mails each week with development info about the baby. The e-mail I received today said:

Only three weeks to go! Your pregnancy is now considered full-term and your baby probably weighs a little over 6 pounds and is a tad over 19 inches long. Worried your water will break in public? This statistic may ease your fears: Spontaneous rupture of membranes before labor happens in only 15 percent of pregnancies.

I am so happy to know I am part of that 15 percent! As far as the other statistics, our guy is steadily gaining weight (he's at 5 lbs. 5 oz.) and he is 44cm long (which is about 17 1/3 inches).

Evan is still doing super-great on his bottle feeds. He's now classified as a baby who can eat whenever he is hungry. So, he's off the scheduled 9-12-3-6 o'clock feedings. When we were there today, he b-fed for 12 minutes, which is a record so far for him. The nurse took out his feeding tube since he isn't needing it anymore (and it was getting cruddy). They also decided to stop putting the dressing on his foot for the bi-carb burn.

Evan got a bath today









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UMC Charges: $2,800.00
Running Total: $316,521.44
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8/25/06: Day 42 (Fri.) 6 Weeks Old! Bottle Feeding Begins

Wow, six weeks now! It still seems like a year until he comes home. Today, they started bottle-feeding him and he took right to it. The nurse said at his noon and 3pm feedings he downed the bottles like an old pro. When I fed him his bottles at his 6pm and 9pm feedings, he finished all but about 19ml both times. The nurses would get him to finish it later. That was the first time ever bottle-feeding, so I'm not sure if I have the technique right.

Evan's crib was snatched for another baby, so he's now in a small bassinet. I forgot to bring the camera to get his 6-week photo, so I'll do that tomorrow.

Weight check....the night shift nurse told me he weighs 5 lbs. 5 oz.

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UMC Charges: $2,600.00
Running Total: $313,721.44
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8/24/06: Day 41 (Thurs.) Bottle Feeding Starts Tomorrow

Apologies to those of you blog-addicts for not doing my daily postings! ;-) I was too tired Thursday night to post, so I'm playing catch-up. :-)

Thursday was my last day before going back to work, so I made it up there for his noon feeding and stayed until shift change. This was the last day to really try the b-feeding thing. He still doesn't quite have the knack of it, so starting on Friday, the nurses will bottle-feed him. The goal is to get him either bottle-feeding or b-feeding his full feed (which is about 45ml).

Dr. Tsai told me that once he is consistently doing full feeds (which will be by the bottle since I'm not there to b-feed him), that signals that he can go home. She told me he could go home on oxygen, but I really hope not. He is so fidgety with his cannula, we would constantly worry about him pulling it out and not getting the O2 he needs. So, best case scenario, he gets weaned off the O2 and is bottle-feeding like a champ all at the same time. The doctors know best, so I trust their judgement, they wouldn't discharge him until they are sure he is fine. Since he was on the respirators for so long, they are being extra careful about pushing him too fast.

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UMC Charges: $2,600.00
Running Total: $311,121.44
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8/22/06 & 8/23/06: Day 39 & 40 (Tues. & Wed.) Moving Again*

These days have been blending together...I'm finding it hard to remember what day of the week it is! Counting down these last few days I can spend the majority of the day at the hospital until returning to work.

Evan was moved into the 4th pod due to some nurse scheduling issues. It's a good thing, since he's only with 2 other babies (a twin boy and girl) and that makes it very quiet. The view is even better in that pod since there are windows facing north and west. :-)

I've spent the majority of the time at the hospital just holding the little guy. He is pretty comfy to cuddle with since he sleeps so much. He has been so much more alert during his feedings. They are still playing with the O2 flow into his nasal cannula. When I arrived today, Marianne was happy to report he had been moved down to .20 on the oxygen flow. His O2 saturation was still really high (in the upper 90's), which is way too good. So, Marianne bumped him down to .10, and when she did, the oxygen flow suddenly increased which was really odd. We noticed his O2 saturations levels were still in the upper 90's and that just didn't seem right (he should have dropped a bit). She had one of the respiratory therapists check the low flow meter on the oxygen. The RT ended up switching out the meter for a different one, and with that new low flow meter, he was back up to .50. So, we think that other meter was not working properly. If he truly was down to .10 on the oxygen flow, it would have shown that he was making huge strides in his saturation levels which would be one step closer to coming home. But, were at the point he can't be rushed, it's up to his lungs to keep maturing and doing a better job of absorbing oxygen. He has no problem in breathing on his own, his rates are great, it's just the O2 saturation that is still weak.

