10/31/06: Day 109 (Tues.) Halloween!

Halloween is one of my favorite holidays (even though we did no decorating this year). Arizona Halloweens are nice since you don't completely freeze your butt off waiting for trick-or-treaters. The area where we live makes trick-or-treating very easy for kids...too easy that you'll see vehicles with Mexican license plates parked all over. It reminds me of those Halloweens when we were in Germany when the locals would arrive in droves to the American housing areas.

I didn't put Evan in a Halloween costume...just a little romper with a Halloween design. He had red-eye in the pic, so when T edited it, he sort of looks like an alien-eyes now! ;-)
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Chronological age: 3 months 3 weeks and 4 days
Adjusted/developmental age: 1 month 2 weeks and 3 days
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10/30/06: Day 108 (Mon.)

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Chronological age: 3 months 3 weeks and 3 days
Adjusted/developmental age: 1 month 2 weeks and 2 days
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10/29/06: Day 107 (Sun.) Will the Steelers ever win? :-(

Wow, another Steeler loss today (and to the Raiders of all teams...thugs)! Evan is getting used to our new house guest, T's mom. She'll be watching Evan during the day when I go back to work on Wednesday. T has been able to get Evan to take about 3.5 ounces during a feeding which is a good increse in volume. He never finishes that much when I feed him. He slept really well last night, he only got up around 4:30am after going to bed around 11pm. Of course he always sleeps well when it's T's night to take care of him. ;-)

A reminder now that the rest of the world fell back an hour, Arizona doesn't...so we're on back Mountain time zone (2 hours behind the east coast, 1 hour ahead of Cali).
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Chronological age: 3 months 3 weeks and 2 days
Adjusted/developmental age: 1 month 2 weeks and 1 day
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10/28/06: Day 106 (Sat.) Baby Einstein

This picture is actually from last night. Luckily I was able to snap it before Sadie had moved. We had Evan sitting in his Bumbo chair watching a Baby Einstein video (I'm lovin' these)! It was the Baby Beethoven one. Anyway...Sadie comes in and plops herself right down beside him to watch the video also. It helped that T was sitting there, since Sadie is always wanting to be near him. It was a funny sight! Evan was pretty attentive to parts of the video.

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Chronological age: 3 months 3 weeks and 1 day
Adjusted/developmental age: 1 month 2 weeks and 0 days
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10/27/06: Day 105 (Fri.) 15 Weeks Old!

Since Evan didn't have a weight check at the doctor's office, I did an "unofficial" weight/height check at home. The results are listed below.



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**Weight Check (unofficial): 9lbs. even
**Length (unofficial): 21 inches
Chronological age: 3 months 3 weeks and 0 days
Adjusted/developmental age: 1 month 1 week and 6 days
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10/26/06: Day 104 (Thurs.) Sleeping In My Crib

So proud of Evan! He has slept the past two nights in his crib in his room! Now, sleeping through the night is a whole other matter we're not even close to yet! It's interesting to listen to him through the monitor when he is sleeping. There are times it sounds like he's waking up to demand his night feeding, but it's like he is just dreaming and goes back to sleep. He makes lots of grunts and whines when he sleeps. :-)

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Chronological age: 3 months 2 weeks and 6 days
Adjusted/developmental age: 1 month 1 week and 5 days
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10/25/06: Day 103 (Wed.) Picture Day!

We had Evan's pictures taken today at Sears. We were worried we wouldn't get any good pictures out of him since he isn't a very smiley guy. The pics turned out pretty good. I had a handful of the pictures done in black & white since it seemed to tone down the redness in his cheeks from the cannula adhesive.
















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Chronological age: 3 months 2 weeks and 5 days
Adjusted/developmental age: 1 month 1 week and 4 days
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10/24/06: Day 102 (Tues.) The Bumbo Chair*

We got Evan one of those Bumbo baby seats that allows him to sit upright. Today was
the second time I put him in the seat. At first he cried (when I snapped the still picture), but a few moments later, he was just fine (when I took the vid). He is still small for the seat, so I had to bolster his back up with a towel. He is always enthralled with the ceiling fan, as you can see. Thanks to Sadie-pup for trying to make a guest appearance.



