Thursday, October 04, 2007
Recall Info Directly to Your Email
Not everything is always mentioned in the news, so it doesn't hurt to be overinformed.
Tuesday, September 25, 2007
Child's Voice in the Trib
http://www.chicagotribune.com/services/newspaper/printedition/friday/chi-deafed_21sep21,0,5514522.story?page=1
Saturday, September 22, 2007
Peanut Piñata! Olé!
- Brian and Charlotte starting taking swim classes together. Charlotte didn't exactly like the first two sessions (i.e. she cried the whole time), but by the third one she actually got dipped under the water and tried to catch a rubber ducky. We do not accept quitters on this team (especially after mom's paid for it)!
- I'm hanging on by a string in my Chemistry class. The scariest part is that people are actually come up to ME asking questions in our lab section. Either I've perfected the art of looking like I know what is going on, or the intelligence level in my class is REALLY LOW. I'm leaning towards it's a combination of both. I have my first test next week. Eek!
- Charlotte's OT (Occupational Therapy) sessions have been really neat. She started in July and the OT is focusing on the senses in the order that they develop in utero. So the first thing we've been working on is the vestibular sense (motion). Lots of spinning and swinging. The way her OT described the therapy is that since Charlotte missed out on so much time in the womb, we have to go back and make sure that everything that would normally develop in utero is okay now. Charlotte's been loving the spinning and swinging, so we've been having a great time with it!
- We found out Peanut's final results from the ABR in August. Her right ear has a moderate hearing loss and the left ear is mild-to-moderate. Basically, according to her DTH, she's at the lowest level that the state will allow for treatment. I think that's great news!
***Final note***VERY IMPORTANT!!! Davy Jones is playing in Hinsdale on Fri, Sept. 28th for only $5. Will anyone please go with me??!!
Monday, September 03, 2007
I've Always Wanted To Fly
Saturday, August 18, 2007
us we visited the Wisconsin Dells . Yes, it's a bit cheesy, but it going to be so much fun when Peanut is older and we can go to some of the water parks and go on the roller coasters. This time around it was more about walking up and down the "boardwalk". Another day we visited The House on the Rock. We still don't know what the story was about that place (some guy built some house on a rock and he had a lot of eccentric collections), but it was really cool and we have already planned a re-visit next year. Above is a pic of Brian and Peanut in the Eternity Room. See how it seems like the room is going on for ever and ever and ever ..... The freaky part was that this room has no support underneath. I got out of there pretty quick when I realized that.Now for the part you've all been waiting for .... Charlotte's ABR results!!! Charlotte had her hearing test yesterday at Children's Memorial Hospital. We drove down yesterday morning only to find out that Eric and Kathy on the 101.9 morning show were having their annual 36 hour fundraiser in the hospital lobby. It was kind of neat that they were there on the same day, but it was a zoo down there! I had several conversations with the Anaethesiology Attendings at both Loyola and Childrens regarding how to approach Peanut's procedure - sedation or general. It was ultimately determined that general anaethesia was the way to go, but I was still very nervous. She still has BPD and she's still so small, so seeing the doctor carry my baby away into the operating room was horrific for me. But all of my worries were for naught, and Charlotte came out of it only a little hungry and ........... (drumroll please) ....... diagnosed with a moderate hearing loss!!! Peanut will still need the help of her hearing aids and she's still going to need therapy and Child's Voice, but the road will be much easier for her than originally anticipated. She can hear more than we were told after the initial ABR, but it seems that she's missing out on most of the speech sounds around here. I get the impression that unaided she knows people are talking, but the clarity isn't there. Regardless, it's fantastic news for her. And I have to boast, she was such a trooper. She only cried when she first came out of surgery and she was hungry. Other that than she didn't fuss when they took blood, or she couldn't eat for 8 hrs, or she couldn't take a nap, etc. I KNOW I wouldn't be that good. She's amazing.
Thursday, July 05, 2007
Mid-Year Team Hellyer Audit
Tuesday, June 05, 2007
The Thrill of the Cicada is Over!