This clip shows how active Evan is getting. I couldn't get him to look for long towards the camera. He's squirmy and you'll see him try to get at his cannula. The beeping you hear is the O2 saturation alarm, he started to drop while I was recording, but he came right back up to normal levels (like he always does).




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UMC Charges (8/22): $2,800.00
UMC Charges (8/23): $2,800.00
Running Total: $308,521.44
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8/21/06: Day 38 (Mon.) Adventures in B-Feeding

Today I had the opportunity to meet the wound care specialist who has been overseeing Evan's bi-carb burn on his right foot. She hadn't seen his foot in about a week and was very happy to see how well it is healing. She thinks he'll only need about one more week of the treatment (and she lessened it to just once a day). It's nice to know the next time he gets a bath, he can immerse his foot in completely in the water.

The little guy still loves to tug on his nasal cannula and gavage tube. The nurses had to replace both since they were coming too loose. He was able to completely pull the cannula out down to his mouth. He is super-sneaky...he'll make it look like he is just putting his hands up to his face, but then he'll dig his fingers into the top of the tape and pull down.He definitely was not a happy camper when they taped it all much tighter to his face. We'll see how long this one lasts. They did wean him down to .30 on the oxygen flowmeter and he does great when he's mellow; but when he gets agitated (like during diaper changes and such), he desaturates too much (sometimes he'll drop into the 70's which is not good). So they usually bump him back up to .4 or .5 when they fidget with him and then turn it back down when he sleeps. They want his O2 saturation to be between 88 - 100.

For those of you who don't want to read about my adventures in breastfeeding, you can skip the rest of this post! ;-) The main goal for this week is to see how well Evan will take to breastfeeding before I go back to work on Friday. After Friday, they will try to bottle-feed him my breast milk instead of feeding him through the gavage. They hope by testing him on b-feeding, that I will be able to go back a forth between that and the bottle once he comes home.

Over the weekend, which was the first experiment with b-feeding, he didn't do much, so we still had to gavage the whole feed, but he was getting more interested every time we did it. Today, I am happy to report, he latched on for almost 8 minutes during his 6pm feed. Since he was actively latched on for that amount of time, the nurse reduced his gavage amount to about 20ml. The longer he is latched on, the more they reduce the gavage feeding. The lactation consultant (Gloria) was very pleased with how he did since he is still about a month premature.

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UMC Charges: $2,800.00
Running Total: $302,921.44
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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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8/19/06: Day 36 (Sat.) Cranky Day

Our little guy is four weeks away from being a full-term, 40-week baby! Hopefully that means he'll be coming home within that time. It's been so much nicer since we can put him in clothes (he's starting to look like a normal kid). Thanks to those of you gave us baby clothes as gifts, they are now coming in handy.

We were at the hospital for his noon, 3pm and 6pm feedings, so it was a long day! Almost all the babies in pod 3 were cranky today, including Evan (he was the least cranky out of all of them). He is getting a lot more sensitive to when his tummy is empty, and he lets everyone know that. Once the milk starts hitting his stomach through the gavage tube, he's happy. Since we were there for so long today, we both had good quality time holding him. He loves tugging at the tape keeping his nasal cannula in place, so we have to wrap him like a burrito to keep his hands down. While we're holding him and he is in sleep-mode, he has been putting his hands to his face and mouth, which the nurses say that's a sign he is able to comfort himself.

Nothing new on the medical front aside that his burn foot is still getting treated and they are still increasing his feeds 1ml every 3 hours. I think he was up to 40+ml today and the new goal is to get into the 60mls per feeding.