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Chronological age: 3 months 2 weeks and 4 days
Adjusted/developmental age: 1 month 1 week and 3 days
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10/23/06: Day 101 (Mon.) "Maxstoplicking"

Don't get us wrong, we love our dogs...but Max our German Shepherd can be very annoying when he licks his feet all the time. He's always had this allergy problem since he was a puppy when we lived in Germany. My big worry at this point is that Evan is going to think his name is "maxstoplicking" since we seem to say it all the time! It takes saying it at least three times before Max will give you this look and a groan as if to say "I wasn't doing anything".
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Chronological age: 3 months 2 weeks and 3 days
Adjusted/developmental age: 1 month 1 week and 2 days
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10/22/06: Day 100 (Sun.) Triple Digits!

Wow! Evan finally hits triple digits on his age! He's come so far in 100 days! Here's a toast to many, many, many more great days ahead! We hoped to also celebrate a Steeler win today, but we came up short against Atlanta.

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Chronological age: 3 months 2 weeks and 2 days
Adjusted/developmental age: 1 month 1 week and 1 day
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10/20/06: Day 98 (Fri.) 3 1/2 months old!

Today was just a weight-check at the pediatrician's office. I wasn't expecting a big weight jump from Tuesday's appointment in Tucson. Evan weighed 8 lbs. 3 oz. today, a 2 oz. jump from Tuesday. It's always good to see a steady increase in his weight. We didn't try to test his O2 saturation off the O2 since his original reading wasn't at the usual high percentage. The highest the nurse could get was 96%. He usually registers at 100%...the nurse thinks it was because his hand was so cold. No worries!

His next appointment is November 7th with Dr. Ettinger. Since Dr. Vedock is moving away, Evan will just bump over to him. He will probably get his next Synagis shot at that appointment (another $2,000 shot, ouch). He's also getting close to his next round of shots at 4 months. He also is due for his second Hepatitis B shot. I am anticipating that will not be a very happy appointment for Evan. :-(

I tried getting Evan to nap in his play-yard, but he was not happy about that. Instead, he fell asleep in his swing which doesn't look as comfortable to me, but I guess he likes it!



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Chronological age: 3 months 2 weeks and 0 days
Adjusted/developmental age: 4 weeks and 6 days
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10/19/06: Day 97 (Thurs.) Kicking the fish!*

In the last post, I talked about Evan hitting milestones a little later than usual. For the past two days Evan has been hitting a great milestone in my mind. While sitting in his bouncer, he knows to kick the fish to make the music/sounds go! It's a little milestone, but it's something! I was finally able to catch him on video doing it. he seems to be more enthralled by the bouncer now (even though he still doesn't like the vibration).



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Chronological age: 3 months 1 weeks and 6 days
Adjusted/developmental age: 4 weeks and 5 days
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10/18/06: Day 96 (Wed.) Smaller than your average...

Being the parents of a preemie, there are things you have to get used to...such as your child not reaching those growth milestones like the other full-term babies. At least we'll get a lot of wear out of 0-3 months clothes! For instance...Evan's Jumperoo is supposed to fit babies from 3 months upward (or not until a baby has full head control). I had to snap this picture so you can see how he measures up. He's not quite on target for his chronological age...but he's getting there! He can use the Jumperoo with some slight modifications such as putting a box under his feet so he has something to jump off of and tucking some towels down in the sides. Before you know it, he'll be jumping like crazy. :-)





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Chronological age: 3 months 1 weeks and 5 days
Adjusted/developmental age: 4 weeks and 4 days
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10/17/06: Day 95 (Tues.) Tucson Doctor Visit

We were hoping for good news from the pulmonary doctor (Dr. Morgan)...it wasn't the news we had hoped for, but it was good news. We had hoped to hear the words "he doesn't need the O2 anymore"...we didn't. :-(

His appointment was scheduled for 11:30am and we got there about 15 minutes early. We were so happy when they called us right away and they did all the usual stuff (weight/length check, took his temperature). Well, they put us in one of the exam rooms and we waited, and waited. T's stomach growled louder and louder. Then Evan was hungry, so we gave him his bottle.

Dr. Morgan's nurse finally came in about 12:30pm to do all the preliminary paperwork (stuff that we though they should have had already such as his birthdate, when he was discharged from UMC, etc..). She gave us much of the same information we already knew such as not taking him into malls or crowded places to reduce his chance of picking up any funk. She tested his O2 saturation (the thing we have all been waiting for) while he was on the O2. He was maxed out, as we expected. Then, we took the O2 off, held our breath and watched the monitor numbers. He averaged about 92-93% on room air in Tucson. Pretty good! The nurse thought maybe the doctor would allow us to take him off the O2 during the day and put him back on at night to give him a little push.

