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)!



-----------
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
--------------

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
-------------

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
-------------------

7/31/06: Day 17 (Mon.) PDA is Healed!

Some good news today...they did Evan's chest ultrasound and it showed that his PDA is all healed. No PDA ligation surgery, yea! We had the opportunity to talk to Dr. Edde while we were there and she was pleased to give us the good news. She is considering starting a mild steroid treatment in hopes of giving him a little push to wean off the respirator. I think she had said this was her last day as the attending physician, so I think she was going to confer with the oncoming attending physician to be sure of the treatment plan.

Evan was so nice and calm when we first got there, but then, turned into mister fussy again. T and I watched him like a hawk since he was flailing his arms around (we were worried he would dislodge the respirator tube). It seems like every time they give him his dosage of Ativan, he gets really agitated. It was sad watching his little face grimace like he was trying to cry. It was like he was really trying to get that tube out. One of the nurses put a little bit of this sugar-water mix on his lips...she says that the mixture causes the brain to release endorphins (sort of like when you eat chocolate). He did start calming down a bit afterwards.

<12:05am>
O.k....the steroid treatment is a go! He'll be on a course of steroids for the next week (3 times a day, with the next three days being the highest dosages). His night nurse said he's been very calm (he hasn't pulled out his respirator tube thank goodness). Fingers crossed this will get him off the respirator! The nurse also said they started feeding him breast milk again (very small doses for now).

I'm driving up solo tomorrow so I can spend a bit more time with him.

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UMC Charges: $8,276.25
Running Total: $179,526.89
--------------------

7/30/06: Day 16 (Sun.) Head IV (Ouch)

A picture of Evan and his dad talking...it's really hard to get any good pictures while he's in the incubator. Not much to report today...when we got there we noticed he had an IV in his head (ouch). The nurse took it out while we were there...she thought they had put it in during the prior shift to give him more blood. His blood pressure went sky-high when she took the IV out (they had taped it to his head really well), but he calmed down a lot after she finished.

Evan was really fussy again while we were there...how nice of the nurse to tell us he was fine just before we got there. It doesn't help that every time we're there, they are rotating/repositioning him, which gets him a little upset. I changed his diaper and it was sopping wet, which is probably why he was fussy. He was breathing a lot against the respirator, so it's looking like he really wants to get that tube out. It's still better if he relaxes and just lets the respirator do it's work.

We're driving back up tomorrow, so hopefully there will be more good news to share. We're anxious to hear on Tuesday about how that medicine is doing on healing his PDA. The nurse told us he weighs almost 4 1/2 pounds, which still could be water weight, but he's looking bigger.

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UMC Charges: $8,240.55
Running Total: $171,250.64
------------------

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
-----------------

7/28/06: Day 14 (Fri.) Two Weeks Old! PDA Diagnosed

Today we took a break and didn't drive up to Tucson. When I called the NICU to get an update on Evan, the nurse told me she was going to have the resident doctor (Andrea) call to discuss the results of an EKG they did. Andrea called me back about 30 minutes after I had called and told me the results of the EKG weren't in the computer yet. She did say that Dr. Eddy (who is the main doctor) would speak with us on Saturday about starting steroid treatment on Evan to help wean him off the respirator. There are good and bad points of using steroids, but the benefits far outweigh the risks. The one big risk is that steroids supress the immune system which can make him prone to infection. The benefit would be that steroids cut down on the lung inflammation, which would help him breathe easier.

The rest of the call went well...nothing else major to report about. About thirty minutes later, the phone rings again and it's the NICU. Andrea was calling again to tell me she saw the results of the EKG. She said that the EKG shows that Evan has a PDA, which stands for Patent Ductus Arteriosus (it sounds like a Harry Potter spell to me). :-) It is a very common condition that the majority of preemies get. Not to get too medical technical on you, it basically means, a blood vessel near his heart and lungs did not close as it is supposed to do after birth. When a baby is still in the womb, that blood vessel sends blood directly into the aorta (bypassing the lungs which aren't being used yet). When a term baby is born and starts breathing, the PDA starts to close automatically. Since Evan wasn't born at term and didn't start breathing normally, his PDA didn't get that signal to close. Andrea says that almost 80% of the babies in the NICU have PDA, so he's not alone.