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UMC Charges: $4,000.00
Running Total: $296,321.44
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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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8/16/06: Day 33 (Wed.) ROP Test Results Good

Another good visit today...really not much to report. If Evan keeps tolerating all the increases to his feeds, he'll be off of the IV. Today he was up to 20ml with the goal being 35ml. He's being fed every 3 hours and every time they feed him they up the amount by 1ml. So, doing that math, by the next 15 feeds he should be at full feed (on Friday)!

I did get clarification on his ROP test results from the attending doctor, Dr. Tsai. She said his results sheet stated "Stage I Zone 2". Without going in detail (you can read about it on that hyperlink I posted), his results are of the mildest form with nothing to worry about. He'll be checked in 2 more weeks to see if the blood vessels improve.

This note is for my soccer buddies who may be reading this...you would not believe who I ran into when I was getting off the elevator at UMC....Barb! Barb was there to visit with her daughter who was in the ICU. Barb came up to the NICU and got to see Evan...it had been so long since I had seen her that she was shocked to hear I had a baby. She misses all the soccer ladies and wishes she could come back out and play.

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UMC Charges: $4,131.50
Running Total: $284,246.59
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8/15/06: Day 32 (Tues.) Hearing Test

Great news to hear Evan passed his hearing test! He also had his eye exam, but Marianne wasn't able to decipher the test results page. The doctor scribbled something on the page to the effect that he needs another follow-up test in 2 weeks. So, I am guessing they saw something that they want to double check. Marianne said Evan was not a happy guy when she put the drops in his eyes to get them to dialate. She said he was fine when she put them in his first eye, but when he figured out the drops stung a bit, he refused to open his other eye. She had to really work to get that other eye open. They do the hearing test when the babies are sleeping, so Evan never felt a thing.

Evan is doing super-great on his feeds. He is up to over 20ml every 3 hours. The goal is to get him to "full feeds" which I think is about 35ml for him. Thank goodness this boy is starting to eat more since I have so much frozen milk in my freezer I need to get rid of!

Dr. Cahan stopped by while we were visiting and we asked her about the possibility of Evan being transferred to the Sierra Vista Hopsital now that he was reclassified to a Level II care baby. She was unsure of the level of care the SV Hospital could give and she said she would check on that. Since Evan was sick for so long, she is cautious to transfer him for fear of him having to come back to UMC in case he gets sick again. One of the nurses nearby said that she knew the SV Hospital will take a baby only if it is off an IV (Evan still has an IV even though it is just running supplemental TPN (Total Parenteral Nutrition). Once Evan gets up to full feeds, he won't need that IV anymore (but he'll still have the PIC line in just for emergencies). So, it looks like our guy won't be coming back to Sierra Vista in the near future such as within a week or so. His primary nurse Marianne isn't eager to see him go either since he has been so easy to take care of.

Today we also found out one of the nurses taking care of a baby right beside Evan was the Air-Evac nurse who took care of him inflight the day he was born. Takeshi thought she looked familiar when she was talking to us. She has been happy to see how far he has come in almost 5 weeks. :-)

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UMC Charges: $4,765.45
Running Total: $280,115.09
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8/14/06: Day 31 (Mon.) ROP & Hearing Tests Tomorrow. I Month Old!*

Another slow and steady day! Not much news to report on aside that Evan is being the perfect patient in the NICU! ;-) I think tomorrow he is getting his eyes checked. All preemies get their eyes checked for a disease called Retinopathy of Prematurity or ROP. Since Evan was a 30+ weeker, he shouldn't have this disease, since it is more common in the littlest preemies. Both T and I held him today...I'm getting better at lifting him out of the crib (it's still scary with all those wires). Give me a few more tries and I'll be a pro by then!

Evan's nurse Marianne took all that white tape off his cannula and replaced it with clear tape, so you can see his face better in these vids.



In this vid, you can hear Evan doing this snorting thing. He had just had his repiratory therapy before we shot this:



Another vid where Evan was snorting (we were bored today, o.k.?)