Sunday, May 20, 2007
Now Playing: Charlotte Unplugged!
Monday, April 30, 2007
Busy, Busy, Busy!
Monday, April 16, 2007
Where's Summer!?
Thursday, April 05, 2007
Smile! You're on Candid Camera!
Medical update ... Peanut went in for her second ABR last week and they found the same results as the first test - borderline moderate/severe hearing loss in both ears. The doctors and audiologists were very adamant about her getting hearing aids as soon as possible so that she doesn't miss out on too much. So, we have an appt with Easter Seals next week to have a hearing aid evaluation. Hopefully by the end of April she'll have both hearing aids. I'm anxious to see her response when she finally has the aids. Will she be scared by all the noises, will she be curious, will she try and turn them off when I talk? We'll just have to wait and see.
One of the big challenges we'll be facing is keeping the hearing aids in her ears. She's getting to the point where she realizes she can pull the tape off of her oxygen tubing, so she's not too far away from being able to pull a hearing aid out of her ear. The state is sending over a DTH (Developmental Therapist for Hearing) twice a month to help us by offering techniques to keeping her hearing aids in and to give us some general guidance on how we can help Peanut to handle all the new sounds she'll be experiencing. The DTH will work with Charlotte for the first year and then a speech therapist takes over for as long as needed. I guess the immediate focus is to work on the hearing side and then later work on the verbal.
I signed up for the Intro to Psych class, which starts in mid-June at the local Community College. When I went to register online I kept receiving error messages that they had already received my application. I thought maybe I was going crazy - did I already register and just forget? Turns out they had me on their database from a summer science program I did there when I was 12! So, of course, it took me days to get them to change my info on their system and finally get me registered.
That's all for now.
Friday, March 23, 2007
Happy Spring!!
And for you Southern Hemisphere folks, Happy Autumn!
Remember that skinny little thing in the last bathtub shot? Well, check out this chunky monkey! 9 1/2 pounds, baby!! Look at that gut! Although, it's possible that she was a little gassy that night. She also looks a little more relaxed this time around.
Yes, I've been a bit slack with the posting lately. So let's see what's been going on .....
Charlotte had her Early Intervention evaluation in the beginning of March. There was an Occupational Therapist, Physical Therapist, Speech Therapist, Developmental Therapist, the Coordinator and myself all scrunched into Charlotte's room at once. The only person who thought she needed some ongoing treatment was the Physical Therapist. Nothing major, just working on keeping her head looking in both directions and getting her neck stronger. Nothing that doesn't affect full-term babies as well. So at some point the state is going to send over a Physical Therapist to work with Charlotte on a regular basis. Luckily I work with her on my own, because it appears that the state doesn't work too fast. Surprize - Surprize.
Aunt Kari came in from St. Louis for a visit in early March. I even got the chance to go out with her for a bit and do a little shopping. You know you've got a crazy life when you're excited about buying yourself pajama pants and slippers. :-)
We finally got to see the GI (Gastrointestinal) doctor about her reflux and he seemed to think that she was doing fabulous; and he said she's much better off than most of the other babies he sees (I'm feeling pretty confident that that was the proper use of a semi-colon. Feel free to challenge me). At least it doesn't appear to hinder her eating and sleeping too much, so in that respect she's doing well. I'm just eagerly anticipating her outgrowing the foaming at the mouth, gagging, and waking up unable to breathe. That will be a good day for Peanut. However, I was happy to find out that the doctors are not going to take away her heart and O2 monitors until we feel comfortable with that change. Personally, I think she's going to have to be "episode-free" for quite awhile before I feel comfortable having her be without them. Maybe when she turns 18 and goes off to college. But seriously, it's comforting to know that I can make the call on that.
The Ophthalmologist saw her again in mid-March and he seems to be under the impression that while the retinopothy of prematurity (blood vessels growing all crazy) is not getting any worse, it also might not get any better, which he has assured me will not affect her eyesight in the long run. So we will continue to go back every couple weeks just to be sure. I'm hoping in the next month or so he gives us the sign-off and then we can cross one doctor off of our list.
