Emma is doing well with her eating. She's being given a can of pediasure by tube at night, but is taking alot more orally everyday. She's starting to gain weight again instead of losing and is up to 22 lbs. 1 oz. YAY

Week 1 weigh-in

Unfortunately, Emma's down to 21 lbs. 14 ounces. so she's lost. she's easting pretty well though, we'll go another week and see if she loses less or holds steady.

Long time, no see.

I know it's been forever and a day since I blogged, but really there hasn't been much going on besides this therapy and that. This appointment and that. The kids are doing well. Caden starts OT again when school starts. Lily is just as charming as always and it's been confirmed that she really was meant to be an only child. ;) And Emma got her first haircut which makes her look about 2 years old. Nothing major going on...until NOW!

I enjoyed being a stay at home mom for the better part of the past 5 years but I really felt like something was missing. I missed the adult interaction, I wasn't feeling AS fulfilled and quite frankly I think the kids were getting bored with me as well. I ended up going back to work at our business. My good friend Allie is our live in nanny which works out well. The kids adore her and it's a renewed energy in our home. I feel like our time as a family together is more productive and all around just better. Maybe because we appreciate it more since there is less of it. I'm enjoying working and the company is benefiting and the kids are enjoying their new buddy.

On an even bigger note we've begun the TUBE WEANING process for Emma. It's amazing. I debated whether to post or not on the off chance of jinxing it, but decided that it just may help somebody else out there in our same position. For the past few months Emma has been off all reflux meds and showing very little to no signs of reflux. We've tinkered with food here and there and half heartily began to tube wean before. Our thoughts were if we decreased tube feedings, instinct would kick in and she would eat. Wrong, she just lost weight, got frustrated, and we got frustrated as well. so we held off. We had some more testing done which has ruled out any remaining medical conditions which would prevent her from eating. It appears that her medical issues around eating are gone (at least for now). YAY! So we made an appointment with OT. Unfortunately, Kaiser doesn't really offer as intensive feeding therapy as she needs but her OT is willing to call me daily for reports, give advice etc. by phone. Which is cheaper than the $6,000+ out of pocket elsewhere.

So, Tuesday we had the appt. and we booth agreed that really she has the ability to eat and the will to eat but she's just not hungry enough. The best course of action would be to reduce (drastically) the amount of tube feedings to get her to eat more in the day. Just like last time. Unlike last time, we will allow her to lose some weight and see what she does and hopefully eventually she'll take more and more. this method models closely what an intensive inpatient program would do. The first night we cut her tube feedings in half. She was getting 3 cans of pediasure so we cut it down to 1 1/2. We did that for a few nights, than went own to 1. It's worked so far. She's eating 3 meals a day. Not A LOT, but for her it's a HUGE improvement. Last night she only got 1 can overnight. Today she ate a lot more. for breakfast she had a 1/4 waffle, 3 ounces of pediasure, and a saltine cracker. For lunch she had a box of juice (4 ounces), a half can of gerber graduates macaroni and cheese, for dinner we went out to dinner and she ate about a 1/2 cup of spaghetti, a french fry, and drank 2 1/2 ounces of pediasure. This is HUGE!!! She fell asleep in the car so we decided tonight was the night not to tube feed her overnight and begin our war against the tube.

I thought this day would never come. It's scary and invigorating all at the same time. I'm afraid to get my hopes up and then have to watch her backslide. I'm trying to stay guarded but it's so hard after day in and day out of feeding my baby through a tube and now finally seeing the light at the end of the tunnel. No matter what though, this is a step in the positive direction and we now know that it's truly only a matter of time before she will no longer dependant on her tube. It's not a matter of if, but a matter of when.

I will try and update at least once a week with her weight and her progress. On Monday, 8/13/07 she weighed in at 23 lbs. 7 1/2 oz. I will weigh her on Monday and hopefully she will maintain her weight and possibly gain and not lose! Continued prayers are always appreciated as always!

Caden's Autism Team Evaluation Results

I'll give the nutshell since it was about an hour long. I went to meet with the team for results this afternoon. He is clearly autistic but not classic autistic. His vocabulary is way too high. He is definitely a sensory seeker and show alot of signs for adhd and ODD (oppositional defiance disorder). They're not ready to diagonse yet because of age, but once he starts school if he's exhibiting the same signs and not functioning well in school (at this point he wouldn't be, but i'll touch on that in a few) then will delve into that diagnosis then.

