Blessed Bailey

Bailey Has:

2010-09-04T00:00:00.000-05:00

Seen her pediatrician twice. We had a suspected infection that wasn't there plus her 15 month visit. She weighed in at 13lbs 4oz (7oz more than she was 2 weeks prior) and measured 27 inches.
Met a new ENT in town who talks very fast. I missed this appointment with a migraine and Blaine said he missed most of it because the doc was talking so fast. What he caught - a new bronchoscopy, meetings with 2 surgeons (one here and one in KC).
Made an attempt at another swallow study. She wouldn't sit still. Radiation = bad news for your brain. We were told we could try some colorful, smooth foods by mouth. If we see any funky colors when we suction, we know to stop.
Seen a new Occupational Therapist for her right hand and its radial deviation. New order to wear her wrist brace through the night and get x-rays as soon as her pedi thinks it would help. Possible surgical intervention may be necessary in the distant future.
Seen a Physical Therapist 4x to work on strengthening the right arm and trying to figure out why she still is not walking on her own. My answer - she is stubborn. PT still has no answer.
Had a hearing screening. It lasted 2 hours. We have to go back in 2 weeks. They are still seeing conductive loss with no reason to believe it is permanent (read: when her outer structure is fixed, she will be able to hear fine). She hears high pitched sounds at low volumes but low pitched sounds have to be louder.
An appointment with a geneticist here in town. Kinda. Technically we will be with a genetic counselor and the geneticist will be somewhere else watching us on TV or something.
Not changed over to big girl formula. We have to figure out WIC and where to get Pediasure in bulk; so we are waiting until we get back from vacation. Plus she just started gaining weight.
Started planning for her first vacation. Or her mom has, at least. I have a list of everything she could possibly need for 2 weeks. It fills up a sheet of paper. We are headed to PA at the end of the month for my sister-in-laws wedding and decided if we are driving that far, we are staying awhile. We have a couple new toys, books, and Disney movies for the kiddo to enjoy. Hopefully that will be enough?
Done some developing and decided she would let us in on a secret. She can crawl. Nice, right? She has only done it a few times but it seemed like she knew exactly what she was doing. She also understands the word "no" and what "come here" means. She signs "dad" and "dog", and makes the signal for "touchdown". She knows the dog gets a treat when he comes in from doing his business and will point to the can if she thinks you are going to forget it. I think she has started fake laughing. She knows the phone goes to your ear and knows the remotes work the TV. She shakes hands, gives high-fives, and wiggles her finger when we tell her to come to us. She is walking like a crazy woman - as long as she has a hand on something. Bailey loves the zoo and got really excited when she saw the lions, meerkats, and gorillas today.

All since my last post. And did I mention she is 2 days from being 16 months old?

ENT Fail

2010-06-25T21:45:00.000-05:00

Bailey had an appointment scheduled for Monday the 28th with the ENT she saw at The Children's Hospital in Denver. We cancelled it. We thought we had scheduled a bronchoscopy but I guess that's not what happened. We called to get some details and were informed that it was just a consultation but a bronch could be scheduled at a later date, assuming the Doc thought it was necessary.

Blaine and I discussed it and decided that it didn't make sense for us to drive 16 hours round-trip plus a hotel stay for a consultation. Not to mention that this doctor only works on Mondays, which means if she was going to have a bronch, it would be at least a week later. We can't afford to drive out and stay and then come back a week or so later. Especially when we believe there is nothing that can be done surgically yet.

So we have decided to checkout some ENT's 5 hours closer to home in Kansas City. I just have to start researching those doc's and figure out which one I would like to see Bailey. Add that to the new nutritionist and geneticist we need to see, and it could be a busy few months for all of us.

Soccer Fan

2010-06-10T19:20:00.000-05:00

No big secret to those that know us - we LOVE soccer. Bailey actually witnessed at least 15 soccer games during her first 8 weeks of life, including 6 while she was still in the NICU. Since that time, she hasn't missed a US national team game and has lots of others thrown in for good measure. So, with the World Cup starting tomorrow, I decided to try Bailey out in a few of my jerseys. The result:

Adorable. And while she likes Gianluca Zambrotta and Arjen Robben, her heart lies with the US team and Jozy Altidore.

Moving

2010-05-14T01:46:00.002-05:00

So about 2 weeks ago, we decided to take a look at our budget. And then we remembered that our lease is up on May 21. So we found an upgraded place to live and put down a deposit on Tuesday. We have 1 week to pack and have everything out of here and into the new place. If this is what being a responsible adult gets me, I'll keep my mouth shut from now on.

A birthday party picture:

One Year

2010-05-06T07:45:00.000-05:00

To our beautiful Bailey,

How is it possible you have been alive for one year? It was 8:45am when we found out you would be making your arrival 5 weeks earlier than planned. After heading to the hospital (without passing go and collecting $200, as our MFM said), I was prepped and headed into surgery. You made your arrival quietly at 11:00am. They quickly called your daddy back and told him you were in trouble and would need to have a tracheostomy immediately. It was 2 hours before they wheeled my bed into the NICU so I could see you. Seeing you laying there, still not awake from the anesthesia, was heartbreaking. I only got one good look before I couldn't see through my tears. You were the most beautiful baby I had ever seen. You met your Grandma Hinderliter about the time you started waking up. I saw you twice more on your birth day and each time I saw you, you were more beautiful than the last.

Your daddy and I have fallen more in love with you every day. Your smile can literally change our day. Speaking of your daddy, you have him wrapped around your long sausagey fingers. Anything you could ever want or need, he jumps to attention. Watching your personality develop has been absolutely amazing. You know just what you want all the time and whoever is in the way better look out! You may not be able to "voice" your opinion, but you have more than enough facial expressions to tell us just what you are thinking.

Bailey, you have completely turned our lives upside down in a good way. You have made us stronger together and taught us to love on a totally different level. We are so excited for your 2nd year and everything you have to teach us.

We love you more than we could ever say, Bailey. Happy Birthday!

5-5-09

2010-05-05T15:25:00.000-05:00

Although I didn't know it, I was in the middle of my last day pregnant with Bailey. I so clearly remember this day. In fact, I remember telling Blaine that if I ever wanted to have more kids, he needed to remind me of this day. Unfortunately, my memories from that day are not good. I spent the whole day in bed, as I had the 5 days before trying to stretch Bailey's time inside. After weeks of not being able to breathe and not being able to stand up for more than 5 minutes at a time, I had what I would consider the biggest breakdown I've ever had.

After Blaine got home from work, I made an attempt to shower as I had a high risk ob appointment the next day. It didn't go well. I ended up sitting in the shower for over an hour balling my eyes out. I couldn't remember the last time I felt Bailey kick (because of all the extra fluid) but my doc told me I probably wouldn't and not to worry about it. We had bought a stethoscope the week before and Blaine spent 15-20 minutes every night trying to hear whether or not her heart was still beating. On that night, I was convinced she was gone. Blaine tried and tried to convince me she was ok and I would see in the morning that she was fine. I wasn't having it. I begged him to get my regular ob to take her out. Somehow he convinced me to wait until we were scheduled to see her on 5-7. Of course, we found out at the MFM doc the next day that she was still with us but she might not have made it another day...

Quick Hits

2010-04-15T08:46:00.000-05:00

Bailey is asleep! And not on me!

I'm really late with Bailey's 11 month post and I'm not sure I will get to it until next week.
Birthday plans have been made and I will share late next week.
Bailey has started this adorable squinting when we squint at her.
The dog is in the doghouse big time. He's pooped in the same room 3 times this week and helped himself to my dinner on Tuesday.
According to a brilliant receptionist at Bailey's doc, her 12 month checkup has to wait until she is 12 months old. Oh, Really? Because I was thinking about making it tomorrow. Thanks for thinking I'm stupid.
What is happening late next week that will allow me to blog? Blaine's mom is coming to visit! A big sorry in advance to Sheri - the room the dog has been doing his business in? Yep, that's where you are staying.
We have a crazy cleaning/shopping/cooking schedule set up for the next week to get us ready for Grandma L.'s arrival!

And the dog just woke Bailey up. Awesome move, Trebek. Thanks.

Still Here

2010-04-03T23:51:00.000-05:00

We are alive and well! Things have been pretty busy around here and I just don't have the energy to sit down and blog after the nurse gets here at 11:00pm. I'm still hoping things get back to normal at some point or I get used to the new normal. I will leave you with an after bath picture:

Therapy Updates

2010-03-15T22:16:00.000-05:00

A quick recap: Our early intervention program, Rainbows United, is responsible for all of Bailey's therapies unless we feel Bailey isn't getting the care she needs. Financially speaking, Rainbows has been having a rough time of it lately. It has been one of the biggest state budget cuts this year. We are currently able to schedule appointments twice a month. Bailey's team leader is a Speech Therapist. She is able to help with any sign language that we would like to know and she is "responsible" for recommending any other therapies she feels Bailey would benefit from, such PT, OT, Nutrition, Audiology.

Bailey was fitted for a right wrist brace in November(?) by Occupation Therapy. She has some radial deviation(her hand turns in toward her thumb) and we understood that the brace was meant to correct the problem which you can see here:

We didn't feel like the brace was doing any good so we asked to see OT again. The brace was adjusted a little bit and then the bombshell was dropped. I guess at this stage in her physical development, the deviation is permanent. Without an x-ray, she believes there may be a bone deformity that is causing the deviation. I also asked about her thumb on the same hand, as I felt it is seriously loose. I'm double jointed but she can have her thumb lay on the back of her hand and not be bothered by it! I was told it was not normal and there was nothing OT could do.

We saw physical therapy at the end of January and will be seeing them again next week. Bailey is at a higher risk of scoliosis because of her extra vertebrae. Our team leader noticed that Bailey was always rolling to the left and thought it might be an early sign and something we could correct easily. PT was very helpful. Scoliosis was not one of the things on my radar and actually had almost forgotten about the risk. We need to watch all of Bailey's new skills and make sure that they happen symmetrically. We are fighting her left leg right now when she stands. She wants to turn her foot out and we have to correct it and put it back in place. I'm glad she is coming back next week as I would like some tips on helping Bailey go from her knees to a stand.

Our leader brought a booklet that is used to measure communication and interaction of infants and toddlers. I started filling it out but some of the stuff (Is your baby putting 2 syllables together?) doesn't really apply. If I leave out the vocalization points, she is doing about half of the stuff on the 9-12 month list, which is where she should be at 10 months. We have added the words 'silly', 'good', and 'bacon' to our sign language library. You may laugh at bacon but if she is going to be a part of this family, she needs to know it!! Speaking of bacon, we were supposed to she the Nutritionist but see never showed and never called.

So that's were things stand right now. Hopefully, next weeks appointment will be productive in helping Bailey stand up on her own!!

Tidbits

2010-03-11T22:31:00.000-06:00

I finally called the nursing agency on Wednesday morning. I laid out my concerns and decided to compromise. She is being talked to by HR and will be back on Friday night. If I am still not happy, I can call Saturday morning and tell them "no, thank you". The one other nurse we have will take over Sunday-Thursday from 11:00pm-7:00am until they find someone for Friday and Sunday.
I am somewhat worried about this nurses attitude on Friday after being reprimanded.
I (and my commenters!) were right in thinking that what Blaine and I want, within reason, is what the nurses are to do.
Spring Break starts Saturday! We are going to pick up Casie early Saturday morning!! Hurray!!
I love March. The hope of impending spring comes to me by way of college basketball. What's that, ESPN? You want to have basketball on for 14 hours a day? Well of course I will watch all 14 hours! Selection Sunday, much like Super Bowl Sunday, should be a recognized holiday and should be treated with the respect it deserves. Rock Chalk Jayhawk! By the time March Madness is over, there will only be 66 days until the World Cup starts up!!
Bailey's 1st birthday is exactly 8 weeks from today. Our little kiddo is growing up so fast!

Jinxed

2010-03-08T21:12:00.000-06:00

Perhaps I spoke to soon. Maybe I am just extremely unlucky. Our shiny new nurse started last night. And tonight is her last night. This time, it's our choice. I wanted to make her leave last night but Blaine has convinced me to give it one more night to see if things are better. My high hopes are gone. Along with my sleep pattern getting back to something resembling a normal human being. I'm not sure how picky we(in the royal sense) can be with Bailey's potential nurses. On one hand, I feel like they should be an extension of us with actual medical training. But how much of our parenting style can we expect them to adopt?

We have become cloth diapering, non-crying it out people. Crying it out is fine for some people but not for us. There have been a number of studies that have shown crying it out can lead to varying levels of brain damage. Those studies combined with the trach makes it impossible for us to ignore real cries. Cloth diapering has saved us around $200 in 3 months. Not only is cloth diapering better on our wallets, but it is better for Bailey and the enviroment. I feel much better knowing all those chemicals are not on her little heiny and at the same time, we are decreasing the amount of trash we produce. To this point, the nurses we have had have been very cooperative with these 2 things.

The second she walked in the door, I had a bad feeling way down in my gut. This woman was, to put it nicely, older. I worry enough about my child, I don't need to be concerned that every noise I hear could be the nurse falling and breaking her hip. It took her a solid 5 minutes to make it up the stairs. We started telling her a little bit about Bailey and she seemed very cold and uninterested. She interrupted to tell us how long she had been a nurse and that her husband died 2 weeks ago. She went straight from that statement to asking for medical information only about Bailey as that was the only info she needed.

I told her about Bailey's separation anxiety and that she really needs to be held to go to sleep. She disagreed. She told me that night time is for sleeping and sleeping happens in the bed and that Bailey would eventually fall asleep, we just spoil her. I do not expect her to hold her all night long. But if she is crying to the point of needing to be suctioned, I expect her to pick her up and comfort her. She was not receptive to the cloth diapers. Luckily, we have a small stash of disposables that were given as gifts almost 9 months ago! She then asked me to turn the air conditioning on. It was 45 degrees out last night and while it was warm upstairs, there is a fan in the room. She said it wouldn't cut it. She also wasn't happy about the room humidifier. I stayed and watched her to do assesment (heart rate, bowel sounds, temp) and she mentioned that we should be taking better care of her g-tube area. I told her it looks better than it has in a very long time and she seemed appalled.

I left the room and told Blaine I wanted her out of our apartment immediately. He told me he didn't understand what I was feeling (shocker, right? A man not understanding feelings!) and that she was staying. He later convinced me to let her come back tonight and see if things change. But things will have to change dramatically for me to even consider not calling the agency at 8:00am tomorrow morning.

Has anyone made it this far? If you did, congrats! So it looks like we will be back to 4 nights a week. Monday-Thursday. I will stay up Friday and Sunday and Blaine will take Saturday. Hopefully, I feel rested enough to blog a few times a week but time will tell. Am I out of line for expecting the nurses to conform to these two things?

10 Months Old!

2010-03-06T12:00:00.000-06:00

Our adorable little girl is 10 months old today! Bailey was weighed Thursday on the traveling scale at 10lbs 6.5oz which would be 10lbs 14oz on the Doc's scale (her scale is more accurate but she is only weighed on it during office visits which have been basically non-existent in the winter)! I thought she would be just under 11lbs so we were right on track!