Evan being all comfy while he was sleeping.



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UMC Charges: $4,949.25
Running Total: $275,349.64
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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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8/12/06: Day 29 (Sat.) Hoping to Be Off CPAP

First off...happy birthday to my Dad down in Florida! Miss and love you guys!

Another good day! I found out Evan has gained over a pound since birth, he's now up to 4 lbs. 10 oz. (he was 3 1/2 pounds when he was born). His weight has never been a big issue with the doctors, so he'll more than meet the weight requirement by the time he comes home. Evan is at the 35-gestational week mark, so getting closer to that full-term goal. I still get pregnancy updates from www.babycenter.com and this is what they say about this week's development: "He weighs a tad over 5 pounds (think bag of sugar) and is just over 18 inches long from head to heel." I guess he's not too far off that mark! I'm not sure of his current length, we'll check on that tomorrow.

Evan is still on the CPAP today...but a little birdie (aka one of the resident doctors) told me that he's very, very likely to come off of it tomorrow. So hopefully tomorrow we will finally get to see our guy without any obstuctions on his face (aside from the nasal cannula). He'll be very mobile with the cannula, so we'll be able to move him around a bit easier.

Evan's nurse today told me he was great all morning...he slept like a log, but right about the time she had to fiddle with him (draw blood, change diaper, do his respiratory therapy session, etc..), he got really fussy. He still doesn't wake up and open his eyes, but he'll tense up his face and start crying when he gets going in one of his fussy spells. The nurse thinks he is catching on to the time pattern of when the nurses have to work on him. Amazing how babies figure it all out!

Fingers crossed tomorrow we'll have some good pics of the little guy CPAP-free! :-)

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UMC Charges: $6,533.05
Running Total: $264,796.44
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8/11/06: Day 28 (Fri.) 4 Weeks Old!*

Amazing that we're at the one month mark...starting to see a tiny, tiny light at the end of the tunnel. Here's Evan's one-month picture...yes, there is a baby in that picture under all that stuff.

T got to hold Evan for the first time today. Despite the rocking chair killing his rear, he held him the whole time. Marianne had told us when we walked in that she had just gotten Evan settled down, he was not having a great afternoon (just his typical fussiness about the CPAP). But, when T held him, he went right into sleep mode and didn't complain at all. Marianne was hoping they would move him off the CPAP today, but she said the doctors are still being cautious. They don't want to rush it and risk him going backwards back onto the respirator. His blood gases have been spot-on, so that is a super-positive sign he will be ready to move off the CPAP very soon.

The nurses are encouraging us to hold him as much as possible when we visit. It seems like he has hit that stage where he is reacting positively to personal touch. Marianne said she has been holding him as much as she can, but she usually is taking care of another baby along with Evan and that makes it hard. Preemies in the early stages don't react well to personal touch (the most we could do was touch/hold his head and feet to simulate the feeling in the womb)...so it is encouraging to see that he is reacting now. While T was holding him, his heart rate, breathing and oxygen saturation levels were all perfect.





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UMC Charges: $6,862.45
Running Total: $258,263.39
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8/10/06: Day 27 (Thurs.) Taking a Break

As you can see, this obviously is not a picture of Evan! I had to snap this picture of Max, who faithfully stayed up with me while I wrote last night's blog at midnight. I hadn't even realized he was on the couch behind me until he started semi-snoring. :-)

We didn't drive up today to the hospital, I needed a little break from that drive. I spoke with his nurse around 10pm and not a whole lot to report. They took Evan off his Fentanyl drip, so no doubt he'll be fussy until his body gets used to that. He still gets Adivan periodically, so it's not as if he's completely without pain medication. He's still on the CPAP, which we expected. I'm taking bets from any of you out there on what day you think he'll be off the CPAP, give us your best guesses! :-)

I wanted to give a holler out to all of you who have been e-mailing me with your support and thoughts. I have been so bad about e-mailing people back and I apologize! I do appreciate all the e-mails! Even though I've been off work, my life has been revolving around pumping every 3 hours/24 hours a day (ouch) and driving back and forth to Tucson (I do get some sleep in between those times).