Anyways, Cognitively for speech, meaning understanding speech and able to carry on conversation he's at the 24 month level. This surprised me as I didn't realize he was that far behind, because he has a huge vocabulary but the understanding isn't really rhere. Gross motor skill he's slightly delayed at 36 months or 3 1/2 years. Fine motor skills he's a "solid" 24 months, not less not more. Once again we knew he was behind but putting an age on it really hits harder than I thought it would.

So, the plan of action. Take this report back to the school district and push harder to have him put into a special education class. The doctors have recommended 5 days a week. If they can't provide it push for them to help place him into a preschool specializing in special needs and for them to fund it. We are also at the point of possibly hiring an advocate as it seems this may be a long and dirty battle so to speak without one. At this point it's pretty evident that Caden would not do well i a school enviroment without a 1:1 ratio so ni the next year we'll be working on finding him an aid. Once he's in a public school (not just IEP) than they'll be "forced" to get him the help he needs. In the meantime, we chug along working with him in OT, and working on the school district getting him the resources he needs.

Long Overdue Update

It's been brought to my attention by some EmmaFans that this update is LONG overdue. Partly out of laziness, and partly because not alot has been going on but alot all at the same time. Mostly, same stuff different day. i guess I'll start where the last update ended. We ended up losing our rat Squirt tragically and were all upset. Since then we have lost the other original rat Dora due to a respiratory infection. She went peacefully in my arms. We now currently have Kaiya (means little, she was a runt), Uboo, and "baby". they are so much fun and we never knew just how attached we would get. We even built them a new wooden cage with lots of toys and different levels!

I'll go through each one of us. Sean is doing ok but business is stressful as always. We've looked at houses and have decided with the market the way it is right now we'll be waiting to buy until it bottoms out most likely mid 2008. So, that's excited and a bit stressful. I have been doing alright. I had 2 "paralyzing" type spells and the doctors still don't know what's going on. I have had about a trillion med changes to help me sleep with no change. So, we'll be worrking on getting be healthier.

Caden is doing well. He still has good days and bad but he is so smart and his memory is sharp as a tack. He cracks us up with the things he says and does daily and is a joy to be around. He started a "play group" speech group and goes once a week on Thursdays and seems to really enjoy it. He'll also be starting occupational therapy for some sensory issues on Friday, for 45 minutes a week. His doctor's are less than thrilled with the school district and what they've offere and will be conductiong a 4 hour evaluation on the 30th to send to the district to get the ball rolling on getting him into an actual class. It was interesting to read the school's IEP report and a bit sad as well. On a side note Caden was born with a birthmark on his right shoulder which has gotten bigger/darker/hairier over the years. It's finally time to have it removed as there is a chance it could turn cancerous if left. Unfortunately, he'll have to go under general anesthesia for it, and that will be happening in about a month.

Lily is doing well, blossoming into quite th young lady. She is opinionated as ever and is still quite the Grandpa's girl. She's got him wrapped so tight around her finger it's not even funny. Her vocabulary is growing day by day and she is starting to crack us up with the things she says as well. She is also such the little mommy always wanting to make sure that Emma is okay and giving reassuring kisses when Emma cries.

Brings me to the Bemma. She is doing amazingly well. A month ago we were looking at wheelchairs and getting an idea for what she might need and what would be best for her. Fast forward a month and within the last 2 weeks she has loosened up, she has learn ing how to go from laying to hands and knees to sitting, and within the past few days has even learned to CRAWL. I am just beside myself with joy. Here's a link to her crawling: http://www.onetruemedia.com/shared?p=25d9003b1c2fa4e4dd037b&skin_id=0&&utm_source=otm&utm_medium=text_url
She can now say Dada and Grandpa. Go figure. The verdict's still out on mama though. She's gaining weight steadily and is FINALLY on the charts. She currently weighs 19 1/2 lbs and is about 27 inches. As for her feeding tube, there's still really no end in sight. She still refluxes quite a bit from solid foods. But if that's the worst of her problems, than I'm quite alright with that!