The theme I heard this month from everyone that saw Bailey was that she was acting like a 9-10 month old should be acting! I agree and think there has been a big change in the Pants this month. She looks bigger and just acts differently, in a good way. I keep telling her she is acting like a big girl and I'm torn again while wanting to keep her a baby forever but having her grow and get rid of all this medical equipment!

Her sitting has gotten much better this month. She can stay up as long as she wants and mostly uses her stomach muscles to keep her up. She has finally started putting her hands down to catch her but more often then not she just falls over. She has put herself in a sitting position from laying down twice - both times on our bed. She is standing really well. We got her a new toy last week to encourage her to stand and her eyes light up when we get it out. She can keep her legs straight for a minute or more at a time. We still have to stop her from falling backwards, but she bears all 10+lbs of herself. Bailey with Grandma H. and her new toy:

She is not signing anything new but seems to be trying to sign 'yes'. My mom told her 'no' the other day and she signed 'yes' but I don't think she meant to do it! She is still shaking her head 'yes' and 'no' and definitely knows what the word 'no' means. Sometimes she will get very upset when we tell her 'no'.We are working on connecting the shaking of the head + plus the saying the word + the sign, on 'yes' and 'no'. She knows that 'doggy' and 'Trebek' are the same thing and will look for him when I ask her is she can find him. She does the same thing for 'daddy', 'mommy', and 'grandma'. She gets really excited when I tell her we are going to see grandma!

We are still dealing with the separation anxiety but it seems like it may be just with me. Blaine can put her down and be gone for 30 minutes and she doesn't make a sound. She has seemed like she wants to be down on the floor more often this month, which was ok with me (more on that another day). She is cool on the floor for an hour or so but is not cool with me leaving. She will roll from side to side but HATES being on her stomach. So until she is walking, I don't have to worry about her getting into things she shouldn't be!

Last month, Bailey mickey button got pulled out on accident by Blaine. This month, it got pulled out by Bailey. Luckily, it was a night we had a nurse and she got a new one in without a problem. She is not eating or drinking anything by mouth (we have not been given the go to try that out) but we are supposed to let her taste and feel different textures so we deal with as little sensitivity as possible when she is able to eat normally. She has tasted apple, cantaloupe, Frito's, wheat thins, and bacon this month. She didn't seem to be a fan of any of them but the cantaloupe gave us the least offensive face!

Bailey also got a new car seat this month! We got a really good deal (we saved 40%!) on a highly rated convertible car seat and used part of our tax refund to pay for it. She will stay in this seat until she is 50lbs...so we have some time. I'm still figuring out how to get her out of the car seat and out of the car without bumping her head! Look how long her legs are! Happy 10 months, Bailey!

We Made It!

2010-03-05T22:30:00.001-06:00

After some drama with the Nursing Agency including death of a spouse, a firing, and 3 would-be replacements that didn't show; starting Sunday, we will have nursing care 6 nights a week!! So why not all week? Blaine has decided he likes the time he has with Bailey on Saturday nights and is more than willing to stay up all night. Weird, right? Do you know 6 nights a week means? Well, it means alot but here are the top 3 - a return to normal sleeping hours and thus the return of my sanity, a return to treating my husband like I know him and not so much like a stranger that for some unknown reason lives with us, and a return to blogging!

I have a full month of things to share (as full as you can get on almost no sleep) - how excited are you?! Here are a few things to come:

Our new budget!
Freezer cooking!
Cloth diapering update!
Bailey is 10 months old tomorrow!
Pictures!
Feeding update!
Therapy (Speech, OT, PT) updates!

My return will begin with Bailey's 10 Month post tomorrow!

Bitch Time

2010-02-12T05:00:00.001-06:00

It is 4:40am. I'm awake. I HATE not having nursing half the week. I am the one that stays up all night long because Blaine works(no problem here - it makes the most sense). What does that mean exactly? It means getting a whopping 5-6 hours of sleep in 72 hours. It means having my sleep schedule royally screwed on the nights we do have nursing (BTW - we have a nurse tonight). It leads to exhaustion. And sleeping for almost 24 hours in a row. You heard me. I felt like I was getting a cold on Monday and Tuesday. I woke up Wednesday unable to breathe and with a wicked headache. Blaine stayed home. I slept from 3:00am-7:00am, 7:30am-3:00pm, 6:00pm-9:00pm, 11:30pm-11:00am. 22 out of 28 possible hours. And guess what? I'm still tired and don't feel well. I want to sleep. I want to get back to sleeping when I am supposed to. But I can't sleep the nights we have a nurse and expect to stay awake the nights I'm needed. My body doesn't work like that. We have a fill-in coming this weekend (her normal patient is in the hospital) and maybe next weekend but no more than that. Do I take the chance? Can my body handle a switch back to normal and then back to screwy? When oh when we will have nursing 7 nights a week again? I miss my sleep. I need my sleep. Just ask my husband.

9 Months

2010-02-06T22:27:00.000-06:00

3/4 of a year old!! How did that happen?? Bailey was weighed on the traveling scale on Thursday at 9lbs 14.5oz. If you are keeping track, that puts her at 10lbs 6oz on the docs scale (9lbs 6oz on TS = 9lbs 14oz on docs). I personally believe she is over 10lbs! Her length is up in the air - 25in. at the doc in Nov. but only 24in. 2 weeks ago. Either way, she has very long legs.

Other than the feeding drama (she is now getting 23.3 ounces a day), there really hasn't been much new this month. She is sitting about the same but I think she could pull herself into a sit if she wanted. Tummy time is not happening anymore - she starts flipping back over before I even put her down. It is funny, but not productive. She stands well with support but no steps or pulling up on stuff. She has starting bouncing when she is standing. She started waving this month. Cute story: My mom was playing with Bailey's toy cell phone and holding it up to Bailey's ear and saying 'hello' - Bailey waved the first few times! She likes having a toy in each hand and hitting them together. She likes to show us the toys she is playing with but always pulls them away when we go to take them. I guess sharing is something that needs to be taught! Her favorite toy this month is a little Simba (Lion King) toy. She will drop everything when she sees the lion at Grandma's house!

In Bailey's small world, her daddy is extremely funny. He just has to look at her and she busts out laughing. She has only laughed for me once. But Blaine walks in the door and she just can't stop! Grandma H. also gets the laughs...well, I guess everyone but me gets them. We are still dealing with a heavy duty case of separation anxiety. When she is napping, I try to put her down but she just wakes up and cries. I was able to put her down for 30 minutes on Thursday, but she hadn't napped in 9 hours.

This month also marked the first time her mickey button popped out of her stomach. Blaine picked her up off the couch and the cord was stuck under the arm and it pulled the button right out. Blaine was all calm...and I was not. I was panicking thinking about all the stories I have read about parents not getting it back in and by the time they are seen at the hospital it's to late and the kiddo has to have surgery to place it again. So I ran to get a syringe and pulled out the water out of the balloon that holds it in place and gave it to Blaine and he put it right back in her stomach. 3 hours later I remembered that I should have washed it off before putting it back in - hopefully it won't cause any problems.

Happy 9 months, Bailey!!

Out of Commission

2010-02-05T13:42:00.001-06:00

I know things have slowed down here, but with the change in nursing care, blogging isn't on the list of things that have to be done. Until things get back into some kind of routine, posting is going to be basically non-existent. I will do Bailey's 9 month(!!) post tomorrow and will make sure to post other big stuff. Hopefully this will only be another 2 weeks or so...I don't know if I will be able to form complete sentences, let alone blog, if it's any longer!

PS: Rock Chalk Jayhawk!

Happenings

2010-01-29T19:17:00.000-06:00

I finished our taxes. Our federal refund should be here in a week, the state is another question. Hurray for being able to pay off bills!

Rough week around here. A 6 year old drowned in his tub and arson in an attempt to cover up a homicide. Ready to upgrade our location...

Kiddo didn't make it to the doc for her weight check this week. We forgot until Wednesday (awesome parents right here!) and had nurse issues and then another evil winter storm.

The agency is changing our schedule and Bailey's favorite nurse, M, is being transferred to a new case beginning Monday. K is back in school and had to change her days as well. We could have as many as 4 nights or as few as 2 a week not covered. That means sleeping in the recliner with Pants. All. Night. Long.

Figured out how to watch Hulu on the Wii (necessary because my computer has no sound - please ignore the fact that my husband's occupation is computers). It makes the afternoon go much quicker.

Obligatory cute picture ahead. It may be 2 months old but who cares? I put her down in the opposite corner facing the other direction. Ignore the dog butt.

Our Crooked Normal

2010-01-27T23:37:00.000-06:00

Lack of updating = everything is normal, or at least as normal as it gets around here. Our normal includes hooking Bailey up to a machine to eat every 3 hours, suctioning out her airway, and listening to her breathing all day to make sure there are no plugs on the horizon - she sounds like a trumpet when there is an immediate problem but whistles when she is close to the trumpet stage.

Bailey and I have been getting up at 7:30am (when Blaine leaves for work) and playing until her 9:00am feeding. Then we nap. Both of us. I don't like mornings.
She gets 2 more feedings at 12:00pm and 3:00pm. We play and she sleeps.
If I'm lucky I can put her on the floor for a few minutes to try to figure out dinner.
Blaine gets home at 5:30 and takes over the 6:00 feeding while I finish dinner.
We eat, watch some tv, and talk until 9:00pm when the nurse arrives and Bailey goes to bed.
Then we talk, play Wii, and go to bed around 11:30ish.
Of course, between 7:30am-9:00pm there are diaper changes, suctioning as needed, 2 cleaning sessions, and at least 2 outift changes but could be up to 6.

Most of the time, I don't even think about what I'm doing because it has become so normal. But there are days when all I think about is that what we are doing is not normal. Things shouldn't be like this. But my thoughts eventually fade and I fall back into the normalcy. I hate sounding ungrateful and whiny - I know how blessed I am to have a child - but, almost 9 months later, I am still struggling with our normal. How long does it take? Will it get easier? Or will it stay with me until everything is actually normal - breathing and eating without tubes normal? I don't feel like the thoughts come as often as they did a few months ago, but, I would like to know how much longer I have to wait until I don't have them at all.

The Doc

2010-01-21T15:41:00.000-06:00

Sorry for the lateness of this post - had a horrible migraine knock me out on Tuesday and the internet was down all day yesterday. On to the good news!

Bailey weighed in at 9lbs 14oz - 8oz higher than Friday! We have been feeding her more but not that much more! Dr. H thinks the scale used on Friday was off - it gets taken all over the place, we will be calling it "the traveling scale" from now on. Se was measured at 24 1/4 inches - less than than the Nov. visit - she didn't shrink but they never check the previous stats. She had some granulation tissue burned off around her g-tube. Doc was very pleased with the milestones she is hitting and told us not to worry about crawling. I guess a lot of babies don't crawl until 9 months (2 weeks) and there is a growing number of babies who never crawl. We got permission to put baby food through the g-tube - I guess it was just her nurse who thought it was a problem. We also were told to give her some firm foods to suck on and taste. She suggested french fries and cheetos. She had already sucked on pizza crust and french fries - I didn't know we needed to ask. Doc said we could dip whatever we were giving her in yogurt or "other dipping sauces". Not sure I want Bailey covered in bbq sauce!

So, we are to stick with the current feeding schedule of 85mL/an hour every 3 hours during the day(4 feedings) and a continuous feed of 360mL/10 hours at night. All that together gives her 23 1/3 ounces a day. Still less than what an average 8-9 month old eats but it's close! I have been weighing her every night on our scale and she has gained every night! We have to go back to the doc's for a weight check (on the same scale) on Monday but assuming she gains, we are free to increase or change things(baby food) as we see fit!

The One Where I Explain

2010-01-15T20:33:00.000-06:00

I am typing without a 'C' key thanks to Bailey's recent interest in my computer. You are lucky my last post made any sense with all the pounding on my keyboard. She pounded out a nice message for Blaine and then hit the keyboard hard enough the 'C' key popped right off. Blaine has yet to put it back on. The rest of the week?

We had an early appointment Tuesday which screws up Pants sleeping schedule for 2 or 3 days.

On Wednesday, I slipped on the stairs but was able to grab the railing and catch myself after a few steps. The result - my right hip and up my side is all bruised, my right shoulder blade is bruised and very sore, and my right hand is bruised and swollen with my middle and ring finger not working so well. Smooth move, right? I guess I should be thankful my shoulder didn't pop out as it has a tendency to do with the simplest task, such as rolling over in bed.

The child will not let me put her down. I can barely run to the bathroom without her needing to be suctioned from all the crying. This needs to end. Soon would be good.

Bailey lost more weight. She is down to 9lbs 6oz. That brings the weight loss to 4oz in 5 weeks. At least we seem to have the doctors attention - they called about an hour after the nurse left. Right now, Bailey is getting 21.34 ounces a day. With the plan we are implementing this weekend (going back to ccontinous feeding at night), she will be getting 23. Not much more but we will see if she can tolerate the increase and she will be weighed again when we visit the doctor on Monday afternoon. They better have some answers for us or we may begin looking elsewhere. Since the news of the weight loss came down, I have been terrified they are going to put her in the hospital. No real reason to believe they would, but I am really good with irrational fears. But that's another story for another day.

More Feeding Drama

2010-01-14T22:31:00.000-06:00

I spent all last Friday on the phone with Dr. H's office. I got yelled at for adding the baby food to her formula. They told me it would plug her mickey button and to that I call BS. It was stage 1 which is basically water anyway but I was mixing it with her formula. You couldn't tell any difference in the texture or consistency from just the formula. We also got confirmation from our nurses who have taken care of kids in various stages who take normal food through the g-tube. As long as we flush the tube with water after feedings, it shouldn't cause any problems. And even if it does plug up the button - we just change it.

So after getting scolded, they tried to prescribe us a 24 calorie formula. The pharm called and wanted to know if I knew what they were ordering - I guess they just faxed a sheet with Bailey's info and '24 cal formula' written on it. Awesome job, guys. Next call was the doc again telling me our insurance would only pay $12 and it is a $90 can. They wanted to know if we still wanted it...I laughed at her and then explained we can barely pay for the $16 can. So they decided to change her feedings from 75mL over 45 minutes every 3 hours to 80mL over an hour every 3 hours (80mL's = 2.67 ounces). We were to do that all weekend and call them Monday to let them know how it went. She is tolerating it about 75% of the time.

We decided to continue until she is weighed twice more. With the next weigh-in she will have the benefit of 3 days of baby food and I want to know exactly what the increase in formula does. If there is no change, I have no problem going back to baby food for a week. And if that doesn't work, we will try something else. I didn't apoligize to the doc and don't feel like I should. It shouldn't take visit after visit and phone call after phone call for them to take my concerns seriously. We need to do what we need to do to get Bailey growing. Her weight upon coming home from the hospital on June 22 was 7lbs 4oz (up 2lbs 4oz from birth). In the last 6.5 months she has gained 2lbs 3oz. No growth = no surgery = trach and g-tube sticking around longer than they should.

BTW: anybody have an idea how difficult it is to type with the 'c' key? I'll tell you. It's hard. More on that tomorrow...