Oh, Bull, if you are reading this...note I changed the main title of the blog, just to stick it to ya a little more. I really think it will be Green Bay's year! ;-)

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UMC Charges: $6,506.05
Running Total: $251,400.94
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2 More Short Videos*

Two more videos from August 8th:



In this one you can hear Evan's hoarse little cry. When this kid gets his voice back, look out, he's a screamer!!

8/9/06: Day 26 (Wed.) Moved into Pod 3 & First Bath

Much better weather day in Tucson! I managed to drive home before the storms hit today! Here's a pic of Evan's new digs in pod 3. He has a nice view of the Catalina Mountains (and a great view of the Air-Evac Helicopter as is arrives). He is still wrapped up comfy like a burrito, actually today, it looked more like a straight-jacket since they used a pillow case folded longways. :-)

You can see he has a little tent over his face to keep it dark. We put some socks on his feet to keep him from kicking off his dressings. I was happy to hear that they only draw blood from his left foot every 12 hours now to check his blood gases. Since they could only draw blood from his left foot, the bottom of his foot looks a mess with all the little cuts. They use a device similar to what diabetics use to draw blood for their tests, but after a while, there's no more new places to stick on his little foot. His right foot is still healing slowly from that bi-carb burn.

His primary nurse, Marianne, was back on shift today. Today was the first time she has seen Evan since they moved him into the crib and put him on the CPAP. We tag-teamed and gave the little guy a bath (finally). Marianne held him with the oxygen mask while I washed his hair. He totally zoned-out with a smile on his face while I was doing it, so hopefully it made him feel better. He didn't fuss at all when we finished and went right back into his deep sleep-mode.

The attending physician (Dr. Cahan) stopped by and she was happy to report how well he is doing. I asked her if he would be on the CPAP for about a week more. She said she thinks he'll only be on it a matter of days now, but she doesn't want to rush it. So, hopefully, maybe, by this weekend he'll just be on the nasal cannula. Marianne said that when she does all his "cares" (that's when she changes out IV lines, diaper change, draws blood, feeds him, etc...) she has taken him briefly off the CPAP, and she notices he breathes well on his own (but he still has a bit of retracting). Retracting is when he sucks in his chest really deeply during a breath.

He still gets his respiratory therapy every 6 hours. He has been getting albuterol inhalant therapy, which the RT says is helping him a lot. He also gets his few minutes of percussion treatment on his back. He didn't fuss and cry at all when she did it this time. Afterwards, they have a lot of stuff to suction out of his mouth, and that's a good thing. He did cough a few times, which is also a good sign. So, with all this therapy, he should be progessing along just fine.

Tomorrow I am taking a break from the hospital and catching up on things at home. I'll call the hospital to get an update and will still post tomorrow.

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UMC Charges: $6,693.85
Running Total: $244,894.89
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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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8/7/06: Day 24 (Mon.) Off the Respirator and on the CPAP

Today all I was looking forward to was Evan moving into a crib...I definitely wasn't ready for this...Evan is off the respirator and onto the CPAP now!! I even got to hold him for the first time today!

This picture shows him in his new bed. The nurse was getting ready to do the heel stick to take his blood to monitor his blood gases (the blue thing is a warmer that helps blood flow into his foot before the stick). He was a bit squirmy, so the resolution on the picture isn't too good. After I took this picture, he kicked off the foot warmer (his usual thing to do).

Evan seems much happier, but still has his angry bouts. No doubt he is angry that now he has this thing covering his nose that is shooting high pressure air into his lungs. The funny looking hat doesn't help either! The hat has velcro to help keep the CPAP on his nose. He doesn't have much a voice since the tube came out, his voice will recover in a few days. He does try to cry which is helping to get all the crud out of his lungs. When he's breathing calmly, he makes a sound like a lawnmower when you try to start it. I call him the "bubbler" since he makes a lot of spit bubbles.