It's that time again for the March of Dimes WalkAmerica. I've created a team Emma Bemma and we'll be walking in April to help raise funds and awareness for the march of dimes. They do alot of work towards finding a cure for prematurity. I've created this video to show a little bit about why we walk.
http://www.onetruemedia.com/shared?p=257685853a0ddd344a596c&skin_id=0&&utm_source=otm&utm_medium=text_url
Feel free to share this link on your blogs, boards or through email. Every little bit counts!

Our home grew by 8 feet tonight!

Sean and I have toyed with the idea of getting some sort of small pet for awhile now (i.e. pat, hamster, rabbit). The kicker was when our accounting manager at work asked Caden if he wanted a rat for his birthday. Then he got excited so there was no turning back. Of course rats are social animals so we had to get two. Anyways his birthday party is tomorrow , but we picked them out tonight. $150 bucks later and we're home with Dora (the bigger one) and Squirt( the smaller one) they are both females. Dora is skiddish and "screams", we're hoping she gets used to us. But squirt is very sweet and loves to be held and carried in pockets. :) She slept on Sean's shoulder for about an hour tonight while he snoozed on the couch. It was really sweet. The kids just LOVE them and Lily shrieks from joy!

Yo-Yo

Well, Emma has gone up and down in weight worse than a yo yo dieter. The good news is the trend overall is upwards. She had a g.i. appt. today to burn off some granulation tissue (type of scar tissue) that formed around her button. She's 27 1/2 inches tall and 16 lbs 7 oz. (this bumps down to 16 lbs. Frequently). She is finally sitting unassisted (if we sit her up and bend her knees. hehe) Nowhere near standing, crawling or walking. She doesn't even roll, she scoots around on her back which has left an almost bald spot. It's kinda cute. Right now she is on 50 cc/hr for 20hr/day. This equals about 660 calories. She needs about 750/day. Her doctor typically switches tubefeeders to pediasure at 1 year and she is only a month away so she'll be switching within the week. The good news is Pediasure is covered by insurance so we'll have a copayment but better than the hundreds of dollars on formula each month! So, she'll start on Pediasure 3/4 strength, 50cc/hr for 20 hours. This equals 750 calories/day.

Some more good news. Emma is FINALLY on the growth chart. WOOHOO. She is 25% in height and 3% in weight (skinny minny), as far as height/weight proportionate she is 10th%. Not too shabby! Her weight goes up and down but the overall curve is upwards so we're thinking positive.

On a semi blah note, Emma is still not tolerating any solid foods. She has shown a lot of interest in eating as does really well, but anything except water makes her reflux flare up bad. We now are not even guesstimating a date to take out her tube. We will focus on just getting her the nutrients she needs to grow and meet milestones. Her prevacid is being upped to 1 solutab, twice daily. We're also throwing carafate back into the mix. Hopefully this will help keep her reflux at bay so we can introduce more solids and eventually wean from the tube. Like I said, we're not really aiming for a date other than "before she starts Kindergarten", according to the doctor. I don't mind the tube at all. It makes it a lot easier to not even think about it or to not dwell on it.

So, overall it was an okay appointment. We go back in 6 weeks again. On a side note, the new pump we got doesn't work right so it has to be sent back and an infinity needs to be ordered. So, we have the pet pump for a few more weeks. It never ends. lol.

Long overdue Update!

Well, once again this is a long overdue update. I wish I could say it's because all was well, but unfortunately that's not the case. This may jump around a bit so bare with me. I will also be copying and pasting some things from emails and posts on message boards for more accurate descriptions. Emma ended up doing well healing from her second operation from her button. It looks great. There is some granulation tissue we are dealing with but overall it's pretty "nice" looking. We're also loving the Mic-Key button. It's much much easier.

On a not so good note about 3 weeks post surgery she had LOST weight. She lost 1/2 lb from the time of her surgery. Not good considering she's on continuous feeds. Here's an excerpt from a post back then.

"Anyways, right now she's gettin 45 cc's (1 1/2 ounces) every hour for 20 hours at 20cal/oz. = 600 calories a day. We're bumping her to 60cc's/hr. = 40 oz./day = 800 calories day. Hopefully she can handle the increase of amount. If not we'll have to up her formula from 20 cal/oz. to 24 cal/oz. which would be a step backwards. Her ped is thinking we're looking more realistically until age 3 or so rather than age 2 to getting her tube out. She says even that given her history is optimistic. She is also getting a referral for OT. YAY. On a good note she can now say Mama, Dada, and Baba and knows what they means. So while she can't really sit and is nowhere near crawling we have one smart cookie!"