Dr. Morgan came in with a medical student by his side. Nice guy, very friendly. He checked Evan's lungs and said they sounded great. Yeah! No crackling! I am assuming from the results of Evan's O2 saturation that the doctor did not give us the green light to take him completely off. He would rather keep weaning him down (at least that will save us a little on switching out the O2 tanks as frequently). When we take Evan to Dr. Vedock's for his weight check, we'll have them test his O2 saturation at 1/8 liter (he's on 1/4 right now). Dr. Morgan said he is really close to coming off the O2, but he still couldn't give a definitive time frame. It's all due to altitude at this time. If we lived closer to sea level, he would already be off.

So, our little guy is still tethered to his tank. We have to go back to see Dr. Morgan in December. I would hope by then he would give us the go ahead to remove the O2.

Here's the weight check for ya Joey!!

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** Weight Check: 8lbs. 1 oz
** Length: 20.25 inches
Chronological age: 3 months 1 weeks and 4 days
Adjusted/developmental age: 4 weeks and 3 days
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10/16/06: Day 94 (Mon.) A Day without O2

O.k...I do admit that I can sometimes have little patience for things. (That admission will make T happy). Recently we have been impatient about Evan coming off the O2. If you remember back to previous posts, when he was discharged from the SV Hospital, he was on about .1 liter of O2 (that's almost on room air). They sent him home on .25 liter of O2 just to be sure (since his O2 saturations would drop during feedings and diaper changes). There have been times we have caught him with the cannula totally out of his nose and he hasn't shown any signs of distress.

Last night about 1am, he pulled one side of his cannula off his face (thanks to the new adhesive we used that doesn't keep it on as tight). Prior to him pulling it off, he was making noises through his nose as if the cannula was blocking his nostrils. Since he had the cannula halfway off, I decided to take the whole thing off and see what happened. He was on the apnea monitor, so I had double reassurance that he was still breathing. Well, it has been over 13 hours and the kid is doing fine (no retracting of his rib cage, no straining to breathe), he looks normal as usual. When T gets home from work, we plan on putting his cannula back in since we have that appointment tomorrow.

Tomorrow we have an appointment with Dr. Morgan at the UPH Children's Multi-Specialty Center in Tucson. We're not sure what will happen at the appointment, but we hope he'll get the green light to come off the O2. A lot of what I have read on line says that if an infant with BPD is on O2 during the RSV/cold/flu season, they usually stay on the O2 until the end of the season. That would be very disappointing (especially since Evan doesn't venture out into public places). We'll post more tomorrow after the appointment.

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Chronological age: 3 months 1 weeks and 3 days
Adjusted/developmental age: 4 weeks and 2 days
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10/15/06: Day 93 (Sun.) Steelers Win!

Evan cheered on the Steelers with his new snuggle-ball. Thanks to my advisory board Theta-ladies for the gift!

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Chronological age: 3 months 1 weeks and 2 days
Adjusted/developmental age: 4 weeks and 1 days
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10/14/06: Day 92 (Sat.) We Miss Marianne! 3 Months Old!

Today was the UMC NICU annual picnic at Udall Park up in Tucson. This was the first time having Evan in the car for an extended period of time. He did great! We found out about the picnic via e-mail from Marianne...the NICU forgot to send us an invitation. :-( Anyway...it was great to see Marianne again since she was on vacation when Evan was transferred to the Sierra Vista Hospital. We got caught up on lots of stuff...it was great to hear that some of the babies who were in the NICU for a long time finally went home. We also learned that Marianne is a finalist for the March of Dimes Arizona Nurse of the Year! Fingers crossed she wins!
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Chronological age: 3 months 1 weeks and 1 days
Adjusted/developmental age: 4 weeks and 0 days
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10/13/06: Day 91 (Fri.) 13 Weeks Old!