Only to be replaced by new ones .... the audiologist and speech pathologist. Or is it speech therapist? I don't know the difference at this point. I think this is where I need to go back and brush up on my terminology, like "frequency" and "tone". Who knew that I should have actually paid attention in Music Appreciation class (or shown up for that matter)? Charlotte had her Audiology follow-up test yesterday. This was the two-hour long ABR (auditory brainstem response) test for which she needed to be asleep. The doctor put several electrodes on Peanut's head that read her brain waves as he played different sounds through little earplugs. As far as he can tell at the moment she has borderline moderate/severe hearing loss in both ears. We need to go back soon for another ABR so they can test a few more frequencies and redo some of yesterday's testing to check for accuracy and/or hearing loss stablilization (i.e. is it getting worse?). At that point it will be determined what should be pursued next. He seemed pretty confident that with an amplification device (hearing aid(s) or maybe implants down the road) she should be able to hear and speak pretty normally. So, it appears that we have a long road ahead of us, but I've been saying for awhile that if this is the worst thing that Charlotte has to deal with then she's pretty lucky. There are a lot of babies that come out of the NICU much worse off than she is. We can deal with this.
Brian's been busy with work and I'm busy trying to figure out what to do with Peanut in between naps and how to get her to sleep through the night. She's still on the O2. We were able to successfully wean her down to 1/8L, but she doesn't seem ready to take the next step down to 1/16L. I've tried it a couple times and she just doesn't respond very well. Maybe she needs to be a bit stronger. No need to push her. She'll come down when she's ready. The weather has been nice lately so we've been able to get out for a couple walks.
I decided this past weekend that I want to go back to school and take a couple of classes to prepare myself for nursing school. I think I'm going to start this summer and take something low-key like Intro to Psych. The hospital where Charlotte was at has an accelerated nursing program that lasts only 12.5 months for people who already have their bachelors degree, but there are 7 prerequisites I have to take before I can even apply. Stuff like microbiology, organic chemistry - all the classes that I made efforts to avoid when I was in college. So we'll see where this takes me, but I'm excited about the challenge! God you'd think that all the stuff I've been exposed to over the past year would count for at least a couple credits, no?!
I'd like to ask a favor from everyone .... There was a set of triplets born at the hospital two weeks before our kids were born and one of them is still there putting up quite a fight. She lost one of her brothers early on, and her other brother passed away two weeks ago. This little girl needs some positive energy so she can get stronger and get home with her parents. So, if you can please keep her and her family in your prayers I would really appreciate it. Thanks.
Some people have asked if we are open for visitors and the answer is Yes! Please come over ... just as long as you don't have a cold, anyone you live with doesn't have a cold, you or anyone you live with hasn't had a cold recently, you or anyone you live with or anyone you know has never had a cold ... no, we don't have to go that far, but as long as you and yours are healthy please come on by!
Monday, February 26, 2007
Story Time at the Zoo
Friday, February 16, 2007
How About Some More FAQ's?
Here's a pic of Charlotte and her peripherals. As you can see there are oxygen tanks to the left of her bed and on top of the purple crates are two monitors. One monitor is connected to her foot and measures her oxygen, while the other has two sensors that go on either side of her chest to keep track of breaths/minute and her heartrate. We don't necessarily need to have the oxygen monitor on at all times. The hospital recommends checking her oxygen saturation 3 times/day, but since she still holds her breath every now and then and she still gags with the reflux, we feel better having it on all the time. There's been a couple times where the oxygen monitor has alarmed way before the heartrate monitor would have gone off, so we were able to catch her having a problem before it really became a problem. The oxygen monitor is going off less and less as the days go on, so as soon as we've had a few days without any problems we'll feel much better about only checking her periodically through the day.
When we leave the house for doctor appts we use small portable oxygen tanks that last up to 6 hours. They're small enough to fit in a backpack. But while we're at home she's pretty much stuck in her room at all times. Even during bath time.