So we're a bit over a week from when I wrote that. She's now getting 50 cc's/hr. for 20 hours. We have had to slowly move her up as she was not tolerating the increased dose well at all. We have also laid off the solids since it was causing her reflux to flare up way too bad. With all that said she HAS gained 8 oz. (half pound) in a week. YAY! She got her referral for OT but I still need to make the appt.

Along with the weight gain issues Em is also having some muscle stiffness. Could be caused by poor positioning while in the nicu, or the fact that she was premature. There is conceren though that she has a mild form of cerebral palsy. She is very stiff, had clenched fists more than 50% of the time, has rather spastic movements, delayed motor skills, and g.i. problems, along with failure to thrive issues. All these lead to cerebral palsy. I understand a diagnosis won't change anything but it's alot to take in. I know if she has it that it is a mild form and she will benefit from the OT and PT but it's just one more thing. It's also one of those things that there is no telling why she got it. I know she's definitely high risk for a complicated pregnancy/delivery, along with being a micro preemie. It probably didn't help that she needed to be resucitated on 3 different occasions. ::sigh:: Oh well.

Now, for more good news. We FINALLY got her new pump. We're still waiting for the bags to go with it so we can't use it yet, but getting it is a huge accomplishment. Somebody else who has Kaiser asked me how I got it because they were dealing with some same issues as we were being denied it. For those of you wondering, here's how:

"Let's just say it took a LONG time and quite a few appeals to get one. I had a G.I. willing to work with me. They CAN get one and WILL get one if you bother them enough. Basically have your g.i. write a prescription stating exactly WHY you need a non-drip chamber pump. Errors, mobile child, etc. When I say exact, I mean EXACT. Then it goes to the DME. Then you need to call the DME over and over and over to make sure they send it to apria. Then apria will tell them they don't cover them, don't have them, and can't get them. The DME will NOT call you back. You wait a few days/weeks and then call the DME back. Then call Apria back, then DME again. They tell you no. You go through this process about 6 times. FINALLY, you get ahold of someone WAY high up at Apria who approves the "upgrade" and waives the upgrade fee. The GOOD new for you (and I should post this somewhere here and meant to) Apparently, I got through to the guy high up. Well, my G.I. did and they have now contracted with Zevex as of the beginning of January. Over the next month or so they will be phasing out the Kangaroo pumps and bringing in Enteralites. They will eventually get the infinities and phase out the regular enteralites as they get more infinities. Like I said this was a LONG process! You can fight like I did, or you can wait a month or so until the new pumps start arriving. I would call you contact at Apria and ask though. I know our area is starting to get them the end of this month. I got mine today, but it was special ordered! If you need help or specific questions I'll be able to answer them if possible."

So, that's about it for Emma. Lily is doing well. She's our little firecracker though! Caden is a handful as always but so much fun as well. We have another IEP meeting for him. We're also going to be starting OT and a social skills class for him as well. We're working on getting him into headstart from 12:30-4:00 p.m. mon-friday as well. Both for his sake and mine. He thrives on structure and interaction with other kids. We just have to find the right enviroment for HIM. Hopefully, things will start falling into place for him though. My health issues are getting better. I had a few medication modifications and my symptoms are quite a bit better. Still having some trouble but nowhere near how it was. I am able to function which is something I won't take for granted anymore.

One last update. The kids birthdays are all quickly approaching. Caden's 4th birthday is the 31st, then Emma's 1st follows 2 weeks later on Feb. 5th, and last but not least Lily will be turning 2, two weeks later on March 5th. We'll be busy for awhile. The next updates will most likely be birthday updates.

Em has a Mic-Key

Everything went well! Yay.