Tomorrow we'll get some video and more pictures of us holding him.



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UMC Charges: $8,504.20
Running Total: $231,416.94
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8/6/06: Day 23 (Sun.) Test Results Looking Good

Wow...what a great weekend it has been! Not only did Evan get moved onto the conventional respirator, but he is about a day away from being moved into a crib! Marianne was hoping to move him into one today, but the NICU seems to be in short supply of cribs. Hopefully by tomorrow he'll be in a big-boy crib! Since Marianne has been wrapping him up like a burrito, his incubator has been way to warm for him. He doesn't have trouble maintaining his body temperature (since he has built up some baby fat), so the attending physician says he can move into some new digs. She also said his chest x-ray looked great (no deflation of his lungs on the conventional respirator), so it's looking like his lungs are finally getting mature!

His blood gas test results have been right on the mark...so fingers crossed he keeps those numbers steady. According to Marianne, he has been a lot calmer although he still hates when she has to move him, change his diaper or take blood from his foot. Basically, he hates when anyone makes him move out of his comfortable position. We even got to see him open his eyes just a little bit. It seems hard for him to open them completely since he's so sedated. I was shocked to look at him and actually see him crack his eyes open a bit.

So proud of dad today...T changed Evan's diaper (with a little help from me)! Marianne said last night Evan even had his first BM (even though it was very small). The breast milk feedings must be moving his intestines to get all that meconium out. So I guess we should cherish these easy diaper changes before the big BMs arrive!

We'll keep the video camera at the ready in case he decides to open his eyes a bit again! BTW...we added some videos to past postings...there is one below and there are 2 other videos on July 17th and 18th.

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UMC Charges: $7,580.85
Running Total: $222,912.74
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8/5/06: Day 22 (Sat.) On the Conventional Respirator*

A very good day today! Another small hurdle has been cleared...Evan was taken off the oscillating (high frequency) respirator and is now on a conventional respirator! Fingers crossed he won't have to go back to the high frequency respirator!

Evan's primary nurse, Marianne, told us that Dr. Edde made the decision Saturday morning to switch him over. The doctor just had a feeling it would work, and she was right. When they switched him over, they had to manually give him oxygen (with that squeezy-bag-thing, for a lack of a better term)...but, Marianne said that he was breathing on his own during that time. Another good sign that his lungs are maturing. Now, the next step is to keep monitoring his CO2 levels and if they remain in the good zone for an extended period of time, then they can wean him completely off the respirator onto the nasal CPAP.

He was in a much calmer state today...Marianne has continued suctioning him more often which is helping (although Evan gets so mad in his face when she is doing it). She is also keeping him in a swaddled condition with a thin blanket. She said this is also helping him stay calmer and keeping his arms and legs from flailing around so much. They also say he is keeping his body temperature consistently at a very normal level, and that means he may be able to move into a crib soon. When that happens, it will be much easier for us to finally get to hold him.

Now that he is on the conventional respirator, the respiratory technician (RT) has to do "treatment" on him to help get all that gunk loose in his lungs. While we were there, one of the RTs, Roy, did a session on him. All he does is tap this cup-like thing on his back for a few minutes, then suction him. Evan didn't like it at all and it was evident in his face (he turned bright red and looked like he was trying to cry). It's all progress though!

Momma changed his diaper while dad watched...T still hasn't done a diaper change by himself yet. Hopefully that will change soon! He's still getting his feeds (3ml every three hours). So far, no adverse reaction to the breast milk. Now that they took out his arterial line a few days ago, they are taking all his blood gas test from his heel (which he doesn't like very much either). The burn on his right foot is still healing (it is classified as a third-degree burn, ouch). Hopefully it will be completely healed by the time he leaves the hospital. When Marianne was switching his Pulse Oximeter from his foot to his hand, Evan gave her a big fight...he refused to open up his hand...we were all shocked at how strong his little fingers were. She eventually got the monitor placed properly, but the kid's got grip!

Lots of good news today on Evan's 34-week mark (6 weeks away from being full-term)!