2 Little Things

2010-01-07T12:48:00.003-06:00

Project baby food has gone well. She will be through a little jar of sweet potatoes by the end of the day - an added 40 calories in 2 days! It doesn't sound like much but hopefully it will help.
Cold front? Isn't there a stronger word for negative temps and evil wind chills? We had to rearrange our living room (again) to move the couch away from the windows. Our curtains blow in the wind.

8 Months

2010-01-06T10:47:00.000-06:00

Pants is 8 months old today! After her recent weight loss, she is down to an extra-slim 9lbs 7.5oz. This month, she knocked out 2 holidays, celebrated 2 family birthdays (would have been 3 if she hadn't fled the state for her birthday!), and has not let me out of her sight from 7:00am-9:00pm.

Let's start with the separation anxiety. Why was I not warned about this? Diapers, screaming, not sleeping, teething - all things I was warned about. Separation anxiety is terrible. When does it end? What can I do? Everything I have read says to make sure babies have many people that they recognize - we don't have that. In an effort to keep her healthy, she only sees 7 people on a regular basis - including Blaine and I and the 3 nurses. Until the last few weeks, she has been ok with the other 2 (my mom and Casie). But over the last 2 weeks, we have had to block her from seeing me if someone else is holding her. Don't get me wrong, I love holding Bailey, but I can't do it all the time. She refuses to play on the floor or her exersaucer if I am in sight and even that only lasts for 10-15 minutes. She has 2 different cries and with the non-serious one, I let her cry. But when she starts in with the serious one, I can't just let her cry it out - she will need to be suctioned multiple times which just makes her more upset. Not to mention the recent studies that show "crying it out" can cause brain damage. So what do I do?

During one of the birthday celebrations, Bailey sat on the table for a solid 30 minutes with minimal support. She would sit for 5 or 10 minutes and then lean back and stay for a few and then pulled herself right back into the position. I decided that day that the not-sitting I was worried about last month - stubbornness. She gets it from both sides, I guess I shouldn't be suprised. Yesterday, I brought it up our Rainbows person, J, and she agreed. She watched Bailey sit when she wanted to and push and purposely flop over when she was over it. J also said while watching her that if Bailey wanted to, she could probably pull up to a stand. She stands well with support, when she wants to, of course.

She wants to hold on to everything. She throws everything. She knows who "doggy" is and shakes her head "no" at him when we tell her to tell her to tell the doggy no. Of course, when asked if I am her mom, she says no. She hasn't learned any new signs this month. We have been working on waving, clapping, and high fives. I think she waves, but Blaine thinks she is just hitting stuff. Thanks to Aunt Casie, she is an expert high fiver. Her new favorite toy is a wash cloth. For some reason, she can't get enough. If she is upset? Just give her a wash cloth - she will go right to sleep. When she lays on her back, she tried to bring herself into a sitting position and can almost get there - 6 pack baby. Still no crawling but she can get to where she wants to be by scooting either on her back or her stomach. At night, she has started sleeping on her side.

Her weight, again, seems to be the only thing we have to worry about. I attempted to further concentrate her formula again this month and she wanted nothing to do with it. Our medical people haven't been all that helpful (as long as she is growing one way, she is fine) so we are going to try something on our own. At 8 months, babies are more than capable of digesting "real" food. We have permission to give her yogurt but that really isn't many calories. So we bought 2 little baby food containers - 1 sweet potato and 1 apple. So on her 8 month "birthday" we are going to see if Bailey will tolerate extra calories of normal food. Wish us luck!

It Might Be Late...

2010-01-05T14:00:00.000-06:00

but it's difficult to blog with a child who wants nothing to do with being out of your arms. But more on that tomorrow. I promised a Holiday 2009 post.

The evil snow storm threatened our Christmas day festivities was not as evil as the weathermen told us - the wind was evil but nothing we don't deal with often and only 2-3 inches of snow. Casie and I were up early getting everything ready to go before getting Bailey from the nurse. We then dressed Bailey in more clothes than she has ever seen including the adorable hat Casie made for her:She wasn't too happy. Can you tell? We were out of here and on our way across town by 7:45am! We hung out and ate homemade cinnamon rolls while we waited for Bailey's great-grandma Marge and great-uncle Jim- Bailey played the piano with Casie:

We opened gifts - we all got Wii's - best.gift.ever - Thanks! Bailey got some clothes, a cute Santa nightlight, and diapers! She tried opening gifts with Casie...

Then great-uncle Greg, great-aunt Sally, and whatever Graham is to Bailey came over. We had an awesome lunch and spent the afternoon playing wii! We had an awesome time but missed daddy who was in PA visiting grandma and grandpa.

My mom's birthday is the 26th so I made her a cake and we spent the day playing wii again! Trebek decided he didn't like Randi sword fighting and "attacked" her- it was hilarious! On New Year's Eve, mom strained a muscle playing wii bowling and almost passed out. She was doing much better by midnight. On New Year's Day, we had our traditional lunch of ribs, sauerkraut, and potatoes - yummy! Bailey spent most of the time on my lap playing with whatever she coould get her hands on. Daddy came home on the 2nd and Casie left on the 3rd. Those were our holidays and now: more pictures!

Happy New Year!

2010-01-01T00:30:00.000-06:00

The clock just chimed midnight here in the middle of the country and as we celebrate the new year, we also remember the year that passed. 2009 was filled with sorrow and confusion in the last few months of my pregnancy; and eventually joy and happiness at the birth of our first kiddo, and this blogs namesake, Bailey. While I may have days where I still don't understand why, my baby is with us and healthy. And for that, she is the greatest gift we could have been given this year. There is so much to look forward to in 2010 and I can't wait to get started.

*PS - I am planning an all-encompassing holiday 2009 post...after the last of the holiday traditions.

Merry Christmas!

2009-12-24T23:25:00.000-06:00

As I sit here with one of my sisters (wishing it was both - darn weather!) and Bailey watching 'Twas the Night Before Christmas', I can't help but be happy. Sure, my husband is gone and "Christmas" may not happen on Christmas, but still, I just can't stop the happiness. It really is the most wonderful time of the year, you know, minus that pesky snow and 50mph wind that is attempting to ruin the family togetherness.

This is now my 2nd attempt at this post - the first was around noon and obviously was interrupted. However, we have learned a few things since the last attempt. A Christmas Story is now on it's third showing of the night and is as good as it was the last 25 times I have seen it. Christmas - not so ruined. We are still getting snow but the roads are in great shape (according to our wonderful nurse who volunteered to work Christmas Eve). The wind will hopefully die down before 7:15am(we need to be there at 8:00am) when we are scheduled to leave for the normally 20 minute drive to mom's house. The dog had to be pulled outside this afternoon; we will see how he acts when I take him out soon. We may be looking at another 24 hour bathroom strike by our little buddy.

And now my favorite part of the birth of Christ:

Luke 2:8-14
In the same region there were some shepherds staying out in the fields and keeping watch over their flock by night. And an angel of the Lord suddenly stood before them, and the glory of the Lord shone around them; and they were terribly frightened. But the angel said to them, “Do not be afraid; for behold, I bring you good news of great joy which will be for all the people; for today in the city of David there has been born for you a Savior, who is Christ the Lord. This will be a sign for you: you will find a baby wrapped in cloths and lying in a manger.” And suddenly there appeared with the angel a multitude of the heavenly hosts praising God and saying, “Glory to God in the highest, and on earth peace among men with whom He is pleased.”

Things I Have Learned in the Last 6 Months

2009-12-22T21:56:00.000-06:00

On the 6 month "anniversary" of Bailey's homecoming, I thought it would be nice to put on "paper" what I have learned and maybe some things I am still trying to understand.

Having a baby is much easier but much more difficult than I ever dreamed. All the things I was terrified of before she was born - cake walk. Those instincts kicked in pretty quickly after she came home. Granted, I don't have to deal with a screaming baby when she is upset, which I know changes things. Bailey's physical disabilites throw in some challenges that no one should have to deal with, but you do what you have to do. However; watching her struggleto breathe sometimes, never hearing what I am sure is a beautiful voice, and knowing what she is going to be going through - still more than I can think about at one time. Not to mention the growing out of clothing and just generally being to old already.

All that crap you just have to have - don't really need it all. We have used Bailey's stroller a whopping twice. Not saying not to get one, ours was a gift, but if we had to purchase it - it would have waited. Bedding sets are another thing. Bumpers are no longer considered safe and babies shouldn't be using the big quilts. You just need a few sheets and, when the baby is moving around, get a mesh bumper. Swings and bouncy seats - before you buy, see if you can borrow one to make sure the kiddo likes it.

Onesies are awesome. Pair onesies and baby legs - even more awesome. Pants are totally overrated. Baby socks get lost and never reappear. Then kiddo ends up with a drawer full of no matching socks and cold feet.

Baby poop? Not as gross as I thought. So we have been using AIO cloth diapers since Thanksgiving. Not long, but long enough to form an opinion. Shaking of the diapers to rid them of their poo - not nearly as bad as I thought. And it's not any more difficult than throwing them away.

Jealousy and anger really don't help anything. Even though I know this is true, I'm still struggling with both. They fade in and out and sometimes I don't even realize what's happening until I just out and say "unfair". I don't really know if these will ever go away, I hope they do. Why can 14-15 year olds and addicts have healthy, normal babies? Seriously?

I can handle this. I know God doesn't give you anything you can't handle, but to be honest, had I known this was in the cards - I would have been more careful in Sept. 2008. I love Bailey more than I thought I could love anything, but there is zero chance I would have ever signed up for the next several years. We are lucky, in that Bailey's "problems" have an end. We don't know when, but there is an end. And some days, knowing that gets me through. And on that note...

I am in no way in control. I can't schedule when Bailey will be upset or when she will be asleep. I never thought of myself as a controlling person, but, because I have zero control of the baby, I find myself grasping for control over everything else. Poor Blaine.

I can't possibly consider having another baby. Why did this happen? How can we possibly consider having another child until we know if her anomilies are genetic or if they were a fluke? It 100% sucks that we have to travel 8 hours to our chosen Children's Hospital. I need an answer. I don't care what it is, I need one. I want to have more children but if there is a high probabilty of Bailey's problems happening again - not gonna happen.

I love this little girl and, cliche as it is, I can't remember what it was like without her.

Weight Loss

2009-12-18T13:30:00.000-06:00

I wish I was talking about me. Bailey lost 2 oz. Suck.

Rainbows Change

2009-12-17T16:10:00.000-06:00

Bailey's early intervention program, Rainbows, has taken it upon themselves to make a change on our behalf. I will go ahead and say we are not so happy about it and everything that comes with that change.

We have a new team leader. Bailey has a team of 6 people who meet once a month to discuss her case. The leader comes out to our place for appointments and decides if Bailey needs to see any of the other specialists. Our original leader (O.L.) sprung the change on me by bringing the new leader (N.L.) to one of our appointments and asked if I had a problem switching. I literally had just met the woman 10 seconds before; how do I answer that question? The reason given for the switch was signing. Our O.L. knew some sign but the new one was a teacher so obviously she knows a lot more.

I will go ahead and say that I am in no way in denial. I know my child, most likely, does not hear as clearly as she should (without the hearing aid); however, she CAN hear. I know sign language is going to be a part of our life, not because of her hearing, but because of her trach. Until the trach is out, we have been told not to expect much (if any) vocalization. For her to communicate, she will need sign language. We started signing family signs - mom, dad, aunt, uncle, grandma, grandpa, and great-grandma - when Bailey came home at 6 weeks old. Since then, we have also picked up the signs for hungry, full, more, sleep, please, thank you, and dog. What other signs does a 7 month old need to know? She is already signing 'mom', 'dad', and is shaking her head 'no'. She may not no what they mean but it's a really good start.

The N.L. decided that we needed to move to appointments once a week and that I need to learn 5 new signs a week. We have now had 2 appointments and I really don't think this is going to work. With both appointments we have only discussed Bailey's hearing issues. When I bring up my concern about B not sitting up or attempting to crawl, she brushes them aside. You know, missed milestones? What Rainbows is supposed to be helping with? I guess learning the signs for airplane, tree, and car are more important. Because every 7 month old can tell their parents they want to go on a car ride or climb a tree.

Our next appointment is January 5 and I will keep it to see if anything changes in regards to my my concerns. But if not, I guess we need to figure out who to talk to about possibly making the switch back to our O.L.

Absent

2009-12-14T23:40:00.000-06:00

It seems like things have been pretty busy around here but I guess there hasn't been much new going on.

We have been light looking twice and have sat in front of one particular house for almost 45 minutes and we have plans to go back again. Stalking? Possibly, but awesome lights mean return visits.
I had a wicked headache for 3 days last week. And this evil cold weather has my knee keeping me up at night.
Things with Rainbows have changed and I have a post in the works about all that stuff.
I have been trying to do everything I can to help Bailey sit up. Things are getting somewhat easier. If she has something interesting in front of her she will support herself for up to a minute. But then we topple - she still isn't getting her hands down and I'm not sure how to show her to do that.
Aunt Casie is home! We started to make cake balls. We got as far as stirring in the frosting before we just decided to eat it. Good thing I got really cheap cake mixes last week.
We had a big shopping trip on Sunday. Blaine will be gone for 2 weeks over Christmas and New Year's Day. There are a few items to pick up before he leaves but our grocery total for the month of December will be under $200! However, our formula amount is almost as much as a month of groceries. Do we really need to keep her on this special stuff for another 2 months??
Did I mention Blaine is leaving Sunday for 2 weeks? He will be driving 23 hours to south-central PA to spend the holidays with his parents. We considered Bailey and I going with the H1N1 vaccine being a must. However, I read several different sites that said the recommendation of 6 months is based on average weight. For a 6 month old, that is 14-21 lbs. At 7 months, Bailey was 9lbs 10oz. So that tipped the scale for us. So Bailey and I will be staying at home and spending all day with Aunt Casie who is staying with us.
Aunt Randi's bday is Saturday. I can't believe my baby sister is going to be 18!
Bailey had her first "food" other than formula this week. Apple juice added to formula in an attempt to take care of some constipation issues. I even put some in a syringe and gave her a little by mouth. She just kinda looked suprised.

Like I said, with Aunt Casie home, hopefully I will have a little time to work on updating more often. I will try to get all the madding Rainbows details up tomorrow. Also a new picture. Promise.

7 Months!

2009-12-06T22:28:00.000-06:00

Bailey is 7 months old today!! She spent the day sleeping, crying, and playing with toys. Her weight check on Friday put her at 9lbs 10oz.

Because Bailey was born prematurely, she is measured developmentally by her adjusted age. Adjusted age is how old she would be if she was born on her due date, which was June 9. However, Bailey has been hitting the milestones she should be hitting for her chronological age. Blaine and I have been thrilled with how she has been doing, which I think is why it is somewhat disappointing to report otherwise. We just need to remind ourselves that she is not behind for her adjusted age.

Sitting up without support has hit a great big road block. On my lap, she will put her hands down or out to hold herself up. On the floor - negative. She literally will push against whoever attempts to get her in a sitting position. Are we seeing some of the stubbornness that we thought would eventually rear it's head? Tummy time is still a struggle. She will wiggle forward but still cannot coordinate getting her hands down and her legs underneath her body. What we thought was teething last month has brought nothing. She is still acting like there might be something going on up there.

