Bye Bye to the Crud

Evan has almost fully recovered from the crud...just a little lingering cough. He was almost back to himself today. On Friday, I took him to get his chest x-ray (always fun)! Of course he was not cooperative; so it took me and 2 other x-ray techs to hold him in place. They had to take 2 sets of films since he moved. No word from the doctor on the results of his x-ray, so we assume all is well. We still have to get the EKG done here locally, probably tomorrow.

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

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

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

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

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UMC Charges: $6,591.05
Running Total: $207,160.84
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8/3/06: Day 20 (Thurs.) The Snot-Man

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

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

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

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

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

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

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

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UMC Charges: $7,002.30
Running Total: $200,569.79
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8/2/06: Day 19 (Wed.) Arterial Line Removed

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

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

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

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

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UMC Charges: $6,738.00
Running Total: $193,567.49
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7/29/06: Day 15 (Sat.) PDA Treatment Started

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

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

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

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

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UMc Charges: $7,680.65
Running Total: $163,010.09
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7/26/06: 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
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7/22/06 & 7/23/06: Days 8 & 9 (Sat. & Sun.) Still Working on His Tan

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

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


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

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

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

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

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UMC Charges (7/22): $6,832.35
UMC Charges (7/23): $7,956.65
Running Total: $117,072.04
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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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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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7/18/06: 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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