So, treatment is for him to get doses of indomethacin over the next few days (the only drawback is that this medication works best if the baby is within 2 weeks of birth and Evan is right on that time limit). If that medication doesn't close the PDA, then he will have to have surgery to close it. The PDA ligation surgery (if he has to have it), is a very safe operation and is always successful. They would go through his back (so it's not open-heart) and the result would be a very small scar that would fade over time. So, fingers crossed the medication works, but if he has to have surgery, it's not anything to worry about.

So now, with that second phone call, the steroid treatment is on hold since the PDA treatment takes priority. The PDA could also be contributing to Evan not coming off the respirator more quickly, so we'll be glad to get that cleared up. After the PDA heals, he may not need the steroid treatment anyway.

We'll get more details tomorrow after our visit.

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UMC Charges: $9,825.95
Running Total: $155,329.44
-------------------

7/27/06: Day 13 (Thurs.) IVH Status Unchanged

Another trip to Tucson today...I had the opportunity to talk with the resident doctor who is looking after Evan. The resident is really nice and easy to talk to...but she makes me feel old. Are doctors getting younger or am I just getting old!? :-)

They did another head ultrasound today to re-check those two areas I wrote about in an earlier post. They didn't see any change from the original ultrasound, so that is a great thing. It means it isn't getting worse and chances are, those two areas will just heal as his brain grows.

The doctor predicts (if all goes as it has been going), that he will be weaned off the oscillating respirator possibly late next week. She can't predict if he will go back on the normal respirator or if he will be able to go onto the CPAP. A little speck of light at the end of the tunnel...but, don't be surprised if he relapses again (all part of what preemies do).

One odd thing is that they did a genetic test on him (as they do will all newborn babies at UMC)...and he had two abnormal results. The doctor told me they will re-do the test later since they think the results aren't correct due to Evan having a blood transfusion prior to the test. One abnormality is with his thyroid level...that result didn't surprise me since I've been hypothyroid since '99. The doctor wasn't aware of my medical condition and wrote that into his chart. The other abnormality I can't remember what it was...all is remember is it's a long word. The doctor said Evan was only off by a point or so on the optimal range for that test (again, showing that the results are probably off due to his transfusion). Both result abnormalities aren't something short-term to worry about anyway according to the doctor.

The doctor told me down the road they may have to do some sort of plastic surgery on Evan's foot due to that bicarb infustion burn. She assured me the burn/wound specialists are keeping an eye on his foot everyday and are working on healing it the best they can. I didn't get to see his foot today since it was bandaged, but even his day shift nurse Marianne says, his foot will look worse before it looks better. We're still in the looking worse stage.

They re-started feeding him micro-doses of breast milk today. He is still getting complete nutrition through his IVs, so they are still just testing him to see what he will tolerate.

That's it for today!

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UMC Charges: $6,971.50
Running Total: $145,503.49
-----------------

7/26/06: Day 12 (Wed.) PIC Line Adjustment

We're almost settled into our hospital routine (not something I'm overjoyed about though). Today I drove up earlier in the day without T since it seems the past few days we've been so rushed to get on the road after he comes home from work, visit with Evan before shift change at 6:45 and then have to turn right around and head back home. It was nice to have a bit more time to sit with him and talk with one of his primary nurses, Marianne.

A tiny bit of good news is that they are slowly turning down the amplitude on his respirator. I didn't have the chance to talk with any of the doctors to ask them what signs they look for to take him off that oscillating respirator and onto the nasal CPAP or regular respirator. Now, it seems like we just have to be patient and let time mature his lungs.

The burn specialists looked at his right foot this morning and they are applying a special dressing to the burn. I got to see the wound and it looks really bad...the skin is all black in a square shape. They have to change out his dressing every 4 hours. Hopefully, he won't have too bad of a scar.

He had an x-ray today to check on the PIC line (to make sure it's in the right position). Marianne said they pulled it back a bit since it wasn't sitting in a optimal position. She wasn't sure if they were able to see the condition of his lungs on the x-ray...but she is sure they are healing well since she doesn't get much discoloration when she suctions his lungs.