Charlotte's been sleeping in a bouncy seat inside her crib the last few days to keep her elevated to help with her reflux (thanks for letting us borrow that Aunt Patty!). We tried elevating her mattress, but either she kept slipping down or we had to put so many blankets in there to keep her in one place that the bed was starting to look like a SIDS nightmare. She was sleeping in her car seat for a few days, but I just didn't like the looks of that. I couldn't shake the feeling that being scrunched in that seat for so many hours per day was stunting her growth.
2. Did you use all that breast milk in the freezer yet?
Nope, still working on that. We should be done with it in about two weeks. Then it's on to that yummy formula.
3. Is she sleeping through the night?
Nope, still working on that. She 's only getting up once during the night since she's still kind of small to go that long without consuming any calories. Keep in mind that even though she was born in October, Peanut is really still a newborn. Doctors will use what they call "adjusted age" to determine where she should be developmentally until she's around 12-18 mnths. Adjusted age is calculated from my due date, so being that Charlotte was due on January 30th her adjusted age is currently 2 1/2 weeks. Sometimes this can be a little tricky because in some respects she's older than 2 1/2 weeks because she's been around for awhile (i.e. she's already on a schedule and eats more than your typical newborn), but in other ways it really is like she just came out of the womb (i.e. she still has very limited awake time and we get excited when she lifts her head up).
4. How much does she weigh?
I ask every other new parent that question. I think I'm obsessed with weight now. She's around 6 1/2 pounds.
5. How are her eyes?
As of this past Monday they are starting to get better! Yay! So it's starting to look like she won't need the laser surgery. We're not totally out of the woods yet, but the doctor said the blood vessels are starting to recede and maybe we'll only have to go see him three or four more times.
6. How long does she have to be on oxygen?
Depends on how quickly her lungs heal. Her lungs were damaged from both the ventilator and from just being premature. As she gets stonger and has more reserves (i.e. fat) her lungs will be able to heal faster. From what I've gathered from her home nurse, Nancy, she will need to be stable for a few days on her current O2 level before we get the OK from her or her doctor to start weening her down. Brian and I are allowed to go higher than her current O2 level if she's having any problems, but we're not allowed to go lower without authorization from a doctor or nurse.
7. How are YOU guys doing?
Pretty darn good. Loving having Peanut home. We seem to be getting ample sleep. Brian and I switch off on the pm feedings so we each get a relatively decent stretch of sleep. My sleep has been a little weird over the past few days as I'm getting used to my new mouth guard. Turns out that I don't have enough of an overbite and since I clench my jaw when I sleep this can result in cracked or chipped teeth (which actually did happen during labor). Let me tell you, nothin' says SEXY like a mouth guard. I don't know how I feel about it yet, but everyone whom I've talked to who has one swears by it.
I don't think I told y'all, but Brian became a U.S. citizen in January. In the grand sceme of things it really doesn't change much, but hopefully we've got another Democrat voting in '08! And no, he didn't have to give up his NZ citizenship. He had to "renounce" it during the ceremony, but he didn't have to give up his passport or anything. Technicality.
If anyone has any other questions please post them in the comments section and I'll do my best to give you an answer.
Thursday, February 08, 2007
There's 6 Pounds of Lovin' Sleepin' in the Other Room!

She's here, she's sleeping, AND she's 6 pounds! Peanut came home on Tuesday (2/6) and so far (knock on wood) everything has been going great. She's still suffering from acid reflux, but a lot of babies have that and we'll just have to deal with it until she grows out of it. Here's a pic of her sleeping in her crib right after we brought her home.
The doctors did a bit of "fine tuning" while Charlotte was at the hospital. They put her on a few new medications to help the reflux and to help her digest her food a bit faster. They did a scan at the hospital where they put some radioactive stuff in her milk and then took x-ray shots of the milk going down as she drank it. They were able to determine that she wasn't having problems drinking the milk, but she also wasn't digesting it very well. It seems that three hours after a feeding she still had at least half of the previous feeding left in her stomach, which can add to the whole reflux problem. So now she's taking some meds to help her digestive tract move a little faster. Unfortunately, it makes her sound like WW3 is going on in her stomach. I'm just hoping that we're not creating a problem by solving another!