Friday the 13th! I experimented with Evan napping in his crib in his room. He did pretty good after screaming his head off for about 20 minutes. I ended up using one of the swaddle blankets and that helped to calm him a lot.
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Chronological age: 3 months 1 weeks and 0 days
Adjusted/developmental age: 3 weeks and 6 days
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10/12/06: Day 90 (Thurs.) Visitors!*

I gave Evan some tummy-time today on his playmat. He wasn't too happy about being on his stomach, but did enjoy laying on his back looking at the lights. He was pretty happy until I decided to capture a vid (typical). He's been better about napping in the bassinett in his play yard. We need to get him to sleep in there when T's mom comes to stay (since I don't want to be sleeping with him on the couch forever)! It's still rough getting him to sleep in his crib in his room. I think he's been so used to sleeping on cushier mattresses, that the mattress in his crib probably seems too hard for him.

Evan had a visit from Joe and Deb today. Thanks guys for the baby gifts!

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Chronological age: 3 months 0 weeks and 6 days
Adjusted/developmental age: 3 weeks and 5 days
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Evan always looks so mad...or maybe he's just concentrating too hard

10/11/06: Day 89 (Wed.) A trip out*

Today I decided to get out of the house since the weather was so nice. I had to go to the medical supply store to try to find that stuff to keep Evan's nasal cannula in place. I never knew that babies are people magnets when you being them into a store! The people at the medical supply store were very nice and gave me samples of a different type of adhesive. To buy the stuff the hospital was using would have been over $100 since you have to buy the whole box. Hopefully we'll find out next week if he even has to stay on the O2.

We also went to Target to get some diapers and stuff. Evan was great and slept most of the time in his carrier. I have come to the realization that when you are toting an infant, you can't make quick little trips to the store. And I want to know why does the Target parking lot in Sierra Vista have such a slope? It was tricky getting his carrier out of the shopping cart before the shopping cart scooted away down the parking lot.

O.k...so I was feeling a little adventurous...when I was switching out his cannula, I decided to see how he would do without it. Shhh, don't tell the doctors, but he was doing fine for over 30 minutes without his cannula.
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Chronological age: 3 months 0 weeks and 5 days
Adjusted/developmental age: 3 weeks and 4 days
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Evan having a happy day in his bouncer

10/10/06: Day 88 (Tues.) Another trip to the lab

Evan had to get blood work done again...so I toted him off to the draw station at the hospital. He did great...just cried a little when they pricked his foot. After that, it was like...been there, done that. He's had blood drawn so much that it probably isn't phasing him anymore.

On our way out, I stopped by the medical records office to get a print out of both mine and Evan's itemized bills. It was amazing to see all the drugs I was given the day of my c-section! I was even more shocked that the RSV vaccine that Evan got was over $2,000. He has to get that shot every month for the next year. Costing that much, it better work! ;-)
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Chronological age: 3 months 0 weeks and 4 days
Adjusted/developmental age: 3 weeks and 3 days
Lab Charges: $13.34
Running Total: $368,274.58
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10/9/06: Day 87 (Mon.) Is the well going dry?

Evan is eating and growing like a champ! Just today I noticed his head isn't looking as small as it did. :-) According to his weight, he needs to eat about 400 calories to gain weight.

My BM supply is starting to dwindle and I've resorted to the wives' tales to try to increase my supply: warm compresses, herbal tea, Fenugreek herbal supplements. None of those are making a big difference. We used up all my frozen supply, so we now have to supplement with formula. I have to pump about 3 times to equal one of his feedings, it's getting hard to keep up.

Evan is drinking a formula for preemies (Enfamil Enfasure Lipil). It has 22 calories per ounce versus regular formula which is 20 calories per ounce. We have to adjust the powder to water ratio to make it 24 calories per ounce just to give him a bit more calories. Throughout the day, those extra calories add up. Since the formula is thicker, Evan doesn't drink it down as quickly as he does expressed BM. During the night, he is b-feeding pretty well, but I don't think he is getting enough volume and he ends up being hungry the next hour. I hated having to give him formula, but the well seems to be going dry!
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Chronological age: 3 months 0 weeks and 3 days
Adjusted/developmental age: 3 weeks and 2 days
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10/8/06: Day 86 (Sun.)

Watching the Steeler game, hoping for a win!

O.k...so they didn't win (again)! :-(
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Chronological age: 3 months 0 weeks and 2 days
Adjusted/developmental age: 3 weeks and 1 day
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10/7/06: Day 85 (Sat.) Sticker Shock

Now that Evan has been home for a bit, the medical bills are starting to trickle in. Since my blog is being used as an educational piece for some people, I wanted to lay all the numbers out there for people to see just how much healthcare for a preemie costs. In the preemie book I had, they say you estimate about $1,000 a day...um..not even close in our case!