Evan was really fidgity today, the most I've seen him move around. Marianne told me they are cutting back on his Fentanyl which is for pain and he is probably becoming more sensitive to the environment. In his right arm/hand is the catheter that monitors his blood pressure (the ART line). Since he's been moving around more, he kept flat-lining the ART line and setting off an alarm. Marianne just moves his arm and the monitor corrects itself. She laughs since he always wants to have his arm up (he usually keeps both his arms up, likes he's being held up at gunpoint). She'll put his arm down by his side, but he'll immediately put it back up. He likes to have his arm near the respirator tube.

That's it for today!

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UMC Charges: $7,035.25
Running Total: $138,531.99
-------------------

7/25/06: Day 11 (Tues.) First Diaper Change

Another relatively good day for the little guy. His nurse told us they are only checking his blood gases every 6 hours (instead of every 3 hours). This measures oxygen, carbon dioxide and acid content in a small blood sample taken from his artery. That's a good thing since it shows his respiratory system is slowly starting to kick in and they don't need to check it so often.

He was off the bililights (again)...so hopefully the jaundice is all gone. The burn on his right foot (that I wrote about yesterday) is going to get looked at by a specialist. The nurse told me those burns happen due to the bicarb infusions they do. If the IV isn't placed precisely correct (which is hard due to preemies little veins and arteries), a chemical-like burn can happen. At least it didn't happen on his forehead as is the case with other preemies. This burn is on top of his foot, so even if he gets a scar, it won't be that obvious.

I did get to change his diaper today! It's my first diaper change! He hasn't had a bowel movement yet, so it was pretty easy despite doing it through the incubator. The even weigh each wet diaper and it gets charted with the rest of medications and information. His eye lids didn't look so puffy today, so hopefully his swelling is decreasing. I was assured by the nurse that the odd shape to his head will go away (since he lays on his side all the time, his head is getting narrow and flat on the sides).

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UMC Charges: $6,863.45
Running Total: $131,496.74
-----------------

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
---------------

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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7/21/06: Day 7 (Fri.) One Week Old! IVH Diagnosed

O.k...back to the little guy...celebrating one week today! That puts him up to 32 weeks gestational age as of Saturday. Today was one of those days we hope we have more of...absolutely nothing extreme to report about. He was pretty much in the same situation as yesterday...sedated so the oscillating respirator can do its job. His blood gases keep improving and they did feed him with a drop of milk today...steady gains! His chest x-rays are also clearing up....each one is better than the previous one, so his lungs are slowly healing.

The doctor did tell us his head ultrasound showed a mild (for you medical techies...grade 1 and 2) intraventricular hemorrhage (IVH) in his brain. They say this is very common due to the trauma of a preemie birth. There is little risk of any complications since his grades are so low (low grades are good in this case). ;-) IVH grades range from 1 being very mild to 4 being severe. They will do another head ultrasound in about a week to see if the hemorrhage is growing or shrinking. Since his vital signs are so good, they anticipate that it is healing itself. It was great for the doctor to tell us that Evan's case isn't anything they haven't seen before, so he's not unique (for once it's good to not be unique)!

We got a book called "The Essential Guide for Parents of Premature Babies" and has been a great read to get us caught up on all the NICU terminology. It's reassuring to read that Evan fits right in line with a lot of the book, which helps answer many of our questions.

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Chronological age: 0 months 1 week 0 days
Adjusted/Gestastional age: 31 6/7 weeks
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UMC Charges: $8,019.90
Running Total: $102,283.04
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Pictures from Grand Convention

O.k...I know this isn't a post about the little guy...so bear with me. Two weeks prior to Evan deciding to join us, I was in San Antonio for the Kappa Alpha Theta Grand Convention. Wow, so lucky he decided to wait two weeks. All that estrogen during those 4 days probably scared him into staying in anyway. ;-) It was a fun time, from the picture, you can tell my hair was loving all that humidity (ick)!

The picture is of all the Permanent Alumnae Secretaries (PASs) who were in attendence. I am the PAS for my college chapter and all that means is I keep track of everyone's addresses. My chapter is relatively easy to keep track of since we have young alumnae (who are almost all on e-mail) and we are a newer chapter (we only have about 350 alumna).

The ladies in the picture are PASs from all over the country and keep track of these collegiate chapters: Purdue, North Dakota State, Ohio Wesleyan, U of South Florida, Denison, Penn State, UNC, Loyola Marymount, and USC (oh, and me keeping track of Washington & Jefferson College).