Last night we got a call saying to check in at 1:00 p.m. and surgery would be at 3:00 p.m. We made Emma NPO after 9 a.m. We checked in got back onto the peds floor with some nurses who knew us (there first comment was "she's back AGAIN?"). Thiis time we were in a room with a roomate. Another baby younger than Emma it looked like. I don't think the parents spoke much English so we didn't really talk. Just the obligatory nod and smile of understanding.
Emma definitely is aware of what is going on now. She knows the hospital and she knows the rooms. It's really sad actually. She wouldn't let us put her down and cried/screamed/whimpered everytime I went back in her room. We spent most of her pre-op time walking the halls of the peds unit. A volunteer gave her a book donated by a family who had lost a child. She really enjoyed the book. she also got an octopus stuffed toy that squeaks and rattles. It had a sticker that said "I squeak and rattle" so we put it on Em's forehead. It was pretty funny (and accurate at the time). She got her I.V. which of course was a nightmare. I was hoping they would wait until she was sedated but orders were written for pre-op and turns out the OR was running late anyways so it was probably a good thing. She finally did fall asleep RIGHT before we headed down to pre-op.
They took us down around 3:30 p.m. A half hour past when her surgery was scheduled. We waited around down there talking to nurses and the anethesiologists (same as last time). She finally went in for surgery around 4:45 p.m. She liked the anesthesiologist and didn't cry when they walked her back. We headed to the waiting room and figured on about an hour. Sure enough an hour later at 5:45 p.m. Dr. Duh came and got me and brought her Mic-Key box out. Explained some things and then brought me back to her. Emma did really well during surgery and being extubated. She did require oxygen for some time as she was in the low 90's for awhile oxygen saturation wise. After about half hour Sean got to come back too. By then she was stable and only moaning a bit. She had a good bit of tylenol in her but she is always weird when coming out of surgery. Somewhat moaning/crying/fighting. After an hour we went back upstairs.
Her button looks GREAT. Some redness but that's normal. SO much better than the long peg tube hanging down. Also they burned some granulation tissue with silver nitrate while in there too. She was going to be started on pedialyte. 30 cc's/hour for one hour and then onto formula 30 cc's/hour until morning. Sean and I had already decided I wouldn't stay tonight. We had a rough night last night. She was refluxing bad which she hasn't done in awhile. We think she aspirated (her lungs were gunky sounding today before surgery). I was up with her most the night and "slept" on our couch with her on my chest and every now and then her shrieking/crying from pain and arching her back. Poor baby. I need my sleep badly so I came home. Also I KNOW I couldn't sleep with a roomate. I HATE leaving her there but really I need my sleep today. I'm like a walking zombie. She was crying a bit when we left but her nurse was with her so we felt okay. I'll pick her up before 10 tomorrow. Hopefully she can get some rest and some good meds while she is still there. Here are some pictures from today.

Waiting to go down to Pre-Op.

"I speak and rattle!"

Em's new button.

Hospital: Take 6

Well I’ll touch on me first. I saw the cardiologist. We went over a bunch of what if’s but not probabilities. He set me up for a 24 Holter test with a small battery pack to wear around my waist and 5 electrodes for 24 hours. If I have an episode I’m to press a button and record in a diary the time what I was doing and symptom. The monitor records constantly but this helps them to identify if the symptoms are related to the heart. Probably not but we’ll try it. Surprisingly yesterday was a really good day and so far so good. I have one very small short dizzy spell last night while cooking. Go figure! We may be doing the tilt table test next to see if the results vary. Otherwise I wait to hear from neurology to reschedule. My surgery was scheduled for today. It’s somewhat sad but somewhat a relief. I’m glad I’m not having major surgery but like I’ve said before it’s at the price of not knowing what’s going on with me and having no real explanation!

Onto Emma. We’ve been having problems with her Y-port attachment at the end of her peg tube. This is the piece that has a “female” end which the “male” end or “Christmas tree” part of the tube on the feeding bag plugs into. It is stretched out and the male end keeps sliding out and leaking. We’ve been taping it which has gotten old quick. We spoke with Em’s main G.I. who said call Dr. Duh and see about getting a button now since we’re having problems. So I did. He likes to wait about 12 weeks before switching to get a good tract formed but we discussed doing it earlier.

Anyways he had a no show for a surgery pre-op yesterday so she is booked for tomorrow for the OR to have her peg tube switched out for a button. YAY. We have to be at Bellflower at 10 a.m. in the peds unit. UGGH. Hopefully it’s a day surgery barring no complications. She has to be NPO after 8 which are fine since that’s when we unplug her for her 4 hours anyways. She’ll go under general once again. Prayers, that all goes well and that it is uneventful day. We are so thrilled to be having this done right now. The peg tube has been okay but it is somewhat of a pain and it will be nice to have a low profile button instead of a tube especially while she’s not hooked up!