Having Charlotte in the hospital was a good opportunity for me to get my confidence back when it comes to feeding her. She really scared the crap out of me when we had her home before, and even when I would feed her at the hospital I would tense up. I tried to feed her as much as possible over the last two weeks and I think it really helped. Granted, she still holds her breath every now and then, but now I'm more confident that a couple good whacks on the back are going to wake her up. "Wake up, Missy!!"
Charlotte is still on oxygen and needs to be hooked up to the apnea monitor at all times. This can be a bit annoying sometimes because the oxygen confines her to her room. Hopefully she won't have to be on the O2 for too long. I'm thinking maybe 2 months, or so.
It looks like our social life is going to consist of doctor appointments and home nursing visits for awhile. But I encourage everyone to please feel free to give me a call if you wanna chat! I have a feeling that cabin fever might hit pretty soon! I'll post more pics of Peanut in the next few days.
Wednesday, January 24, 2007
Peanut was in Da House (for a couple days)
When we brought her home I was so excited to see how the dogs were going to react to her. They could have cared less. They were not impressed. They gave her a sniff and that's pretty much the last interaction they've had.
Things were going great the first couple of days. She came home with a feeding tube, but we removed the tube on Sunday since she had been taking all of her feedings by bottle. She also came home on oxygen, which comes with an apnea monitor that lets you know if she's a) not breathing, or b) her heart rate has gone above or below predetermined levels. She's also on a monitor that measures the oxygen saturation in her blood. That monitor goes off if her saturation falls below 90% ("desat"). This means that everytime she holds her breath to take a poop (which seems like it happens every few minutes) the alarm goes off. It's reassuring to have the monitors attached to her, but of course we still check her every few minutes to make sure she's OK.
Things started to go not so great on Monday when she began to desat each time I fed her. She never did it for Brian, though. What's up with that? The first couple times her saturation went down to the 80s, then it started going to the 70s. On Monday night she had a bad episode where it fell into the 30s and she turned blue. That's definitely something that no parent should ever have to see. We were able to stimulate her and bring her back to normal without doing CPR, but we were both close to starting. At that point, we decided that maybe she needed a rest from the bottle, so we put a feeding tube in. We gave her a few feedings through the tube and things were going well until I went into her room the next morning and she had the tube in her hand and she was waving it over her head like, "Look what I have!". We took her to the pediatrician on Tuesday and she told us that the desats were classic signs of acid reflux. From what I've heard, acid reflux is common among babies and people used to think it was just gas or colic. In preemies it can be even more of a health hazard because their nervous systems are so immature. When the acid comes up their espophagus their bodies basically shut down - their heart rate slows and they stop breathing. She's on medicine for reflux, but perhaps not enough or not the right medicine. We decided to try a couple different things and see if that worked, but when she had her next feeding at home she had another desaturation to the 40s and turned blue again. So we called her pediatrician and she arranged for us to take her back to the NICU for oberservation. As soon as I heard that she was going back there my stress almost completely went away. I want my little peanut home, but not if she's going to be doing that everytime I feed her. It was getting to the point where I was scared to death to feed her.
She will most likely be in the NICU for a few days. They are going to try and determine if acid reflux is the culprit or if maybe she's having issues with aspiration (aka "going down the wrong tube"). It's already weird not having her here, but I know she's in a safe place and she's in good hands.
Brian went back to work today after taking a couple days off to help get Charlotte settled, and it sounds like he's really enjoying his new position. He seems much busier than he was before, but he's gotta keep busy so we can afford for me to stay at home and eat bon bons. Where do you even get bon bons? Do they still make them?
I think that's enough drama for one post.
P.S. She's 4 pounds, 11 ounces.
Friday, January 19, 2007
False Alarm! No Peanuts Here!