Oh...and for Joey P...I didn't get any good film of sorority girl pillow fights or anything like that! I know you'll be disappointed! ;-)

This picture is of me with the officers who attended Convention (Rachel, President; Jen, VP Education; Kristin, Convention Awards; and fellow advisory board member Marge)

7/20/06: Day 6 (Thu.) Chin-Butt Alert

Busy day today...thanks to my Doctrine co-workers for throwing me a baby shower/luncheon at Johnny Carino's. I'll go out to eat anytime, just give me a call!

We drove up to Tucson around 2:30pm...getting there sometime after 4pm. Evan is off the bililights (yea)! The nurses say the jaundice could come back, so no need to worry if we visit another day and he's back under the light. Now we could sort of see his face without the eye covers on. His eyes (and face in general) are swollen from water retention.

From the picture you can see that Evan does have a little inkling of a chin cleft (or "chin-butt" as we call it), indicating that he is indeed momma's boy! Score one for mom! His hair is still a mess since he hasn't has a bath yet, so we can't really tell what his hair color is.

He is still on the oscillating ventilator which is giving him 500 breaths per minute, but they have reduced the amplitude settings (meaning, the breaths aren't as forceful). We got to speak with one of the resident doctors and she said they hope to start feeding him through a gavage (instead of the umbilical cord) maybe Friday. What they will do is test him to see if he will tolerate being fed through the gavage (feeding tube through the nose down into the stomach) and increase the amount given to him. If he doesn't tolerate it (if he is showing too much bile in his system), they'll put him back on the umbilical cord IV feed line.

His CO2 levels are still coming down (I think they were in the 40's), which is good. They took another chest x-ray and it is slowly getting clearer. They are still trying to determine what caused the Tuesday episode by doing a culture of some lung fluid. In the lab, they'll work with it to see if any viral or bacterial stuff appears. It takes a few days to do it, so no results yet. With all the people in and out of the NICU and different people handling the babies, it's a wonder more babies don't catch a little bug.

His red blood cell counts are going up, so he didn't have to have any blood transfusions. While we were there, we got to see the nurse do the fun job of flipping him from his belly to his back and rotating him (his bed is slightly slanted so he needed to be upright). It took a team of 3 people all having to pitch in and help since he is a tangle of IV lines and his respirator tubes. His poor little head is all misshapen since he has to keep his head turned to the side for the ventilator. You can sort of see in the picture (that was after they flipped and rotated him) that the side of his head is flat.

So, overall, it was a good day...no major bump in the road.

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Chronological age: 0 months 0 weeks 6 days
Adjusted/Gestastional age: 31 5/7 weeks
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UMC Charges: $$8,176.30
Running Total: $94,263.14
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7/19/06: Day 5 (Wed.) Lungs Healing

First off, Happy Birthday to my Mom down in Florida!! I don't think we're planning a trip up to Tucson today. I'm working on getting paperwork done for medical leave, Evan's birth certificate and other stuff.

I spoke with Evan's nurse this morning (Marianne). She was the nurse on duty yesterday when he had the bad day. She said he is doing much better now. His morning chest x-ray still was a cloudy-white, but not as bad as yesterday. She said the doctors are just letting him run his course, there's not much worry at this point.

She said last night when they suctioned his lungs there was a little bit of a pink tinge indicating some blood, but this morning when she suctioned him again, he was all clear. Yesterday, prior to his episode right when we got there, Marianne had given him a dose of blood platelets which they think may have helped him heal faster. They think he had some sort of scratch in his lungs that caused all that blood to appear yesterday (which is a common thing due to that darn respirator). Last night, his red blood count was low, so he got a little bit of blood again. They are continuing to check his blood gas counts every few hours.

They hope to take him off the bililights maybe tomorrow since the jaundice is working its way out. Marianne said his leg bruising is almost gone also. So all in all, it's a good day so far. I'll call the night shift nurses this evening to see how all goes today and post more later.

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Chronological age: 0 months 0 weeks 5 days
Adjusted/Gestastional age: 31 4/7 weeks
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UMC Charges: $9,506.05
Running Total: $86,086.84
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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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Updates

So you all understand the picture in the previous post...Evan's legs were bruised since he was in a completely breech position...he had to be pulled out by his feet. That picture was taken at SV Hospital right after he was born.

