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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8/9/06: 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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8/5/06: 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
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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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