This is what she has NOW

This what she will be getting TOMORROW

No news is good news I guess.

We're just plkaying the waiting game. I have had a few "good days" the past few days. Meaning not too manbyd izzy spells and no real BAD headaches. And no falling. But I woke with a major headache today so we shall see. I saw my general practitioner today. She is stumped as well. she did a baseline EKG which appeared to be just fine. She also put in the referral to the cardiologist and I need to call later today and get an appointment. So now we want to see the nuerologist and the cardiologist. She mentioned a "tilt table test" . I guess it's just that they strap you to a table and keep turning and tilting it to try and get you to a) pass out b) have a seizure or c) do nothing. Sounds like a hoot. ::sigh:: She's not sure if that's what they'll do but says it seems like the next logical step. So, still waiting. Everyone is too afraid to prescribe anything for the headache or dizziness or even my sleep issues. Nobody knows what's wrong so they don't want to make anything worse. While I agree with them there are times where I am so miserable that I'm willing to take about any risks/side effects, but maybe that's the symptoms speaking. So, that's it for now. I'll update later about the kids with pics since I have managed to steal Emma's blog.

I've been Tagged!

My Friend Susan tagged me so here it goes.

1. Egg Nog or Hot Chocolate?

Both, but I can only drink a little egg nog at a time. Must be store bought, no home-made. I love hot chocolate but it has to have TONS of ooey gooey marshmallows on top!

2. Does Santa wrap presents or just set them under the tree?

This one is hard. Growing up my mom put most of our gifts from "Santa" and left our stockings filled on the couch. I don't ever really remember "believing" in Santa but perhaps I did. When I had my first child I decided that I would not really do the whole Santa thing. We would enjoy the fun of Santa and the reindeer and the Christmas songs but we would celebrate the birth Of Jesus Christ and all that comes with that.
Then I met my husband and we shared our first Christmas together. By this time I was pregnant with my second child, our first. He was adament about there being a Santa Claus an didn't want our kids to miss out on it. Throw in that Grandpa Nick, my father in law is an avid Santa fan and I was outnumbered. We agreed that there could be Santa. I would not tell our kids that there is no Santa but I would not encourage it either. I will teach them about Jesus' birthday and we will celebrate that as well.
Mommy and Daddy bought the kids about 2 gifts each, and the grandparents are ddoing the same. My father in law went CRAZY in KB Toys and "Santa" will be bringing the kids alot of toys Christmas morning. We're undecided how to handle it in the future. I don't really want to be "out done" by Santa every year, and would rather keep Christmas more about family and a few gifts here and there. In other words I don't want my living room looking like Santa's workshop exploded in it!

3. Colored lights on tree/house or white?

White. I think they're so elegant and they don't clash with the ornaments. On the outside I'm really good with either but more inclined to do a variety of colored lights.


4. Do you hang mistletoe?

No, but I really should!

5. When do you put your decorations up?

The weekend following Thanksgiving weekend.

6. What is your favorite holiday dish (excluding dessert)?

Mashed potatos and gravy. Mmm.


7. Favorite Holiday memory as a child.

I don't recall a whole lot, which is strange. But I do remember wanting a doll stroller REALLY badly. I saw it in my mom's closet and she convinced me it was for my cousin. I was heartbroken. She wrapped it up in a huge freezer box with TONS of newspaper and I was SO thrilled and surprised to get it Christmas morning!


8. When and how did you learn the truth about Santa?

I don't ever really remember believing. I do remember watching my mom stuff our stockings and put them on the cuch.

9. Do you open a gift on Christmas Eve?

Yes, we go to my husband's families house and have their big to do. We don't open family gifts until Christmas morning except the kids get christmas Jammies.

10. How do you decorate your Christmas Tree?

We have a fke tree this year. Wahh. But we love noble firs. WIt is pre-lit with white lights, star on the top, plastic bulbs this yea and each year we all get one new ornament which represents something we enjoyed or were into that year. Those are the hallmark ornaments usually.

11. Snow! Love it or Dread it?

Love it! Wouldn't want to live in it ALL the time though.