As of Sunday 7/16 8:30am: NICU nurse told us he had to be sedated last night since he was fussy. She said he was a "noodle" today, which I think is a good thing, that he is resting comfortably.

As of Saturday 7/15: NICU nurse told us they reduced his ventilator a notch. He had to have a little blood transfused since his body at this preterm age, doesn't reproduce blood yet.

7/14/2006: (Fri.) Our early arrival!

Apologies for this mass e-mail, but things have gotten a little crazy recently! For those of you who haven't heard already, our little boy decided to come early...very, very early.



Evan Michael Dorris was born on Friday July 14th at 12:38pm by emergency c-section in the Sierra Vista Regional Medical Center. He is about 9-10 weeks early (about 30 weeks old). For his age, he is pretty good size baby...he weighed in at 3 pounds 8 ounces. His only problem (thus far) is his immature lungs.


He was life-flighted to University Medical Center in Tucson at about 4pm on Friday and it is predicted he'll be there for about 8 weeks (until his original due date of 9/16). From what we've been told, UMC is a great facility, so there's no worries about the care he will receive. We're driving up tomorrow for the first time, since I just got released from the hospital.


So, if you don't hear from us, you'll understand we're in a bit of chaos trying to figure out how to deal with a premature baby staying in a hosptial and hour and a half away. I will post updates to my weblog (instead of e-mailing everyone). So book mark this page: http://soazsteelerfan.blogspot.com/

Keep us in your thoughts and prayers! We picked the name Evan since it means "young warrior" and this little guy has a bit of a fight ahead of him.

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Chronological age: 0 months 0 weeks 0 day
Gestastional age: 30 6/7 weeks
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University Medical Center (UMC) Charges: $8,823.90
AirEvac Charges: $16,479.00
Sierra Vista Hospital Charges (Evan): $4,159.74
Sierra Vista Hospital Charge (Jen): $10,474.36
Total for the day: $39,937.74
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About 9 weeks left!

The weeks have been flying by so I guess I have to get into gear and start buying some baby stuff. I guess I'm still in denial that this is really going to happen. :-)

At my doctor's appointment yesterday, they tell me I am measuring big at 35 weeks (and believe me, I am feeling all 35 weeks of that). I have another ultrasound scheduled on July 28th to see if the baby is measuring big (or is it just me). ;-)

The Name Game

My co-workers are a bit nutty....who says Army Doctrine Writers are boring??!! They started an office pool for people to guess this baby's birthdate and time. Participants are asked to pitch in $5 for their guess and who ever is the closest gets a gift certificate for pizza (or something similar). In order to tweak their guesses, I've had numerous co-workers interrogate me over my family history of child birth (were they early, were they late, etc...). It's been pretty humerous.

When the e-mail went out for this, one of our officers suggested that for $5, the winner should also have baby naming rights! Now, the e-mails are flying about possible names. The "best" so far is: Dweezel Dorris (nice)...Double D! Help me!!

Creeping up on 100 days to go...

Anyhoo...things are just cooking along...getting fatter by the day it seems. I still have a belly-button, but I anticipate that disappearing in another week or two. Thank goodness the hubby understands my inferno-like heat and has been willing to keep the house a bit cooler for me (the dogs are appreciative also). We've been getting into the high 80's/low 90's already.

Why did no one tell me about the nasal stuffiness, non-stop sneezing, hot flashes (all day and night), leg cramps, back pain, stomach muscle pain, and shortness of breath? I feel like I've smoked 3 packs a day all my life!

Only one week to go until day 100 left to bake!!

Job Description

Thanks to one of my friends for sending this to me...it's not as if this is freaking me out even more! :-)

Job Description

Mom, Mommy, Mama, Ma

JOB DESCRIPTION:
Long term, team players needed, for challenging permanent work in an often chaotic environment. Candidates must possess excellent communication and organizational skills and be willing to work variable hours, which will include evenings and weekends and frequent 24 hour shifts on call. Some overnight travel required, including trips to primitive camping sites on rainy weekends and endless sports tournaments in far away cities! Travel expenses not reimbursed. Extensive courier duties also required.