Onto the positive stuff. She is interested in everything. She needs to hold everything she sees. If she is sitting on one of my legs, I can't keep anything on the other or she will get it. She wiggled herself off my leg and threw herself to the other to get a plastic bag the other day. If only we could get her moving on the floor! This can be a bad thing, like it was on Thanksgiving. I didn't think she could reach my beloved DDP, but she reached way out and she got it. She cut her poor little finger and had to have a band-aid. She is taking 2 naps a day and wants to be sitting up if she is awake. She can stand while holding on to someone. She likes having a toy in each hand and she either trys to put both in her mouth at the same time or hits them together. She plays peek-a-boo - she will bring a blanket over he face and pull it down when I say 'where's Bailey?'! She finally signed 'mom' yesterday after signing 'dad' for the last 6 weeks. We still don't think she knows what they mean but it is a very good start. We are working on waving, high fives, and clapping.

We think she is starting to have some separation anxiety. It is making life just a little more difficult. With a normal baby, you can let them cry; but with Bailey, if she gets going, she needs to have her trach suctioned sometimes 2 or 3 times before she calms down. Trying to cook dinner or even just folding a blanket, gets very frustrating when you have to stop every minute to suction. So far the solution has been not to leave her and just wait to do everything when Blaine gets home from work. The solution going foward? We bought some fabric and I am going to attempt to make a baby sling, as well as a wrap. Hope it works!

Must Do's for Christmas

2009-12-03T16:10:00.011-06:00

Bailey may not remember this Christmas and all of our traditions, new and old, but we are making an effort to include her in every one of them. For instance, Aunt Casie helped her hang her first ornament on Grandma's tree on Friday. She has already enjoyed looking at Christmas lights and will be doing quite a bit more of that. So, in an effort to have Bailey experience most of our traditions, I am making a list. As we do things, I will be changing the color from red to green, so when Bailey is older and asks if she did all these awesome things as a baby, I can show her. These are in no particular order and I will add to it as I remember everything...

Decorate Grandma's tree the day after Thanksgiving
Decorate our tree 2 days after Thanksgiving
Hang our stockings on Christmas Eve - fail due to weather
Drive around the city multiple times looking at Christmas lights with College Hill being at the top of the list
Hit Lights on the Lake and the Lights on St. Paul at least once
Listen to only Christmas music from Thanksgiving till New Years
Watch the tree at Rockefeller Center lighting ceremony - fail thanks to KU vs. Alcorn St.
Watch ridiculous amounts of Christmas movies - The Santa Clause 1&2, Elf, Home Alone, The Family Stone, The Bishops Wife, Rudolph, Frosty, The Year Without Santa Claus, Miracle on 34th Street (both versions), How the Grinch Stole Christmas, The Grinch, A Charlie Brown Christmas, Love Actually, Mickey's Christmas Carol, Christmas with the Kranks, The Family Man, National Lampoon's Christmas Vacation, White Christmas, Christmas List, Single Santa Seeks Mrs. Claus, and Twas the Night Before Christmas
A Christmas Story or football are the only thing allowed on tv on Christmas Eve
Toture Grandma when she argues that we never open 1 gift on Christmas Eve - fail due to weather
Open a gift on Christmas Eve - see above
Eat massive amounts of Kiss Cookies, Peanut Butter Balls, and Chocolate Roll

1st Thanksgiving

2009-12-02T11:21:00.005-06:00

Bailey's first Thanksgiving wasn't too busy. At least, that's what we thought. Until we had a very cranky, overtired baby on Saturday and Sunday. Blaine was sick all week and stayed upstairs during the day and slept on the couch at night. So by the time Aunt Casie got here on Wednesday, I was more than ready for some help. Casie is the only family member who has learned to take care of Bailey and, when in town, she has been a huge blessing. On to the big day...

Bailey and I set the alarm for 9:00am just in time to watch the Macy's Thanksgiving Day Parade and her feeding. She didn't seem too interested. She watched The Rockettes and John Stamos singing. I would say those reruns of Full House I watched while pregnant was influential. Around 10:00, we started getting ready. We didn't travel lightly - suction, feeding pump and pole, high chair, diaper bag, toys, cake balls, cameras, and Trebek. We finally pulled out about 10:45. We had lunch with my Grandma, Uncle, Mom, 2 sisters, and a boyfriend. Everything was good - Bailey chilled in her high chair, the food was tasty, and good conversation. A few of us played 10,000 all afternoon, the dogs ran and ran, and Bailey didn't do much sleeping. We finally headed home around 8:30pm to be home in time for Bailey's nurse at 9:00. The nurse - not scheduled. Of course, we didn't find out until 10:00. So the pack-and-play was to be Bailey's crib for the night but it ended up not being used at all. She cried everytime I put her down. I tried to wait her out everytime, but she cried and cried and cried. So she ended up on my chest all night long. Can we say no sleeping?

Friday, we went back to my mom's to decorate and help put up the tree. We were there all day and, again, Bailey didn't sleep much. We got home at 9:00pm and handed her over to the nurse and told him good luck. That night, she only slept maybe 3 hours on and off. Saturday we put up our tree and did most of our decorating. Aunt Casie came over and attempted to take care of Bailey. But Miss Cranky Pants wasn't having it. My mom came over and tried to get her to sleep for a few hours but nope. She was so upset all day. I guess about 6:00pm we decided to give her some Tylenol. Right or wrong - it calmed her down and allowed her to sleep. Sunday we went back to my mom's to spend the day with Casie and ordered so much Chinese food it had to be put in a box. We all ended up leaving around 5:30. The cameras are all the way across the room so I will get some pictures up later.

Bailey is just starting to get back into her normal sleeping pattern. The difference between sleeping B.T. (before Thanksgiving) and A.T. - she will not let me put her down. She screams. The apartment is a mess because I cannot put her down. I love holding and cuddling with her, but, this is going to end right?

Hurray for a Deal!

2009-12-01T17:03:00.003-06:00

I will post about Bailey's first Thanksgiving later, but this has to be quick.

I have professed my love for Old Navy before but let me say again, I love Old Navy! Friday night, I jumped online and scored 5 awesome shirts and a tank top for myself, 2 long sleeved onesies, 2 pairs of socks, and a pair of pants for Bailey. On any other day, this would have cost me $150. Friday night, I got it for $50 plus free 3 day shipping!!! Also, because I shopped through ebates I get 10% back! So I saved 70% - Way to go me!!

Too Cute

2009-11-24T23:09:00.004-06:00

Great News + Plans

2009-11-24T00:25:00.005-06:00

In awesome news, Blaine is sick. His throat hurt slightly when he came home from work on Friday afternoon to take care of Bailey while I layed in bed and prayed the evil migraine would leave and never return. He promised me it was just dry air. And then the same on Saturday. He had a little headache to go with the throat on Sunday. And then I noticed his ears were bright red, so I thought maybe his allergies were catching up with him. When you are allergic to everything - it happens. Then this morning - he barely had a voice, lots of drainage, and a headache. Awesome.

Maybe it wouldn't be such a big deal if he hadn't basically cared for Bailey almost exclusively over the weekend - morning care and evening care both days, he took her in the mornings so I could get a little extra sleep, the 6 hours I spent making cake balls for Thanksgiving, and then the times he just wouldn't hand her over. Which is adorable until you realize your itty bitty child has been exposed to whatever he has. He stayed away from her today but she has already been exposed so now we wait and hope.

On tap this week (assuming no hospital visit necessary)-
Tuesday morning - Rainbows w/Speech & Occupational Therapy + Audiology
Tuesday afternoon/evening - Casie comes home!
Wednesday - Casie leaves :(
Thursday - watching the Parade on TV then all day at mom's
Friday - All day at mom's - decorating!!
Saturday - Decorating the apartment!!

Random Thursday

2009-11-19T13:25:00.004-06:00

Not much going on around here.

It got cold. And then it warmed up again.
I haven't been out of the apartment since our weekly Sunday visit to my mom's house.
I didn't make it long without cable. We turned it back on Saturday at a lower level than we had before. We are still saving $30 a month.
Bailey's premie formula is expensive. We go through a can every 4 days and each can is $16. That adds up to almost $130/month.
We are making the switch to cloth diapering purely to save money to pay for her formula. This years Christmas gifts - 24 bumGenius AIO's. We are also planning on picking up 4 Flip covers and 12 inserts for $80. That will bring us up to the minimum recommended number of diapers until Bailey reaches 22 lbs, which at this rate will be never. Thank you, family!
Speaking of her weight - she hasn't been weighed in 2 weeks. Our nursing agency is supposed to do weekly weight checks. She went 3 weeks before the last weigh-in.
I broke down on the decorating. All of our decoration tubs are in our living room. I unwrapped some figurines and made a couple of vases Christmas-y, but everything else has stayed in the boxes.
I am thrilled with the top 4 on Top Chef. I would like Michael to go next followed by Jen and Kevin to beat Brian to win the whole thing! And then I will be sad because Top Chef is over.
My second love - college basketball - is picking back up while my first love - MLS - is playing it's Championship on Sunday. My beloved Jayhawks look pretty good this year and Bailey was thrilled when I introduced her to our boys on Monday night...and then she had to go to bed. Luckily for her, we spent the whole day watching basketball - God bless ESPN.

Oinky

2009-11-17T13:24:00.001-06:00

So the Swine Flu vaccine. It's a large pain in my ass. Yes, I said ass. What do you do when your bambino's pediatrician has no opinion? Ask nurses? We have done that - our home care nurses as well as a few nurses that took care of Bailey in the NICU. Our 3 home care nurses all said with our precautions, they didn't feel it was neccessary. One of our NICU nurses said absolutely yes, if Bailey was her child, she would be getting her the vaccine. Another asked one of the Neonatologist's that took care of Bailey and he said yes.

Our precautions - washing hands basically non-stop, careful screening of anyone who is anywhere near her or I, our already mentioned hermatude from mid-October until March with the only exceptions being my mom's once a week, my grandma's every once and awhile, and the one doc appointment in February. So where will she be exposed? Blaine is really the only person she might pick it up from, but he is washing his hands anytime he touches anyone's computer and is trying to stay away from anyone who might seem not well. My family knows that if they have been exposed to anything, they are to stay away. Our home care nurses are under the same instruction - sick kids or other patients - don't come to work.

So with those precautions plus the way I feel about vaccinations in general, but knowing that if she gets sick she very well may die, I am having a hard time deciding what to do. We had an appointment to get her the shot last week but we cancelled it. I know what you are thinking - your child could die, go right now and get her the shot. And that's where I am half the time. The other half - I say it's crazy to get her the shot and take the risk of something happening when we are already taking crazy precautions. Blaine is 70/30 for her not getting the shot. I still am 50/50. I think for now, we are going to hold off. Supposedly the rate of infection is slowing but may pick back up in January. So maybe we will keep thinking about it, and thinking about, and thinking about it. Is putting off a decision the same as making one?

The Almost 911 Call

2009-11-15T18:30:00.003-06:00

This morning, Blaine was changing Bailey's trach ties and I was getting everything gathered for our weekly trip to my mom's house. We don't travel lightly - normal diaper bag stuff, suction machine and supplies, feeding pump and IV pole. I think I was grabbing a bottle out of the fridge and talking about breakfast. And then I heard Blaine say "She pulled her trach out". I asked if he needed help twice and then heard "Come on, Bailey, breathe sweetheart". I hustled back into the living room, all the while reaching for my phone and dialing 911, I saw he hadn't gotten the tube back in, she was gasping for breath, and bleeding from the site. I jumped down on the floor and helped prop her neck and Blaine was then able to get it back to where it belongs. Had it taken any longer, I would have hit the call button on my phone.

That is as close to an emergency we have had since Bailey came home in June. Changing trach ties is something that we have become very comfortable doing - they need to be changed once a day. I just whip them off and put on the new ones like I've been doing it my whole life. I don't even think anymore about asking Blaine to help. This was a huge a wake-up call. Anything can happen at anytime. It is definitely going to make less complacent.

She cried for a few minutes while we cleaned her up and then we went on our way. How different it could have been...

November 1

2009-11-10T20:30:00.003-06:00

So I know I have mentioned before that we dropped our cable down to the basic level. I may be cheating that a little -the other channels still come in a little fuzzy but the audio is clear as glass. But that's beside the point. November 1st.

November 1st is the day every store in the known universe decided to start advertising for Christmas. I have 2 major problems with this choice. First, aren't we skipping a holiday here? Last time I checked, Thanksgiving is before Christmas. And the happenings we celebrate on Thanksgiving are a pretty big deal, at least that's what I was taught in Kindergarten. And 2nd, for those of us with admitted addictions to all things Christmas, these ads only make it worse. I just heard Blue Christmas by Elvis on an AT&T commercial. Seriously people? Are you trying to kill me? I need to just turn the tv off. But the internet? Same there. Christmas ads everywhere. I am trying to embrace my hermatage, but if the only things I see or hear are Christmas ads for the next 2 months, I am literally going to go postal. Completely 100% insane.

So, to the companies who are currently Christmas advertising: Please, for the love of all that is holy, stop the insanity. My child needs me and I need to see her grow up. It will be difficult to do this in a padded room. Thank you.

6 Things I Learned This Weekend

2009-11-08T19:27:00.005-06:00

When you are down to one caffinated beverage a day, don't knock back three in 6 hours. It leads to a long sleepless night.
When attempting to put cup hooks in a deck, have a strong man present. Or a lot of patience.
It really isn't a smart idea to have on the tv/look at the newspaper when trying to avoid decorating.
It also does not help that decorating itch to help someone else decorate.
Have a lot of free time when you set out to make Cake Balls. Especially for the first time.
You have a very small window when it comes to dynamite deals at Wal-mart. Such as Saturday - XBox360's for $199 plus a $100 gift card. Sold out in Wichita and online by 10:30am.

On another note, pray for Stellan!

6 Months Old!!

2009-11-06T14:30:00.004-06:00

My little kiddo is half a year old. That can't be right. Can it?

She celebrated by visiting the doctor. She weighed in at 9lbs 5oz and is 25 inches long. While I am frustrated with her lack of weight gain, the doctor isn't so worried. But she did prescribe an additive that will up her calories without having to change the formula. We made an appointment for her to get the swine flu vaccine on Monday morning. She had some granulation tissue that needed to be burned off around her mickey button. She has been asleep since coming home because she got dosed with tylenol for her shots.

So what has she been up to this month? She is still working on sitting up without support but is getting close. She decided feet are friends and can't get enough of them. I think she may be teething - I can feel something and she has been VERY fussy since Monday. She loves the toys on her brand new exersaucer even though her little arms won't reach them when she is sitting in it. She will play with them non-stop when we hold her up to the outside. She has perfected rolling from stomach to back. I feel like this is a skill that developed out of real necessity because of how angry she gets whenever she is placed on her stomach. If her arms are out when she is on her stomach - her legs are under her, and if her arms are under her - her legs are out. She loves her toys. And by toys, I mean everything she can get her hands on - the remote, my phone, cups, spoons, blankets, etc. Everything still goes straight to her mouth. If she drops her toy, she will look for it and pick it back up. She can move a toy from one hand to the other. She loves hearing animal sounds, particularly ducks and dogs. She is starting to grab onto Trebek - he is still not a huge fan but he did get very upset when she was crying yesterday. We had to move the straps on her carseat to the highest setting last week. She has been signing 'dad' for the last week non-stop. When I turn on the suction machine, she knows what is about to happen and tries to wiggle and bat the catheter away. She also knows when she sees a bottle, its time to eat. She is full of smiles but turns them off whenever I pick up the camera. Which makes it difficult to get a decent picture, but I will be working on it when Blaine gets home.