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UMC Charges: $8,171.05
Running Total: $215,331.89
-----------

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.

8/4/06: Day 21 (Fri.) 3 Weeks Old!

Wow, three weeks...it has sort of flown by, but in some ways still has been like an eternity for us. His September due date (hopefully around the time he will come home)...seems like a year away at this point. I was joking with the attending physician today that Evan will be walking by the time he decides to come off the respirator!

I had a good talk with the new attending physician (Dr. Cahan)...she told me the steroid treatment hasn't been normalizing his CO2 levels as she had hoped. He's had really good results on his blood gas lab results, then they'll adjust (turn down) his respirator settings, but then his next lab results will show that they need to turn the respirator settings back up. She is planning on finishing this course of steroids on Sunday, and maybe starting another course of small doses if he still doesn't show the results they are looking for. She is thinking of maybe testing him and putting him on the regular respirator in a few days. She doesn't want to be too hasty in doing that since she doesn't want to risk his lungs deflating. They are attributing his slow weaning to that darn pulmonary hemorrhage he had during that first week he was admitted.

The doctor said no change to the IVH conditions I posted about earlier. That's good news...no change is good. His chest x-ray was also looking fine. His primary nurse Marianne was working today and she has figured out why he seems to be so fussy at times. Normally, the nurses will only suction his lungs about every 4-6 hours. Marianne found that when he starts getting fussy, he needs suctioned...about every hour. He calms right back down after she does it. They are feeding him 1 ml every three hours now, so he is tolerating the breast milk.

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UMC Charges: $6,591.05
Running Total: $207,160.84
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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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8/2/06: Day 19 (Wed.) Arterial Line Removed

When T and I go up to visit, we really try to be drama-free. Our visit started out to be that way, but of course, Evan had to give us a little scare. His primary nurse Marianne was on duty so it was nice to have someone give us all the news without having to pry it out. On the days she isn't working, Evan will get some random nurse who isn't always the most forth-coming with info. Marianne had overheard the doctors say they may switch him over to the conventional respirator in a few days. Although the conventional respirator is a bit harsher on preemie lungs, it will give Evan more of a chance to breathe on his own. Right now, he is trying to breathe against that oscillating respirator and that is a hard thing to do. They have continued to turn down the amplitude on the oscillating respirator, so he isn't vibrating as badly anymore.

As for Evan giving us a scare...I had thought he had scratched his stomach since I saw a thin line of blood appear on his tummy. He had started to be fidgety again, so I thought he scratched himself with his right arm (his right arm has the art line and a catheter-like thing where they take blood from him). As we stood and watched him, we saw more blood appear on his stomach when he touched his right arm to his stomach and we figured out the blood was coming from the art line.

T told Marianne about it and she ended up getting the doctor on call to come take a look. Evan has had that art line since he got there, so the doctor ended up taking it out, cleaned up his right arm since it was covered in blood and planned on reinserting it later. They also use that art line to monitor his blood pressure, so they put this little blood pressure cuff on his leg to keep monitoring his levels. While the doctor was taking out the art line, Evan's heart rate went sky high (I think I saw it hit 190 at one point). The doctor wasn't too concerned since she said his oxygen saturation was still in the good range. After she was done fiddling with his arm, he calmed down a lot. They said Evan's vital signs are interesting...he'll have a big jump in his blood pressure, but his heart rate will stay normal, or his heart rate will shoot up and his blood pressure stays low. They aren't sure what is causing it, but it isn't something that is alarming them.

Tomorrow Evan will get another head ultrasound and chest x-ray. The head ultrasound will check again on the IVH areas in his brain...since the last result showed no change to those areas in his brain, they anticipate this one will show the same. The chest x-ray will reveal if his lungs have completely healed from that hemorrhage about 2 weeks ago. He is still getting breast milk feeds every 12 hours. So, things are starting to look up...the next stage will be moving him back to the conventional respirator. Hopefully more good news after tomorrow!

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UMC Charges: $6,738.00
Running Total: $193,567.49
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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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