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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7/31/06: 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
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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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7/27/06: 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
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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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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). ;-)

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.

20-week U/S scheduled

My 20-week ultrasound is scheduled for Tuesday May 2 up in Tucson. Yea! Another trip to Tucson! We'll be able to find out the gender (hopefully) at this one. Yes, we're being complete spoilers and want to know the gender. It's been so difficult for us to even get to this point in a pregnancy, that knowing the gender is not something we want to be a secret. I'll definitely post pics and info from that test.

Good news on the test...

I finally got a call today from my doctor's office with the results of the ultrascreen from St. Joe's Hospital. According to the results, I have no greater or lesser chance of having a Down's Syndrome baby than what is usual for my age (which is about a 1 in 400 chance). So good news, but it doesn't completely rule out the possibility. We'll be able to see more at the 20-week ultrasound towards the end of April.

If you scroll to the very bottom of the page, I set up a counter so you all can see where I am as far as weeks/days. Not quite halfway yet!

Can anything go right...?

Keeping you all updated with the continuing saga of the pregnancy. On March 10th, I was scheduled to have an ultrascreen done at St. Joe's Hospital in Tucson. The ultrascreen is an ultrasound and blood test that checks for Down's Syndrome and Trisomy defects (since I'm so OLD).

So, we drive up to Tucson and finally find some place legal to park at the hospital (FYI, Joe's Crab Shack is NOT legal parking)! Anyway, so we get there, get checked in and went with the ob tech to start the u/s. The ob tech was very spirited (I mean, high strung), so at least that was a high point. She explains (prior to starting my exam), that one time it took over 3 hours to get a picture of the baby in the right position for the test. I thought.....not me!! We'll be out of here in no time!

Well, we start the u/s and of course, the baby is in THE worst position possible for the test (head down). My inverted uterus doesn't help the matter at all since the picture using the abdominal ultrasound was terribly fuzzy (you can see how inverted I am in the pic below). We tried numerous "remedies"....drinking water and walking for 10 minutes; having a full bladder; having an empty bladder; turning on one side, turing to the other side, laughing, jumping up and down, chewing sugary gum....we even left to go eat lunch and still, that darn baby didn't want to move from the comfy spot!

The ob tech even tried the vag. ultrasound wand which didn't do much for the official test, BUT did show us a great close-up of the baby....we were able to see a good heartbeat, fingers/toes, a lot of arms/legs movement and the brain. She said everything looked exactly on target.

We saw the head/face too...if any of you are familiar with the Strong Bad cartoons on-line...the baby looks like that (we laughed a lot over that). Check out www.homestarrunner.com/sbemail.html and you'll see what we mean. :-)

The OB tech was also able to get a pretty good bottom up view between the legs and she thought she saw some bait and tackle there....so who knows...it might be a boy? At 12 weeks I'm not sure of the reliability, but it was nice news. So...after almost 2 hours of being poked and prodded, we gave up...SO...next Monday I get to go back and try it again. The doctor on site said that women with inverted uteruses (or is it uteri?) usually correct themselves in between weeks 12-13. So that should make the picture look much better and hopefully the baby will move in a better position.

The hubby did have some words of consolation...he said that maybe things are hard at this point so it will be easier down the road. Wishful thinking! :-)