Happy 6 months, Bailey!!

Flat Tire

2009-11-06T01:06:00.003-06:00

Our nurse had a flat tire. This would be the 2nd in as many months. The first time, she didn't show up but we didn't find out she wasn't coming until 1:00am. This time, we got the call at 8:45pm she was getting it taken care of and she would be here as soon as possible. I called the nursing agency at 11:45pm to check up and they hadn't heard from her. We considered going to bed and just forgetting about her showing up. But we waited. And called again at 12:15am. They called and told her it was unacceptable. Her sister was going to pick her up and bring her over but it would be about 45 minutes. And it was. It's 1:00am and she just got here. Think she likes 1:00am?? Not normally a big deal for me to be up this late. But I was up at 7:00am because of Bailey's messed up feedings yesterday and will be up at 7:00am for the big 6 month checkup tomorrow. I like sleep. I may be slightly crabby. Sorry to all the people I see tomorrow.

Positive or Negative?

2009-11-06T00:33:00.011-06:00

Mark me down as suprised when Blaine brought the mail in yesterday. We only had one piece of mail but it was a big one. It was a letter from the Genetics Department at TCH in Denver!! Hurrah! Finally!! A beautiful envelope full of a diagnosis, for which we have been waiting 6 months...or not.

Bailey's chromosomes tested negative for Treacher Collins, Townes-Brocks, and Duane-Radial Ray Syndromes. She also tested negative for Fanconi Anemia, which is excellent, because by age 40, 98% of people which have it develop some type of blood disease (leukemia). She is also negative for other chromosomal instability syndromes which I know nothing about.

So positive or negative letter? On the bright side, she tested negative for some very bad syndromes. On the negative, we still have no diagnosis. I know this was our first shot and that more than likely we wouldn't be getting an answer but I am still disappointed. Even though we are not planning on having another child for quite awhile, it would be nice to know if Bailey's anomalies are something we need to worry about affecting future children. Not to mention between Blaine and I, there are 3 sisters who, in the future, may be having children.

Everyone keeps telling me it is good everything came back normal, and it is, but I am a pessimistic person and I'm not sure I see it that way. I want an answer. Before we got the letter, there was hope that there was an answer coming. But now? We won't see the geneticists again until May/June. Another 6 months waiting...and wondering...and waiting.

The Day After

2009-11-03T15:04:00.005-06:00

My family mocks me for it. My husband dreads it, even if he doesn't admit it. Anybody remember the pilot of Glee? How the wife mentioned something about a Christmas closet? Yeah, I have one of those. Have I mentioned we live in a 3 bedroom apartment? Remember the living room reorganization? That was a result of a panic attack about having nowhere to put our tree.

Hi. My name is Jana, and I have a problem. I don't know that it's really a problem but I guess that would indicate that it's a big problem. I blame it completely on my mother. Thanks, mom. I look forward to Thanksgiving because it means I can put up my tree and decorations without being called a freak. Not the family togetherness, tasty food, card playing, or the afternoon of stuffing my face while watching football. It's all about the day after.

As long as I can remember, our family put up the Christmas tree the day after Thanksgiving. Some people shop - we put up the tree. The outdoor decorations went up during a nice weekend at the end of October or the beginning of November. Everything stayed up through New Years and then it got packed away for the next 11 months. When I moved out, Blaine and I had a little tree but not much else. And then came the after Christmas sales. It's a good thing I was working when I collected most of what I have. Last year was the first year we had a big tree and were able to use most of what we have bought. It went up the week before Thanksgiving. I couldn't wait any longer. But not this year. Yes, I may have recently threatened Blaine that he will come home and the entire apartment will be decked out in garland and the tree will be completely done. I remembered yesterday that my closet wasn't big enough to hold our tree. It is making its home in my mom's garage. My threat is empty. He knew the whole time. But, seriously, not this year.

I am refusing to do anything Christmas related until Thanksgiving. That means music, movies, decorations, or the tree. Blaine has wanted to watch White Christmas for a month - not happening. I am dying to watch one of my favorite movies of all time, Elf. Can't do it. My iPod has zero Christmas music on it but come November 26 - all Christmas, all the time. We are decorating at my mom's on the 27th and our apartment on the 28th. Or the night of the 27th. We will see if decorating at my moms makes my shakes stop.

The Weekend

2009-11-02T22:10:00.003-06:00

This weekend seemed to go by really fast. Blaine spent most of the weekend chillin with Bailey. He got up both mornings when the nurse left and took her downstairs so I could get a little more sleep! That meant getting up at 6:00am on Sunday - I pretty much have the best husband ever. So what did we do?

I made cookies. Seems like I do that alot. I promise we haven't eaten them all. I made another 4 dozen pumpkin chocolate chip with the leftover pumpkin from dinner the night before. And I made 6 dozen chocolate peanut butter cup cookies. Blaine bought Reeses to take to work for the trick-or-treaters that came around his office - he forgot it. So I made cookies. I sent 5 dozen with Blaine to work to share around and the others are residing with the pumpkin cookies in the freezer.
Speaking of the freezer - we need another one. We will be storing the cookies at my mom's in her second freezer.
I planned out dinner for the entire month. Blaine went shopping. We got $180 in groceries for $135. Pretty good, right? And we had a gift card so we only payed $85!!
Bailey decided her feet are friends. In fact, she can't seem to love on them enough. I took a little nap this morning and everytime I woke up, she was playing with them.
BRU had Exersaucers on sale this weekend plus we had a 15% off anything coupon. We picked it up for $40!! She is still a little small but we put a blanket in front of her and she fits pretty well. Her feet touch the base so I guess she is tall enough.
We watched Brett Favre wink and smile at the booing fans in Lambeau. And then he kicked their rears. One of my distant cousins plays for the Packers but I had to cheer for Brett. Sorry, cousin I have never met.

So I guess it was pretty busy. My laptop spent the last 3 days upstairs and I can never remember to bring it down with me. But I will tomorrow and there will be a dirty little secret revealed.

Sacrifice

2009-10-30T16:01:00.005-05:00

For Christmas(so what if it's 2 months away?), my sister got 2 tickets to see Wicked tonight and I was the lucky one chosen for the second ticket. I had been looking forward to it for a few months until I realized it cut into my planned hermitude. I think I just made up a new word.

I guess it hit me about 3 weeks ago. I would be in a confined space with a possible 2000 other people. I don't know if I could ask them all to germ-x and to please leave the auditorium if they had been sick or had been exposed to any illness. I started having full out panic attacks - chest tighting, hyper-ventilating panic attacks - whenever I would think about going. What if the guy behind me was sneezing and coughing all night? What if a woman 3 rows in front of me had a child that had the flu last week? Could I really take the chance of being exposed to something when I am the primary care giver to my kiddo? The panic attacks told me no and I don't even want to know what I would be like today if I hadn't made the decision not to go.

Maybe if B-pants was a term baby that didn't have her current medical problems, I would have been more comfortable. Even though she didn't have any apparent lung problems at birth, she was still a preemie. I know the media tends to blow things out of proportion but this whole flu thing scares the poo out of me. Bailey's doctor has already informed us that if she gets a small cold, she will probably have to be admitted to the PICU. I don't even want to think about the flu. Blaine and I made the decision that I would stay out of any public or private places that were not controlled. Thanksgiving and Christmas? Luckily, we don't have a lot of family in the area. If we did, we probably would not be participating in the activites. I have taken some criticism about our decision but we feel we need to do what is best for Bailey. Blaine got a flu shot today. I feel terrible about asking him to get a flu shot but he did it because he knows we can't afford to have B-pants sick.

People aren't kidding when they say having a child changes everything and I think we are quickly learning what being a parent is all about. It 110% sucks having to stay in this apartment day in and day out. But if that's what I need to do to keep Pants out of the hospital, I'm going to do it. I don't know if I can do the visits to the hospital again so soon. In fact, I'm starting to tear up just thinking about it.

Cookie Fail

2009-10-28T20:49:00.003-05:00

I heart baking. We have generally have an excellent relationship. Yes, there was a mishap with some brownies about 10 years ago (time to let it go people!), but most of the time, we get along swimmingly.

I like to take recipes and edit them to fit the ingredients I have and it usually works out in my favor. There was one time where it didn't and I call it the kiss cookie fail. My mom makes these awesome cookies for the holidays with hershey kisses in them. I tried to make the same recipe but used the caramel filled kisses. Fail. The caramel filling melted the chocolate and they ran all over the pan.

I guess tonights mishap isn't so much a fail of the cookie but of the one who pulls them out of the oven. We have a bunch of pb cups sitting in the kitchen and I decided to make a chocolate cookie and add them to the dough. The first dozen came out really well - read: Blaine likes them. The second is currently sitting in the bottom of my oven. I have never dropped a pan of cookies. I probably should clean it up. But it will have to wait until Top Chef is over.

Well, That Was Interesting

2009-10-26T19:34:00.007-05:00

We have had a very interesting last few days. I guess it started on Wednesday with some serious exhaustion. From 11:00am Wednesday through 11:00am Thursday, I slept 16 hours. I did wake up around 10:00am on Thursday and take my temp because I don't usually sleep like that. I had a fever and felt like I was endangering Bailey's health so I called Blaine to come home from work. He also stayed home on Friday. By Friday night, I was going crazy sitting upstairs by myself. I may have demanded Blaine to take me shopping. We may have spent more than we should have. I had a fever through Saturday night with exhaustion as the only other "symptom" with which I am still having a problem.

Saturday morning, we left as soon as our nurse went off duty at 7:00am to go pick up my sister, Casie. She is currently residing at her college 2 hours away and has 2 flat tires. We went from picking her up to my grandma's house for Blaine's birthday celebration! We had brunch, played games, and didn't end up leaving until after 7:00pm! I will put a few pictures at the bottom.

Saturday night was the first time one of our nurses had to ask for our help. Bailey was extremely upset. He had tried for over an hour to get her to calm down and she wasn't having it. So he came downstairs at 11:30pm and I took Bailey and held her until 12:45am. When I put her in her crib, she had been asleep for 30 minutes, but woke right back up and started crying. M told us the next morning he had to hold her the rest of the night. We took Casie back to school on Sunday evening.

This morning, Bailey and I met with a nutritionist from Rainbows. Bailey's doctor isn't worried about her rate of weight gain, but our lead at Rainbows is, hence the nutritionist. We learned that Bailey is getting enough calories for her weight and the nutritionist isn't concerned either. I did learn how to tell when to increase her amount of formula - when she begins acting hungry 30 minutes before or after her scheduled feeding time, it is time to up the feeds. I also learned that I can add a teaspoon of Karo syrup to every other feeding when Bailey is constipated - like she is now. In the past, we have just added a little water to her formula and that would take care of it, but not this time. All-in-all, I would consider this visit a winner. She will come back in a month to check on her progress.

Happy Birthday, Husband!

2009-10-21T12:37:00.003-05:00

Blaine,

You are old!!! But it's ok - I still love you.

The last year has been an exciting one. You spent most of it taking care of your miserable pregnant wife. Then came our beautiful little girl. Watching the two of you together is incredible. I knew you would be an amazing father! We have definitely had our share of trying times, but we are finishing this year stronger than ever. I am so glad to have known you for your last 9 years, honored to be your wife for your last 3, and blessed to be mother to your child for your last 5 months.

I love you and...Happy Birthday!!!

Show Me The Money

2009-10-20T12:30:00.007-05:00

When Blaine and I *finally* got married in 2006, we began taking about me becoming a stay-at-home mom when we had kiddos. At the time, we were living with Blaine's parents in Amish country PA. Looking at living costs and guesstimating what Blaine's income might be, it would have been very difficult to survive in PA with only 1 income once we had a child. I missed my family and the cost of living in KS is well below what it would have been in PA. Those are the 2 reasons we chose to move back here. Blaine did have a job offer in Carlisle, PA on the table when we left for Wichita but ended up in a job that he loves, making the same amount of money. In Carlisle, an apartment comparable to ours, would run us an extra $500 more per month!

We, of course, didn't plan on having a special needs baby. Or plan for the medical bills that the special needs baby would rack up. Even with insurance and medicare (or medicaid - I can never remember which), we still have somewhere in the $4000 range of medical bills. Of course, we are fighting with our insurance company and so far we have had good results. And when I remember that Bailey is already a $400,000+ baby - its not so bad. We are getting financial help from Blaine's family to help pay for the medical bills. But things have been tighter than we would like to admit, which has lead us to make quite a few changes in our lifestyle. If we wanted something before - we would go and get it. Not anymore. I'm not much of a cook, so we ate out alot. Not anymore. New clothing - forget about it. My beautiful 24 hour soccer channels - gone. That new computer monitor Blaine wants - negatory. Air conditioning or heat - not unless we can't stand whatever extreme it might be.

I have started coupon hunting, meal planning, bargain shopping, and only drinking 1 can of my beloved Dt. Dr. Pepper a day. I think meal planning is the biggest money saver we have found. We have eaten out 4 times in the last month and had a gift card to cover one of those meals. The other 3 times - I didn't have anything planned or forgot to take something out of the freezer. Planning has made our grocery bill drop significantly. Before planning, we were averaging $400-$500 a month in groceries. This month, we are spending close to $200. When you have a list, you don't pick up the random things that no one should really be eating anyway. This month I have been able to make double of some meals, so we have a few meals in the freezer if I don't feel into cooking. For November, I am going to try planning for the entire month instead of every 2 weeks (or by paycheck). Hopefully, this will cut down the bill even more.

We are ending this month with some money left in the bank, thanks to birthday cash. We are hoping between the extra cash and saving around the house, we are finally getting to the point where we feel like we can breathe again. I'm sure this kiddo would like her parents to be feeling less stress.

Vaccinations & Nursing

2009-10-19T14:33:00.006-05:00

Back in June, when we found out we qualified for home nursing care, we were pretty excited. I was having mini panic attacks about having to do an emergency trach change while half asleep. Of course, to do that, I would have to wake up first and I am a deep sleeper. I sleep through alarms, phone calls, and my husband getting ready in the morning on a regular basis. Did you know that an alarm clock runs and runs and runs until someone turns it off? I didn't either until one day when I woke up 3 hours after the time it was set for and it was still beeping at me. I am useless in the morning. But back to the nursing...

I am glad that a nurse comes in every night and takes care of Bailey. After she came home, Blaine and I were never sleep deprived like most parents and I didn't have to worry about emergencies. Of course, almost everything comes with strings. It's paid by medicare, which equals government. If I had read the fine print, I would have realized Bailey was required to have her vaccinations on their schedule. My entire pregnancy, I wavered between not vaccinating or delaying until she was 2 years old and only having 2 shots every 2 months. So what did we do? We talked with Bailey's pediatrician and compromised to go ahead and begin vaccinations but having only 2 shots each appointment. There is a point to this story andI will come back to it.