- The final bill from UMC was $291,708.45
- The final bill from Sierra Vista Hospital was $41,401.47

I added the daily amounts to past posts with a running total of everything. By the time Evan was discharged on Day 67 the running total was $368,096.54. That adds in the AirEvac services, Southwest Ambulance, and the intial bills on his birthday from the SV Hospital.

That amount is sort of mind-boggling. Now is the nightmare of navigating the insurance game. We have Evan covered under both of our insurances, so we're not sure if that will make things harder or easier on us. This amount certainly isn't the last of his medical bills. We have the trips to the pulmonary specialists in Tucson, the normal well-baby visits locally, and his home oxygen services.

When I think of the other family circumstances we encountered at UMC, our case is mild. I think of baby Olivia who has been in the NICU for 9 months or the families of twins and triplets where those families could potentially hit over a million dollars in bills. When you anticipate the birth of child, this isn't even in the realm of one's imagination.

One of Evan's UMC nurses had asked me about the whole preemie birth experience (she was not a mother herself) and it was hard for me to put into words. As the mother of a preemie, you don't get to experience all the joy that comes with giving birth. You really feel like you get the short end of the stick. You go through the ups and downs and the what-ifs. You blame yourself and think back to what I had done wrong during the pregnancy to bring this upon myself. From day one you are in hyper-drive; there were some days I would just forget to eat. It's hard to explain when you are discharged from the hospital still in pain from surgery, but you go home empty-handed since your baby is in a hospital 80 miles away.

We are blessed that Evan has turned out so well. He won't be without some lung problems along the way early on, but he's expected to be just fine as he gets older. He's doing great compared to the preemie growth charts. We so appreciate all the gifts, cards, e-mails, well-wishes, blog comments and hand-me-down clothes (Debbie, you are a saint for parting with all those clothes...I can't thank you enough).

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Chronological age: 3 months 0 weeks and 1 days
Adjusted/developmental age: 3 weeks and 0 days
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10/6/06: Day 84 (Fri.) 3 Months Old!*

Today was bath day for Evan since he was going to visit his favorite doctor today, Dr. Vedock. I managed to give him a bath by myself since T went back to work today. I'll still be home until November 1.

We don't have to go back to the doctor's office for 2 weeks. We're sad that Dr. Vedock is moving away! I have to take him to the hospital on Monday to get labs drawn again.

I was uploading the video I posted on yesterday's blog when Max, our German Shepherd, comes into the room panting. It was the tell-tale sound of a thunderstorm approaching. I had to get a vid of him under the computer desk. This big 80-pound dog is frightened of thunder and when a storm is near, he tries to get under the desk (usually when we are sitting at the desk).
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*Weight check: 7 lbs. 6 oz.
*Length: 20 inches
Chronological age: 3 months 0 weeks and 0 days
Adjusted/developmental age: 2 weeks and 6 days
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This is our early-warning system for thunderstorms






Here was the storm that lasted all of about 5 minutes

10/5/06: Day 83 (Thurs.) Thumb Sucking*

Evan has hit another "milestone" today....if you would call this a milestone...he has discovered how to suck his thumb.
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Chronological age: 2 months 3 weeks and 6 days
Adjusted/developmental age: 2 weeks and 5 days
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Earlier, Evan was trying to hold the monkey's hand. By the time we got the camera out, he started to fall asleep.

10/3/06: Day 81 (Tues.) Going for a walk

We went for a walk today since the pups were going crazy. This was the first time putting Evan in the stroller and he did great. We did the long walk out El Camino Real by the horse farm which is a little less than a 2 mile round trip walk. Evan slept through most of the trip.

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Chronological age: 2 months 3 weeks and 4 days
Adjusted/developmental age: 2 weeks and 3 days
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10/1/06: Day 79 (Sun.) October already!

Hard to belive how fast the months are going by! If you notice in the picture, Evan does not have his oxygen cannula in. We changed out his cannula today and I thought since he didn't have anything on his face, it would be good time for a picture. :-) He did just fine without his oxygen, so hopefully his days are numbered on the O2 tank. We won't know until we go to the pediatric pulmonary clinic in 2 weeks in Tucson. There have been times where he is sleeping and he moves the cannula completely out of his nose, and he does fine.
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Chronological age: 2 months 3 weeks and 2 days
Adjusted/developmental age: 2 weeks and 1 day
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