Charlotte's eye exam was fine last week and the doctor even said he thought she wasn't going to need the laser surgery at all. That surprised me. The blood vessels had been growing rapidly, so I was sure she was going to need the surgery. But she had another exam on Wednesday of this week and he still thinks she's doing OK. She will get checked on Monday and every week after that for the next few months. Hopefully the verdict will remain the same.
So we may have dodged the eye surgery bullet for now, but we didn't dodge the hernia bullet .... last Thursday they found a hernia on the left side of her abdomen and she was scheduled for surgery on Tuesday (1/16). The surgery went fine, and they sewed up her right side as well, as a preventative measure. So no tub baths for a few days, but we're all about sponge baths!
Keep tuning in, because hopefully over the next few days I'll have some pics of me rocking with little Peanut in her room!
Thursday, January 11, 2007
***DISCLAIMER*** Cross your fingers while reading!!

***Before you read this post I want you to cross your fingers, knock on wood, rub your belly and tap your head .... anything and everything you need to do to make sure we don't jinx anything.***
Pending the outcome of her eye exam today, Peanut is scheduled to come home on Sunday. As in January 14th. As in three days from now. The doctors have been watching her eyes weekly to make sure that the blood vessels in there are growing properly, which they're not. When they start to grow all crazy they can attach themselves to the retina and even detach the retina causing blindness (that's why Stevie Wonder is blind). If the blood vessels don't stop growing she will need laser surgery on both eyes to stop the advancement. For that surgery she will need to be put on both the paralyzing drug and the ventilator, so she would need to be in the hospital for a few days. Therefore, if they think she is going to need that surgery in the very near future there's no sense in sending her home only to have to turn around and readmit her in a few days. As much as I'm itching to have her home I would rather wait until she's ready. The doctors are also performing a sleep study on her today to see why her oxygen saturation still drops every now and then. They put a bunch of straps and probes in and on her and watch her for 12 hours to determine if she's having problems with acid reflux or apnea. Both of these can be controlled with medicine - prilosec for the former and caffeine for the latter. And yes, I already asked, and no, she can't have coffee. So, in the next 24 hours after her eye exam and sleep study we will know more. Either way, she should be home within the next 1.5 weeks (again, knock on wood).
In the last two weeks Charlotte has been growing by leaps and bounds. Yesterday, she weighed in at 4 pounds, 1 ounce. She's also taking almost all of her feedings by bottle. Getting all that sucking, breathing and swallowing coordinated is difficult. One of the nurses suggested that I try to suck on a bottle to see just how difficult it really is and HOLY COW! Give it a try if you ever get the opportunity. It's really hard! I actually hurt myself trying to get something out of the nipple.We did get a bit of not-so-good news the other day when she failed two hearing tests. The tests weren't very accurate as far as what she could and couldn't hear, but I was told that she probably had some degree of hearing loss. HOWEVER, after several requests I was able to get a ENT doctor to have a look at her ears and she has fluid in both canals. So, we're hoping that that is the culprit and she's been put on antibiotics and we'll bring her back for a retest in a month. Like everything else, we'll just take it as it comes and keep our fingers crossed.
Brian is going to be starting a new position with his company over the next few days and he's pretty excited about that. His territory will still be close to home, but he's going to be adding some new clients to his repetoire and he'll be focusing more on sales. The plan is for him to relinquish his pick-up for another smaller vehicle at some point, so we're a little bummed about that.
Speaking of vehicles, I have a 2001 Chevy Venture Warner Brothers Edition minivan for sale that seats 7. Let me know if you or anyone you know might be interested.
We hope everyone had a safe and happy new years! We celebrated the new year with Charlotte at the hospital, however we were on our way home to bed by 12.05am. I guess the days of drunken debauchery are over for awhile.
Friday, December 29, 2006
Peanut's First Christmas

It's sad what the nurses and I will come up with for entertainment purposes. Isn't she cute??
Whenever I see this pic of her and her teddy bear I think of that doll back in the eighties that was called My Buddy and the song that went with it ... My Buddy ... My Buddy and Me!!!! I'm going to be singing that all day now. I hope you will, too.