Bailey has her monthly check up with the Doc and 2 weeks laster she also has a monthly check with the nursing agency. She has bi-weekly check ups. The nursing agency also comes every week to check her weight. She had her nursing check today - normal heart and respiratory rate, normal bowel sounds - everything is good. She is 59cm or 23 inches long and weighs 9lbs 2.5oz. After the nurse checks her out, we get to have a fun question and answer session. How many dirty diapers a day? 7 or 8. Are you using the apnea moniter? no. Any new medication? no. How much and how well is she tolerating her feedings? 75mL every 3 hours and well.

And then comes the dosey. Are her vaccinations up to date? I have answered yes for the last 4 months because according to my schedule, she is ahead. According to her doc she is up to date on the schedule we agreed upon. So is that lying? Maybe. But, frankly, I'm not sure I care in this situation. I feel there is compelling evidence that the increase in vaccinations, plus the rate at which they are given, leads to a variety of problems - autism, adhd, asthma, sids, various cancers, type 1 diabetes, excema, seizures, etc. Even the FDA admits that the CDC under reports adverse reactions by up to 90%. According to the government schedule, by the time Bailey is 6 months old (2 1/2 weeks), she is to have 25 shots. She will have 7. And I will continue having no problem saying 'yes' to the vaccination question every month.

Growing Up

2009-10-16T12:18:00.005-05:00

I packed up my first box of Bailey's clothes last night. I packed away all of her newborn sized onesies and anything summery in u-6 month size. The weather here has been under average temps for almost 2 weeks. I'm not ready for winter and Bailey didn't get to wear all her cute summer things because of her smallness. I was thrilled that she has finally outgrown most of her newborn clothes, with the exception of pants, and they are still a little big. But it means she is growing up.

I really only packed up the stuff because our 3 month drawer was getting too full - in fact, it now takes up 2 full dresser drawers. I really didn't think it was a huge deal just to pack up some clothes, until I started. No crying took place, it wasn't THAT bad. But it was definitely rough. I feel like I shouldn't be upset, I mean, we are waiting for her to grow so that she can live a normal life. Shouldn't I be beyond thrilled that she is finally showing growth? I want her to stay little forever, but then she wouldn't get to live the life we all want her to live. Eating normally, breathing normally, speaking, hearing clearly - hopefully, all these things will happen when she grows enough. Does packing away the clothes get easier as they get older?

Forgive the quality...

2009-10-14T20:03:00.001-05:00

Please pray

2009-10-13T18:51:00.003-05:00

USMNT forward, Charlie Davies, was in a car accident this morning with 2 other people. A young woman died and I haven't seen any updates for the 3rd person in the car. Charlie went through 6 hours of surgery and is now listed in serious condition.

The US soccer community is fairly tight. It's not like basketball or football where 98% of players want nothing to do with the fans. They seek out the fans after games, visiting bars were the groups gather. If they are suspended, they sit and cheer with the fans, not in some luxury box. As what some would call a fanatic, I feel personally connected to each and every player. I refer to them by their first name and act like I know them IRL. They are accessible on a level that other sports figures are not.

Please pray for Charlie - none of his injuries are life threatening but could be career threatening. For someone who has grown so much in the last year and is slated to start for the US in the World Cup next year this would be devastating. Also, pray for the family and friends of the woman who lost her life and the young man whose status is unknown.

More info here.

Still Moving

2009-10-12T21:02:00.003-05:00

The hyper-motivation has continued. What have I done today?

I made and ate 3 meals.

I held Bailey while she ate - 45 minutes every 3 hours.

I did a load of laundry - there is no dirty anything left except what we have on now.

I made 5 dozen pumpken chocolate chip cookies and nutmeg frosting for the dozen that aren't residing in the freezer. We won't talk about how many I ate...

I finished cleaning the living room.

I ran the dishwasher 3 times.

Did I mention we (Bailey & I) didn't get out of bed until 11:00am?

Just 2 quick notes about B-pants. She has finally hit 9 lbs!! Hopefully we can get the next lb faster than the last (10 weeks). I also think she is going through a growth spurt. After I wrote about her "new"sleep schedule on her 5 month post, she decided to throw me for a loop and go back to sleeping 18 hours a day for the last week. The weather decided to be a pain in the rear for the last week and it's cold! We decided to try out a 0-3 month sleeper last night. The result -

Hyper-motivated

2009-10-10T13:28:00.003-05:00

I have been feeling hyper-motivated this week. Cleaning, re-arranging the living room, laundry, cooking and baking, picture printing and hanging, and reorganizing the kitchen - all while taking care of the kiddo. I'm sure Blaine would appreciate it if this was the norm. but its not. My cleaning bug comes in waves. It takes frequent vacations for several weeks at a time. But look out when it comes back. Everything must be clean.

In the last 30 minutes I cooked lunch, loaded the dishwasher, and started more laundry. Did I mention the fact that when Blaine took his plate in the kitchen and put it on the counter, I *politely* reminded him the dishwasher was dirty? Also, this morning I printed out 9 pictures (including 3 from the wedding last weekend), framed them, and put them on the wall. Bailey's room is also all cleaned up. I am thinking about sending Blaine to BRU for a great deal on diapers and a few more adorable bins that are on clearance. Or maybe to Wal-mart for some canned pumpkin and eggs. I feel like baking...I'll take pictures. But this one is from the wedding...

I love TV

2009-10-08T12:47:00.004-05:00

There really isn't any type of television I won't watch. I would say 24 hour news stations but I even flip over to those every once and awhile. If there is nothing on that I want to watch, I flip over to ESPNews and let it run through every story at least twice before I find something else. Some of my favorites are Glee, American Idol, Arrested Development(RIP), Project Runway, Top Chef, Bones, Grey's Anatomy, Scrubs(RIP), Private Practice, The Office, House, Wife Swap, ER(RIP), Intervention, Mystery Diagnosis, The Biggest Loser, etc...See what I mean - that list could keep growing. My great-aunt has been in town the last few days and we had dinner last night. While I had a great time, I couldn't help but wonder about was what was happening on Glee and if I might miss part of Top Chef.

Tonight is a big deal. I don't know if you've heard, but...Jim and Pam are finally getting married tonight on The Office. Blaine and I always watch it together but probably not tonight. Why? Because there has been a preview out for a week and no matter how many times I see it, I tear up. What happens when I tear up or cry at TV? Blaine laughs at me. I keep telling him its the mommy hormones because I rarely cried(I count maybe 3 times) at tv before I got pregnant. Private Practice last week - totally cried.

So what's on tap for today? Trying to finish the living room re-arrange, attempting to better some wedding pictures from the weekend, and then Bones, The Office, and Private Practice. And tomorrow online - Community, Grey's Anatomy, and Flash Forward.

5 Months Old!

2009-10-06T23:47:00.004-05:00

How in the world is our beautiful baby 5 months old?!? I mean, seriously? That can't be right, can it? It seems like just yesterday I was being wheeled into the NICU to see her for the first time. I told Blaine the other day, I can't remember what it was like before she was born. Of course, his response was "It's ONLY been 5 months. It seems like so much longer than that." - that's my husband. I'm sure life was less stressful but not nearly as fun.

Bailey has been up to a ton of stuff this month! The biggest is learning to sit on her own! She has been working out her stomach muscles launching herself forward and I'm pretty sure you can see a six-pack. She can grab my fingers and pull herself to where she is holding herself up and can stay, holding my fingers, for almost a minute before she falls to the side. But she brings her back up pretty quick! She can sit leaning forward by herself for about 15 seconds. And then her head is on the floor between her feet. Speaking of feet, she found them this month! She really isn't too sure about them, yet.

She grabs at everything, with accuracy, and attempts to put everything in her mouth. Rolling from her back to her stomach is getting much more frequent. We are fairly sure she recognizes her name - when she gets upset and we say her name, she calms down. She loves when Aunt Casie sings to her, especially anything from Wicked. She is definitely know who takes care of her all day - every time I hand her off to someone or put her down. she looks for me. Melts my heart. If she isn't crying or asleep, she is always smiling. She is awake most of the day now - she wakes up around 9:00 and is usually up till 1:00 and then naps till about 3:00 and is up until 8:30-9:00ish. There are days when she sleeps more but this schedule has become her normal. She sucks on her entire hand when she is hungry and only her thumb when she is tired. When she is on her stomach, she is working on getting her legs up under her in a feeble attempt to crawl. She wiggles and gets wherever she wants to go, which is usually out of the diaper I am trying to change! Here are some pictures in her wedding attire that was purchased that morning. Please ignore the snot, I was busy trying to capture adorable pictures.

10 things I love this week

2009-10-01T13:54:00.002-05:00

Things have been pretty hectic around here, hence the lack of posting. Between early nurses, doctors appointments, knee injuries, dinner planning and making, my new found appreciation of coupons, upset baby, and trying to keep this apartment clean - blogging is the one thing that dropped off. This weekend won't be any better but hopefully things will slow back down on Monday. But a quick list of things I love about this week.

A year ago Tuesday, I found out I was pregnant. Even though things didn't turn out exactly like we thought, it was still a happy day!
Tomorrow is my birthday!! I will be 26 and that number frightens me but if it comes with cake, especially angel food cake - sign me up.
Saturday is my Uncle Greg's wedding. It will also be the first time I have photographed people where the pictures matter. I put Bailey in her outfit this morning and it's not going to work. I don't know that a mooning baby is included in their plans. Plan B doesn't fit either.
Old Navy. I've always loved Old Navy, but this week, it is soothing my fears that Bailey was going to freeze this winter. The baby shower that Blaine's coworkers threw us was incredible - so many clothes - but it was in May. Not a whole lot of winter clothing available in May. I bought her a coat but I bought it in a 3-6 month size thinking she would continue growing at the rate she was a few months ago. Not. So 4 pairs of pants, 4 long sleeve onesies, an adorable coat in the right size, 5 pairs of socks (3 of which I am making into baby legs), and a jacket for me ~ all for $80!! I love you, Old Navy!
Kiddo is sitting up by herself for about 45 seconds at a time now. Pretty big deal.
Coupon hunting. This could get out of hand but, frankly, we are hurting for money. 1 income would have been fine if Bailey wasn't already worth $300,000+. Did you know K-Mart is doubling this week? I'm afraid I'm going to turn into that one mother on Wife Swap.
Glee. I LOVE it! And Kristen Chenoweth. Oh my god! Awesome!
When Bailey isn't balling her face off - she has been so happy! Smiles all the time. And by all the time, I mean the 10 minutes a day she isn't crying. And then Blaine comes home. And she doesn't cry. Awesome.
I love the way every time I hand her off to someone or put her down, she looks for me. Melts my heart.
Blaine came home for lunch. I love my husband.

1 Year Ago

2009-09-29T13:52:00.002-05:00

1 long year ago today, we found we were being blessed with a baby. While I felt like I had been ready for a baby for awhile, I was terrified. I tried for what felt like an eternity, but I'm sure it was only like 10 minutes, to get ahold of Blaine. Then my mom called. I was still crying and probably shouldn't have answered the phone but I did and spilled my guts. Poor Blaine was the second person to find out he was going to be a father. Little did we know that this long year would be full of the best and worst days we have had together. Blaine, we made an adorable baby together and I love you more after the last year than I ever thought possible!

Smooth Move

2009-09-25T08:22:00.004-05:00

My grandpa's nickname for my mom when she was younger was Grace. Even though I was blessed with a large amount of athletic prowess (yes, I'm bragging), I still inherited the clumsiness. This, and the fact that I chose soccer as my sport of choice, made for a number of injuries - broken toes, pulled muscles, several assumed stress fractures, uncountable shoulder dislocations, an unexplained right knee problem that caused me to wear a brace for several years, so many ankle turns that I basically have no ligaments or tendons left~I can turn both ankles in to where the bones on the outside of my foot are on the floor and can do the same turning them out.

While I never had an injury to serious for me to stop playing (I'm just a TINY bit competitive), I probably should have. My knees are paying the price. Specifically the right one. Every once and awhile it remembers what I put it through and gets angry. Angry enough that I am afraid to walk. July 4th weekend 2008, I was playing basketball and very casually turned around to get the ball, and it went pop. I couldn't put any pressure on it for 2 days and, for about a week, it felt very loose. Like at any second, it was going to give out. I had to think about every step so that it didn't hyperextend. Well, after a year and change, it remembered again last night. I was getting into bed and pop. It hurt worse than I remembered. Blaine quickly got me some tylenol and a pillow to support it and when the pain killer finally kicked in I was able to sleep. This morning, that wonderful loose feeling is back. The pain has subsided for the most part and for that I am thankful.

Bailey had a doc appointment we had to reschedule. She was due for 2 more shots and Blaine didn't want to get on the highway and have her upset while he couldn't do anything. We have an upstairs bedroom. Blaine had to go to work. He brought me breakfast, a big glass of water, my beloved Dt. Dr. Pepper, and my computer. He also brought in Bailey's feeding pump, suction, diapers, wipes, her extra trach, enough formula to last the day, and a few toys. I have a tv and some movies, the bathroom is next door. Did I mention the dog? This little buddy will have to wait to go out until Blaine gets home. I guess it won't be too bad but ask me again around lunch time!

Emotional Day

2009-09-22T22:06:00.003-05:00

This was one of those days. The days where it takes nothing to make me cry. Tears running down my face, ugly crying. I was not like this until the wonderful pregnancy hormones kicked my butt about 10 months ago. Anyone who knows me can testify to the fact that I hate crying and hate even more when it happens in front of someone. Even my poor husband who still doesn't know what to do when I get upset. It's my fault, really. I don't communicate well - it's a family thing.

Back to my point...someone should have told me having a kiddo was going to do this to me. We can add that to the list of things I wish I had known. I think that's part of a song. There are things I shouldn't do on days like today, things I know will trigger another "attack". Watching anything to do with babies is a big one- this isn't limited to shows about babies, even diaper commercials get me. I should really just stay off the computer on these days because I tend to look for new blogs to follow and the ones I tend to find are rough. I saw a prayer request for this blogger. I sat and read the whole story while balling my eyes out and hugging my baby so tight she was fighting me. Sometimes I forget how blessed I am and it shouldn't take stories like this to remind me. Which makes me upset and I cry again. But tomorrow is a new day...

Getting to know us

2009-09-20T13:49:00.008-05:00

So I realized that there really is nothing about us on this page. Not a big deal, but I thought it might be nice to let whoever is reading this get to "know" us. So, how about Blaine first.
Blaine was born in Portland, Maine. His parents were in the Peace Corps and he lived his first 5 years in various spots in Africa. During those 5 years, he gained a sister, Brianna. His family moved back to Maine where his dad got his doctorate in Forest Economics. They moved to the Florida panhandle when Blaine was 11. He played baseball and soccer, and tried to play football but he refused cut his hair. He is an Eagle Scout. He graduated high school in 2000. He started college at University of Central Florida and his family moved to South-central PA.

I was born in Wichita, Kansas. And stayed put, for the most part - 4 houses in 18 years but all in Wichita. I gained a sister when I was 2, Casie; and one when I was 8, Randi. I started playing soccer when I was 7 or 8 and played until I was 18. I tried other sports, but soccer was the one for me. We had lots of dogs - mostly German Shepherds, which my dad trained for Schutzhund. He was diagnosed with colon cancer in, I think, '92 which metastized to his liver. After a long fight, the cancer won in 1999 when I was almost 16.