RESPONSIBILITIES:
The rest of your life. Must be willing to be hated, at least temporarily, until someone needs $5. Must be willing to bite tongue repeatedly. Also, must possess the physical stamina of a pack mule and be able to go from zero to 60 mph in three seconds flat in case, this time, the screams from the backyard are not someone just crying wolf. Must be willing to face stimulating technical challenges, such as small gadget repair, mysteriously sluggish toilets and stuck zippers. Must screen phone calls, maintain calendars and coordinate production of multiple homework projects. Must have ability to plan and organize social gatherings for clients of all ages and mental outlooks. Must be willing to be indispensable one minute, an embarrassment the next. Must handle assembly and product safety testing of a half million cheap,
plastic toys, and battery operated devices. Must always hope for the best but be prepared for the worst. Must assume final, complete accountability for the quality of the end product. Responsibilities also include floor maintenance and janitorial work throughout the facility.

POSSIBILITY FOR ADVANCEMENT & PROMOTION:
None. Your job is to remain in the same position for years, without complaining, constantly retraining and updating your skills, so that those in your charge can ultimately surpass you.

PREVIOUS EXPERIENCE:
None required unfortunately. On-the-job training offered on a continually exhausting basis.

WAGES AND COMPENSATION:
Get this! You pay them! Offering frequent raises and bonuses. A balloon payment is due when they turn 18 because of the assumption that college will help them become financially independent. When you die, you give them whatever is left. The oddest thing about this reverse-salary scheme is that you actually enjoy it and wish you could only do more.

BENEFITS:
While no health or dental insurance, no pension, no tuition reimbursement, no paid holidays and no stock options are offered; this job supplies limitless opportunities for personal growth and free hugs for life if you play your cards right.

Advice welcome...

For those of you with advice to share on this whole baby-thing....use the "comments" link to add your two (or three) cents. Also, any advice on baby stuff that I definitely need/don't need is greatly appreciated also. :-)

It's a Boy!

After paying for another ultrasound (after the less-than-stellar u/s last week at UMC)...we find out it is definitely a boy! I went to a place in Tucson called Already Adorable, which is a 3d/4d ultrasound business. Such a better experience! The 3d/4d technology is really incredible.

I got the package where I get 2 ultrasounds (the other will be at the end of July when I'll be about 32 weeks). So the change should be pretty dramatic from these pictures. Of course, this baby does not like to be photographed, so the pictures didn't turn out super-great.

20-week ultrasound experience

I need to vent about my 20-week ultrasound experience I had yesterday. My ob/gyn scheduled me for my 20-week u/s up in Tucson (at a big city hosptial that will remain nameless...ahem...the initials are UMC)...which is at least an hour and half away. My ob/gyn's office told me to check in at the Imaging Desk (which according to the hosptial signs, that is where all the CT/MRI/Ultrsound scans are done). I give them my name and they can't find me in the system, they finally tap into the main appointments database and tell me that I have to go up to the 8th floor to have my u/s done.

We make it up there and it's the labor/delivery floor that has an ob/gyn office attached. The waiting room was packed with pregnant women from all walks of life (it was a bit eye-opening to me). My appointment was scheduled for 11am, so I was very well hydrated and ready to go for an 11am u/s. The white board on the wall says they are running 40 minutes behind...immediate bladder shrinkage! Needless to say, I couldn't hold it anymore when 11:25 came. How ironic that I get called in at 11:30am!

Now for the fun part, I am thinking (just like my 2 previous u/s)! Wow was I wrong! The woman doing my scan took about 5-7 minutes doing all the measurements...all the while not speaking a word or telling me what she was measuring. After she was done doing all the measurements, I asked her if she was able to tell the gender. She very tersely says that that is not her priority (which I understand) and that if she had some extra time she would look. She finished up the last minute measurements and took oh, about 2 minutes to go back and try to determine the gender. She tells us very nonchalantly, well...I couldn't tell for sure, but if I were to guess it would be a boy. Wow...thanks...so much for my idealized vision of the u/s technician happily telling us what we were expecting. One good thing is that she said she didn't see anything out of place as far as heartbeat, structure, etc...with the baby.

She gave us 4 pictures that are of horrendous quality...I think one of them is a picture of a foot and the other three are profile pictures that I can sort-of make out a head/face. I am still really irked over the whole thing since my previous u/s experience was wonderful, the u/s tech guided us through the whole thing, pointing out what she was looking at. Last night it really hit me hard since I have no idea if I'll have another u/s during the second half of this pregnancy...I really feel like I was robbed of an experience.