2000 is when we intersect. I was on some chat room and saw someone named Blaine and thought it was a nice name. So I started up a conversation. We talked over the phone for almost 2 years before Blaine came to see me graduate high school in 2002 and meet my family. He stayed for 2 weeks before he had to work at a Boy Scout Camp for a month. I decided during that month that I would move anywhere to be near him. So on July 9, I left my family and the only place I had ever known to be with him. We were in Florida for a few days, fixing up the house to be sold and then drove up to PA. We lived with his parents the entire 6 years we were there. Blaine went to a tech school for IT and finished - worked a contract job at Hershey Foods. Then decided he should go back and get a degree. On Valentines Day 2006, after I asked him why he hadn't purposed, he did. We were married in May of that year. He (finally!) finished his Bachelors degree in IST in 2008. I spent that time working in the office at a country club. I missed my family and Blaine didn't really call anywhere "home". So we decided to move to Wichita in March 2008. Blaine got a job in June and we moved into our apartment in August. Got pregnant in September, baby in May and here we are!!

Quick and to the Point

2009-09-18T21:35:00.003-05:00

Bailey found her feet. She was very suspicious of where they came from. She still isn't sure if they are friends or enemies.
She is working on sitting up by herself. If you aren't paying attention, she will launch herself right out of your lap.
She lost weight over the last 2 weeks. Not sure how that happened. We have upped the amount we are feeding her each week. Apparently, the doctor may want to see her or at least talk to us.
Our nurses are now coming at 9:00pm and leaving at 7:00am.
Wednesday was the worst day in a long time. I had a sinus headache when I woke up, Bailey was upset all day, and the dog decided he needed to be sick. And I don't mean he threw-up once, I am talking about 8 or 9 times - all over the apartment. I finally trapped him in the kitchen - tile no carpet.
Said sinus headache - still hanging around.
We are getting rid of our cable this weekend :( It will save us almost $350 before we have to get it back for the World Cup next year.

Just a few things

2009-09-15T10:51:00.007-05:00

In August, we had 2 weeks with no nursing care. We found out exactly how spoiled we are when we had to take care of Bailey every night. She sleeps all night but we still have to get up to hook up her feedings every 3 hours and suction her whenever she sounded junky. The agency finally found someone to take the place of our normal nurse, K, whose mother passed away. M started 2 weeks ago. K was able to come back to work on Sunday. I got a call this morning from the nursing coordinator who wanted to know if we liked working with M better than K. Apparently, M has called the last 2 mornings asking if there was anyway he could keep working with Bailey. He misses her. We have nurses fighting to take care of Bailey. So I guess the story with home nursing is feast or famine.

We brought home Bailey's swing on Saturday. She is loving it but I think I am loving it more. I can actually put her down and she doesn't cry! My hubs will love the time I have to clean and stuff...maybe we will keep the not crying thing under wraps!

My 26th birthday is in 17 days. Holy crap. 26.

My birthday list includes a Nikon D60, Canon Digital Rebel XS, or any number of lenses for my current Canon S3.

My uncle is getting married in 18 days. I am the photographer. Yikes.

I have a love of all thing medicine so we watch a ton of medical shows. Has anyone noticed that every interesting medical case is in England? Do we not have weird medical conditions here? Or are we just to embarrassed to air it?

I Didn't Know I Was Pregnant - bull honky, its called denial

Just playing around with the invite for the said wedding:

Pants

2009-09-13T19:24:00.004-05:00

So around here, the kiddo gets called Bailey most of the time but...we love nicknames. And hers really make no sense. My youngest sister and I decided Bailey's first word needed to be pants and things went downhill (or uphill, whatever) from there. I am constantly calling her Bailey-pants or B-pants for short. Blaine called her wiggly squirrel earlier. Anyway...

We went to the drive-in last night, and since we have no nursing care on Saturday night, Bailey went with us. The weather was supposed to be on the cool side so I decided she needed to be dressed in more than just a onesie. That led to Bailey-pants first time wearing pants! I know, not really a "big" first, but when your nickname involves a piece of clothing....it kinda is. I think she looked longer with them on and, as always, she was adorable.

Miracle

2009-09-10T21:10:00.007-05:00

So I don't know if you've noticed but...I think my beautiful baby is a miracle in every sense of the word. All the way from conception to birth - miracle. The medical problems? I'm beginning to come around to the idea that they are also a miracle. Don't get me wrong, I in no way wanted Bailey to be anything but perfect and could never wish the things she has already gone through/will go through in the future on my child or anyone else for that matter. Stick with me on this one - it will come back around.

When Bailey was at TCH in Denver, we met a ton of doctors. They all were very polite - they introduced themselves and the next thing they all wanted to know was who put in Bailey's trach. I would tell them and they all had the same reaction - I needed to find the doctor and thank him. Thank him for saving my babies life. I can honestly say that I never thought she could have died. Even the first time I saw her (I say saw her - I could barely look at her) just laying there not moving, still not woken up from anesthesia, I never actually thought she could have died. Of course hearing over and over that I needed to hunt down Bailey's surgeon and give him a huge hug - it totally sank it. There are only 2 pediatric surgeons in town - 1 of them happened to be in the hospital at just the right time. I just figured that trach babies were something that our NICU had dealt with, not often, but more often than we found out. The previous baby that went home with a trach was 2 years ago. I guess most babies with "serious" problems are born in Kansas City. These facts are no longer lost on me. The fact that our Bailey is breathing and squirming around today is a miracle.

As for her medical problems, I am definitely coming around to believing that they are also a miracle. I know God uses people, and I believe He is already using Bailey. She has already made such a huge impact on my life. I know that when you have a baby, you change, but I feel like there has been a profound change in me. I have never been a strong person, someone who could handle anything thrown in this direction. Even when the smallest things would come up, I would shut down. I hadn't really had any "trials" to test myself, except the cancer that took my father, and even then I was only 15. If you had to pick someone who you think could handle a special needs baby - it wouldn't have been me. Blaine says we do what we have to do, but I think its more than that. I have changed. Honestly, bring it on. The surgeries Bailey will have to go through in the future will be very difficult for me to witness(worse for her, of course) but I know I am strong enough to handle it. There days when I am hooking her up to her feeding pump where I remember that its not supposed to be like this; my child shouldn't be in this condition. I have a little pity party...and then I look at her beautiful blue eyes. And I remember that she is a miracle. A gift. I love my beautiful baby more than anything and I love the person she is making me.

Small Things

2009-09-08T22:15:00.002-05:00

Bailey made it to 2 weeks with no trach change! I found out that day we are supposed to change it weekly. Oops.
It rained alot last night. And kept me up. It rained all day. I am tired.
While I was awake, Bailey's apnea moniter went off. I flipped out. It didn't more than 5 seconds and said Low Heartrate. Her limits are set at 80 and 225. I think babies resting heart rate should be around 120? I thought about calling the doctor but its the only time it has happened but maybe I should.
Bailey's yeast infection is getting better, now that we are giving her the correct amount of medicine. That's right, I was giving her the wrong amount. You would think I would know how to read medication and translate that to a syringe, but nope. She was to be getting 1mL...I was giving her .1mL. Smooth move. We decided not to tell the doctor about this little mishap.
I talked to Blaine about him getting a flu shot - not the new H1N1 shot but just a normal one. He works at a college and if Bailey gets sick - she goes to the PICU.
We decided that Bailey and I will be hermits starting in late September through at least February. Only places we will be visiting is the doctors office and my moms. The doc has told us that because of Bailey's situation we won't be going in as often as we have (once a month) and they will work us in either before or after normal office hours.
It's still raining.

4 months old!

2009-09-06T15:10:00.002-05:00

Our little Bailey is 4 months old! She weighs a whopping 8lbs 9.5oz! She is still in newborn diapers but not for long. She has worn three 3 month outfits and they are still pretty big on her. She can roll to either side and from her stomach to her back. She still manages to find her way from her back to her stomach every once and awhile. She "found" her hands this month. Sometimes she just holds them up and watches them. She also is bringing her hands together - not sure why but apparently this is a big deal. She sucks her thumb when she is trying to go to sleep. Sometimes she tries to get both of them in there! She loves sitting up, with support, so we bought her a high chair. She has been in it a few times and lasts about 15 minutes before she gets upset. When she is on her stomach, she likes to throw her arms out to the side and do her best seal impression - bringing her head, shoulders, and legs off the ground. It reminds me of these reverse crunches we had to do for soccer. She is grabbing and holding onto things. Her little hands are so small we have trouble finding things for her to be able to grab. She loves bouncing on our legs so we would like to get her a jumper but she is so small we would have to pack blankets into the seat so she would stay in! She sleeps through the night - only waking around 3:00am and staying up for about 5 minutes. We had our 2 longest streaks of no trach change this month - 6 days and then a whopping 2 full weeks! She is getting so much stronger! Happy 4 months Bailey!

Recounting my pregnancy

2009-09-04T13:16:00.008-05:00

I guess I should start this out saying that I have had a good deal of anxiety and panic issues since, oh I don't know, Jr. High. I also have some minor control problems. It flows right along with my family history of OCD. Also, this is mostly so I have this journey written down.

So when I found out I was pregnant in late Septmember, the 29th to be exact, I was terrified. Blaine and I had been talking about adding to family for quite awhile but didn't think it was possible, w/o medical intervention, due to my PCOS. In fact, about 5 minutes after I took the test, my mom called and I just blurted it out while I was balling. I hadn't even told Blaine - I couldn't get ahold of him. When I finally got ahold of him, all he said was "ok, well ok" and that was the end of the conversation. I furiously refreshed on the rate of miscarriage before 12 weeks for someone with PCOS - 50%. Needless to say, I reminded myself of a daily basis that "it" probably wouldn't stick so there was no need to get attached. I basically put myself on bed rest with the intention to stick with it until 12 weeks. We had decided to wait to tell family (other than my mom) until I hit that mark, if I made it that far. That really didn't last, not even a week- I ended up telling one of my sisters...and then the other. That next weekend we told Blaine's family. His sister guessed, his dad asked some interesting questions, and when we were sure his mom would cry - she didn't.

I finally picked a doctor and went for the first visit in late October at what we thought was 9 weeks. Uneventful visit - didn't even get to see the doctor. By this time, I had every symptom in the book. My morning sickness was terrible. I would like to talk to whoever decided to call it morning sickness and try to trick all pregnant women into thinking it was only in the morning...I think I would punch him/her. I was prescribed Zofran and popped that stuff like it was going out of style all the way through mid-December. I also had excruciating pain on the lower left side of my torso. It would come and go but the pain was so bad, there were days I had to call Blaine home from work. It lasted the entire pregnancy and I never got an answer on what it was - it felt like ovulation pain but like 800x worse. At the next appointment, I met my doctor - she walked out without asking if I had questions. Not a great first impression but she did schedule an ultrasound for the next week - what we thought was week 14. I was really excited to hear the heartbeat and see what kind of monster was making me feel the way I did. And the next week, we saw "it", there "it" was, on the screen but still not so real in my head. "It" only measured at 11 weeks. We also didn't get to hear the heartbeat. I had relaxed a little bit between when I thought I was 12 weeks and the ultrasound only to be thrown back into the danger zone, if only for 1 more week. Finally, in mid-December, I started to feel better. I remember the first time I felt "it" move - we were at my sisters birthday dinner at Sumo (yummy!) exactly 1 week before Christmas. I think it was also around this time I first called "it" a baby. I had another doc appointment with not my doctor and scheduled the big ultrasound for the beginning of January. This appointment was the first time we heard her heartbeat. We found out it was a girl and were told everything looked great! So I let down my guard - we went shopping and purchased our first baby things.

And then came the call. I was sleeping and my doctors office left a message. It went something like this - your baby has 2 of something and she should have 3, we scheduled an appointment for you at MFM in 2 weeks - seriously? That's considered an acceptable message? When I called, I didn't get any more detail. So I freaked out, started researching what she could have 2 of when she should have 3, wondering if we could take a purchases back to the store. My MIL is the one that figured out they must have meant a 2 vessel cord. I found out that could be really bad or really nothing at all. Being the person I am, I instantly thought she had a major heart defect and was going to die. Two long weeks later, all they found was her chin was recessed. Next up was my 1 hour glucose test with my normal doc - not as bad as I had heard - she said they would call if I failed. They didn't. We waited and waited on pins and needles for the next MFM appointment 4 weeks later. Her chin was still recessed and I was diagnosed with polyhydraminos aka ridiculous amounts of amniotic fluid. The MFM thought it would be a good idea to do an amnio...10 minutes later. No time to prepare myself for the giant needle being inserted into my stomach. They said my normal doc would call with the results. Got the all clear on those results less than a week later.

Saw my normal doc at the beginning of March, she wanted to know why I hadn't done the 3 hour glucose test. I told her no one called. She apoligized and told me I failed. Awesome. This one was terrible. I definitely felt like I was going to pass out a few times and had both arms poked. Called the next day because I didn't trust them to call me with the results - passed. Next MFM appointment, they found an ear deformity. She said there were 87 different diagnoses (who knew that was the plural of diagnosis?) for recessed chin, ear deformity, and 2 vessel cord. They set up an appointment with the Genetics department at Children's Mercy in Kansas City. I called them to find out what was to happen during the appointment. They wanted to have a conversation. No testing for Blaine and I or for the baby. They wanted to have a conversation to go over family history. We had given our family history to both doctors, what more could they want to know? We decided it wasn't worth 6 hours of driving and Blaine taking a day of work to have a conversation and that's what we told both doctors. They respected our decision and both told us we were the most prepared and realistic parents-to-be they had worked with.

We started having Bio-Physical Profiles weekly at 28 weeks. Sometimes it would take her a little bit to show us her breathing but she always got 8 out of 8. When we saw my normal doctor in mid-April, my uterus measured at 54 cm. She told me I measured the same as a woman who had just given birth to triplets and that I had the 2nd biggest measurement she had seen (63cm). She talked about the risk of a prolapsed cord, which I already knew about and was pretty much terrified about - call 911, then call Blaine. We also decided that a C-section was a smart decision. With the amount of fluid I had, she probably wouldn't be able to engage. She told me to watch out for decreased movement. I laughed. I was lucky if I felt her move once a day. How in the world was I supposed to tell I she slowed down? When we met in the last week of April, she didn't even measure me and told me she would probably see me at the hospital before our appointment the next week. I put myself back on bedrest determined to make it at least to 36 weeks.

The night of May 5, I decided I couldn't do it anymore. I couldn't deal with not being able to breathe or move. I was going to cancel my BPP appointment the next day and call my doctor and demand they take her out ASAP. But I didn't. Something made me go to that appointment. She failed her BPP - she got a 0 out of 8. Her heart rate was down around 110 - it had always been around 145. It went up but then back down. She didn't move or practice breathing. The tech called the MFM doc in and gave her the results. She told us to go straight to the hospital and get checked-in immediately. We were having our baby today. We got to the hospital around 8:30am. By that time, at least 2 phone calls had been made to my normal doc. I changed into my gown and had 4 different people asking me questions, 1 trying to find kiddos heartbeat, and another starting an IV. They had to use an ultrasound to make sure she was still there - she never showed up on the moniters. As I was walking back to the surgical suite, the only thing I could think was that we didn't have the camera...we wouldn't have used it anyway. I got up on the table and they placed the spinal. The anesthesiologist kept asking me if my blood pressure had been high, I kept saying no. I layed down, the put the drape up and we waited. My doctor still wasn't there. She finally came in and said "You ready to have a baby?", I didn't answer. Blaine said when they broke my water, everyone was wading in it. Awesome husband. My blood pressure dropped immediately. She was finally born at 11:00am.

So what did we learn? Being paranoid and pregnant is bad. Everyone telling it to relax and enjoy my pregnancy had no idea how I was feeling and, frankly, it got annoying. I wanted to yell at them. I didn't know how much clearer I needed to be when I said "Look, I am pretty sure my baby is going to die" or "Can you please take this huge pile of baby things out of our apartment so I don't have to look at them while my baby dies inside me". Also, I will have a different doctor with the next kiddo. She was terrible, I only saw her 6 times and there at the end we were going every 2 weeks. She never returned phone calls and when she did she gave really crappy answers. I called once because I thought I might be in back labor. Her answer - don't lift anything over 20lbs and don't wear high heels. Awesome.

Cankles

2009-09-03T13:43:00.003-05:00

I did it

2009-09-01T12:21:00.004-05:00

Bailey had her swallow study today - something I have been looking forward to for quite some time. Our insurance company is actually owned by a hospital group so we always go one of those hospitals. St. Joseph has the NICU and St. Francis has the PICU. I thought the study would be done at St. Francis...and I was wrong. It was at St. Joes. I have had less than zero desire to ever visit that hospital again. Spending 40 of my babies 47 first days (7 at TCH in Denver) in that hospital was more than enough. I was, needless to say, concerned about how I would react.

We pulled into the parking lot and I could feel it; that familiar tightning in my chest. Waking up to the doors it got worse, I just had to remind myself to take deep breaths. As Blaine checked her in, I had a conversation with a woman who had her last baby taken away 4 years ago because she was on drugs. But she was headed up to labor and delivery to have a baby girl and she had been clean for a year. No real point to this story just suprising how much information some people are willing to share with a complete stranger. When we got to the radiology waiting room, I noticed my hands were shaking and a rash I get on my hands - when I am stressed - was starting to pop up.

We were called back where we met up with Bailey's speech therapist from the NICU, Angela. She explained the procedure and when the radiologist was finally ready, they strapped her into a little seat and got started. It didn't take long. They found that most of the barium just came right back out of her mouth. But a little went up into the back of her nasal cavity and then down her throat. So we found out there is a connection between her nose and mouth. Basically, when she finally has her jaw fixed, she will need to go through the procedure again. BUT...we got the ok to try a little bit of water by mouth!

Next, we went up to the NICU to visit our old pals. That elevator door came open and the smell hit me. Cue minor anxiety attack. Just took a few deep breaths and forged ahead. While Blaine called back, I tried to clean up the barium that was all over the front of Bailey. I thought we were just seeing a few nurses that took care of her - silly me. It felt like the entire staff came out! She was still awake and showed off her head control and checked out everyone! They took a few pictures and ooh'd and ahh'd all over her. I guess we were up there about 15 minutes before everyone had to go back to work.

Even though I had a little problem being there, I am glad I was able to go. Being there for even just 40 days, those people became part of our lives and we will never forget them and all they have done for us. They took care of our baby when we couldn't, keeping her alive on multiple occasions. I'm not really sure how to show my appreciation for something like that - a card certainly doesn't seem like enough. If they would like to see her every few months, that's something that we totally want to happen - as long as there is no flu outbreak!

Time for something lighter

2009-08-31T10:38:00.006-05:00

We bought Bailey a high chair. The girl loves to sit up - with our help, of course. Her head control is, according to our Rainbows peeps, incredible. I guess not all babies born premature have developmental delays.

Which brings me to my next point. I would like to get Bailey a jumper or exersaucer but because she is small (8lbs 6oz), is much more difficult. If we buy her one, we would have to stuff in crazy amounts of blankets for her to fit. Not to mention the phone books under her feet so she could jump. When I read the info about all the different models - they say for 4 months to 1 year. My baby is almost 4 months old but because she is small, she doesn't have to the opportunity to use the different toys or development tools as other babies. She is still really small in her bumpo. But we haven't let that slow her down and don't plan on starting now.

In other news, it has been 9 days since Bailey's last trach change!! We have been averaging 3 days. It is the first time we have been over 6 days and that only happened once. When we hit 7 days, I started to wonder how often we are supposed to change it. The hospital here recommended every week but Childrens in Denver said every 2 weeks. I'm planning on letting this one go until she starts sounding like a goose/trumpet or the 2 week mark, whichever comes first. I'm hoping for the 2 week mark!!

PTSD

2009-08-28T17:25:00.006-05:00

So as I sit here, wating for my husband to bring me the final ingredients for dinner, I find myself thinking about an article I found today from the New York Times. It is about 2 studies that followed parents of NICU babies and studied their emotional state, specifically looking for instances of Post-Traumatic Stress Disorder. Nightmares, flashbacks, depression, anxiety, and anger are just a few ways PTSD can rear its ugly head.

The article mentions that alot of NICU babies are delivered by emergency c-section. I never viewed my c-section as traumatic ~ I was going to have to have one anyone because with all of the extra fluid my doctors didn't think there was any way she could "engage". Maybe I didn't expect it that day but I was going to demand it the next so the timing wasn't hugely unexpected. Would I rather have labored and had her the way I wanted? Absolutely. But the c-section was what was best for her.

Now, I have been known to self-diagnose from time-to-time (read: all the time) but don't think I will go as far as saying I have PTSD. However, I do experience several of the symptoms above, specifically, flashbacks, anxiety, and a good bit of anger. I also had a very difficult time bonding with Bailey and I don't think I really felt like she was my daughter until we brought her home. Sometimes I still look at her and have a difficult time reconcilling the fact that she was once in my belly. I think my anxiety problem has actually lessened since she has been home but I still feel on edge with every possible illness. Being in the NICU for 6 1/2 weeks, we had several nurses that we really liked. One of them came to visit Bailey soon after she came home. I had told her in the hospital that I was in constant fear about Bailey passing away. She asked if I still had those feelings. I do. Every day I wake up and my first thought is if today is the day she blocks her trach and I am not quick enough to do what I can to help her. I wonder if I will be quick enough to call 911 if that happens. I wonder what would happen if the EMS got here and she was already gone. I really only have 2 flashbacks - both times are plugged trachs. Seeing my baby turn blue and then go a crazy pale, the moniter alarms, the doctors and nurses surrounding her bed, being as calm as they can, I assume so they didn't scare Blaine and I further. My anger is a little bit more complex and really is large enough for a post of its own.

So maybe I have a little PTSD...I can't imagine how I would be feeling if she had to be in the NICU longer. I have the utmost respect for parents who have to deal with months and months in the hospital. I'm not sure I could have held it together for much longer but I guess you do what you have to do.

Random Musings

2009-08-26T21:32:00.003-05:00

Bailey had her 4 month doctors appointment on Tuesday. She has a yeast infection on her stomach and chest. Meds on board - should be good in a few days. She also got 2 shots - her 2nd hep B and her 2nd meningitis. Her next appointment is at the end of September.

She had a Rainbows appointment last Friday. They are making her a new brace for her right wrist. She has full range of motion but when resting, it turns in and that's not good. They mentioned wanting to hook her up with a Passy Muir valve, which would enable her to vocalize! Dr. didn't think she was big enough but didn't tell us how big she needed to be - it was a confusing conversation.

I have been thinking about family dynamics the last few days. That will be a post of its own - ooo something to look forward too!

Also, still trying to work through some emotional issues that rear their ugly heads every once and a while - another post of its own.

I am going to try to transfer all of the Carepage posts into here. Not sure if it work.

I've been working on a photo project for Bailey's room. I am in the process of painting what seems like 800 frames, and plan on printing pictures of Blaine and I as kids with our families.

One of those topics up there is on tap for tomorrow...

What's going on

2009-08-20T12:56:00.005-05:00

Without repeating everything that has been said here, I will try to summerize what Bailey has been up to since she has been home. I can't believe it has almost been 10 weeks!!

She has head control! Last night she held that big ole head up for almost 10 minutes!
She loves sitting up, with help, and can keep herself up for a few seconds.
She pushes up when she is on her tummy and wiggles all over the place!
She has started sucking her thumb this week! Huge milestone for her because she couldn't get a finger in her mouth when she left the hospital. We have growth!!
She smiles a ton - especially in the car.
She sleeps all night and is awake most of the day. She takes a nap in the early afternoon for about an hour and does the same in the evening. Unless my mom is around. Then she sleeps all day!
I have caught her laughing in her sleep, she has yet to giggle while awake.
She is having her weight checked every week because of her current feeding schedule. She is getting 2oz over 45minutes every 3 hours or when she lets us know she is hungry. Her weight last week was 8lbs 2.5oz and her length was 24 inches! Thats a gain of 3lbs 2oz and 6 inches since birth!
The skin around her g-tube has been very irritated for the last few weeks. We have tried a few things to help it - 2 different barriers, nystantin, and aquaphor. The only thing that seems to help is aquaphor. I think she may be having a reaction to the hydrogen peroxide/water mix we use to clean the tube.
We meet with Rainbows United, an early intervention service, twice a month. They help with general development and education. Preemies generally develop as though they were born on their due date, also called their adjusted age. Bailey is 3 months and 2 weeks, her adjusted age is 2 months and 10 days. We haven't seen her having any developmental delays that are typical with preemies. She is doing everything 3 month old babies should be doing, which we are thrilled about!
She loves her mirror and playing with her tutu that Grandma Sheri got her. Her newest love is ceiling fans. The girl looks for a fan everywhere we go.
We finally finished painting her bedroom! I am still working on the finishing of the room - I want to put up family pictures of Blaine and I with our parents/grandparents/great-grandparents. Just waiting on a few more pictures!

So that's what we have been doing. I am going to try to keep this updated. Hopefully I will be able to let everyone know what its like taking care of a special needs baby, even the dirty emotional stuff!

Bailey's Equipment

2009-07-24T15:52:00.009-05:00

Just like every family who has a special needs baby, Blaine and I spent quite a bit of time in the hospital learning to take care of Bailey. Not only did we have to learn all the equipment she was coming home with, neither of us have had any experience with babies - Blaine was 2 when his sister was born, and I was 8 when my youngest sister was born. She came home with an apnea moniter, suction machine, feeding pump, and a giant air compressor which runs a humidifier. The apnea moniter is only to alert us when she plugs her trach, she has never had any apneic spells - we only use it at night. The day we saw the equipment the first time was seriously overwhelming but not all that complicated.
When Bailey finally came home, we also received her oxygen supply. Bailey is not on oxygen and hasn't been since she was maybe 2 weeks old. When she plugs her trach, it takes her a few minutes to recover (with good reason - not breathing=bad) and that requires a little oxygen. Our equipment and supply company brought a giant 150lb tank, one medium tank, and 6 small tanks. This is what we call "overkill", Bailey's grandkids will still be dealing with these tanks. We have used no oxygen since we have been home and hope it stays that way! The company calls every Friday to find out if we need more tanks or supplies and I ask them to take back at least the giant tank in our living room!

The beginning - Part 2

2009-07-17T15:29:00.005-05:00

Our beautiful baby girl, Bailey Danielle, was born by semi-emergent C-Section on May 6 at 11:00am. She weighed 5lbs .5oz and was 18 inches long. She was rushed into the next room without Blaine & I getting to see more than her foot. They came and got Blaine and explained that she needed a tracheostomy immediately. He says he heard her let out 2 little cries. During the surgery, I ended up having 6 liters of amniotic fluid removed, not including what was on the floor, which I heard the doctors say compared to a waterfall. I was taken to the recovery room at 12:00pm and was there until 2:00pm when I was finally able to see her. She still hadn't woken up yet and the doctors were concerned. It was more than hard seeing her laying there with a tube in her throat, it still makes me cry when I think about it. She started waking up shortly after I was wheeled into my room. I was up and moving around about 12 hours after surgery with only ibuprofin and was able to see her again that night. Bailey was on the ventilator for 2 days and developed jaundice (common for premies). She had an NG Tube put in for feedings. We found out in the days following her birth that not only did our baby have an extremely small lower jaw and ear deformities, but also only 1 kidney, an abnormal amount of ribs, several half-formed extra vertebrae, an extremely high arched palate, worm-like tongue, and her anus is too close to her vagina.

I was discharged on the 9th and leaving the hospital was the hardest thing I have ever had to do. I felt so guilty leaving her. No one should have to leave the hospital without their baby. Bailey kept getting stronger and after 9 long days, we were finally able to hold our baby girl on the 14th. The next week she began to aspirate her feedings and developed aspiration pnuemonia. It took her several days to recover and it was about that time her mucus began to plug her trach. Her heart rate dropped rapidly and she couldn't move any air. The doctors/nurses would have to pull out her trach tube and get a new one inserted and give her oxygen to stabilize her. She started out plugging it every 3-4 days, then every other day, and one time it took her only 14 hours. This is still the biggest threat to Bailey's life.

Over Memorial Day weekend, Bailey had a Gastrostomy Tube placed for feedings. This was the last hurdle to climb before we could bring her home...we thought. We began the rooming-in process in the NICU to learn about the equipment she would be coming home with to make sure we could care for her. Originally, this was supposed to be for 3 nights. Then we had the 14 hour plug and then a 24 hour plug. The doctors decided to fly Bailey to The Children's Hospital in Denver for a consult. We met with ENT, Plastics, and Geneticists. The result? Bailey has the smallest lower jaw they have ever seen and nothing can be done at this point. Her jaw is 1cm square and they need to be able to make a cut and place 2 screws on either side. We were in Denver for 8 days before she was transfered back to our home hospital. Then we began the rooming-in process again. And on Monday, June 22, after 6 long weeks, we finally brought our precious baby home.

The beginning-part 1

2009-07-14T12:07:00.003-05:00

My husband and I met in 2002 and were married in 2006. In between, I was diagnosed with PCOS. At that time, I was told there was zero possibility of getting pregnant without medical intervention. In summer 2008, Blaine and I decided that at the beginning of 2009 we would begin to look into our options. In September, I started feeling pretty lousy and POAS just for the heck of it and was very suprised when those 2 little lines showed up!
Everything went swimmingly until the 19 week scan in January. We found out we were having a little girl and that she had a 2 vessel cord. We started seeing a high risk ob and the suprises just kept coming. They noticed she had a recessed chin and suggested an amnio. Those results came back clean. The next sonogram at 28 weeks, they found an ear deformity. We were put in contact with a genetics team in Kansas City - all they said they could do was to take a look at her after she was born. It was about that time my amniotic fluid started rising and we started having biophysical profiles every week. Each week the fluid level kept rising and I kept getting more and more uncomfortable. At 35 weeks, I decided I was going to beg my doctor to take her out but she had other plans. She failed the BPP and we were sent to the hospital with instructions not to stop anywhere.