12. Can you ice skate?

Yes, it's fun too!

13. Do you remember your favorite gift?

As a kid probably an easy bake oven. I LOVED that thing, along with my, My sister doll. Until Chucky themovie came out!

14. What's the most important thing about the Holidays for you?

Reminiscing with family and celebrating the blessings from the year before. Or in this years case, celebrating that we made it through the year. :)

15. What is your favorite Holiday Dessert?

Umm, don't really have one. Used to be my grandma's Pecan pie.

16. What is your favorite holiday tradition?

We're just starting out our family traditions so to speak, but I'd like to start a tradition of the kids getting new coordinating Jammies or Jammies of their favorite character each Christmas Eve. My husband getting a new pair of funny/christmas boxers in his every year. And watching the polar express the night before Christmas Eve with the kids all snuggled together.

17. What tops your tree?

An ugly, cracked in the back lighted star that isn't lit this year. I'm having a hard time finding a new one that I like!

18. Which do you prefer giving or receiving?

Both, I love watching the joy people get from receiving gifts. I also enjoy hand picking something special for them. But I'd be lying if I said I didn't like tearing open into wrapping paper either!

19. What is your favorite Christmas Song?

Breath of Heaven by Amy Grant. I was in a Christmas play with this song when I was about 8 and have been in love with it ever since.

20. Candy Canes! Yuck or Yum?

I like them, not love them.

Tag you're it! (Copy, paste and share on your blog) Leave me a comment with a link to your blog so I can check out your answers too!

Double Edged Sword

Well, well, well. After several messages to the Head and Neck Surgeon I got a call back. My CT scan was indeed clear. There was slight bit of mucous in the frontal sinuses but it was considered a normal amount. The Dr. was quite baffled. He said to me he had to keep going back and forth between the scans and even double checked to make sure the CT scan was mine. He said he has never seen this before. He said it appeared calcified at the bottom and that it was completely "plugged" upon his physical examination. Remember back to the uncomfortable probe up the nose and down the throat? Yep, that is the one. He said he has been trying to wrap his mind around it all day before calling me back and letting me know that the surgery has been cancelled. I burst in to tears. Some shed of relief that I won't have to undergo a risky surgery, others from frustration, pain, and fear. The fear of the unknown. He is having me come in to have my hearing tested and to check my ears again but doubts that he will find anything. He apologized. What for? It's not his fault. He said he wishes me well and will be discharging me from his care once I have the hearing test and the ear exam.

He did say that my symptoms baffle him with everything showing up "clear". He feels it is a neurology issue or possibly a cardiac issue regarding circulation. My referral is in for neurology. I should get an appointment date on Monday. I'll be making an appointment with my general practitioner to get a referral for the cardiologist. In the meantime, I wait sicker than I was before I ever met him and left right where I started from.

The many prayers have been appreciated and continued prayers will be welcomed.

Tired of this roller coaster

I am tired of this roller coaster. I just want off of it. It's 3:46 a.m. and I woke from a haunting dream around 2:30 a.m. I tried to go back to sleep but drifted back into sleep in the same place I left off each and every time so I quit trying. So here I sit. Sean is snoring peacefully beside me. In the background there is the click of Emma's swing (where she sleeps peacefully through the night now, yay!) and the whoosh of her pump. The soft buzzing of the DVR is providing some much needed white noise. It should be peaceful but it's not. My head is pounding, my body aches, and speckled blackness like a TV show with bad reception succumbs me every now and then. I feel like my body is failing me.

Over the past two weeks my symptoms have significantly worsened. My equilibrium is completely off. I have fallen more times than I can count on both hands. I no longer shower standing up (Thank God for the removable shower head). I often find myself dizzy and catching myself. I no longer bend over for a fear that I will topple over. I don't drive at night because my vision has become more blurry and I'm pretty sure I won't be driving for quite some time. In fact, Sean is taking my van to work tomorrow. I get nauseous at any slight movement. And, finally, I find myself on the couch in a fetal position hiding the pain and tears more often than not.

Yesterday was to put it mildly horrible. I went into the office to help. Although, I wasn't much help. We went to grab a bite to eat. We stopped a few times walking in for me to "catch a few breaths" and wait for the wave of nausea to pass. The second we walked in I had to run to the restroom to "relieve" myself. I then ate most of my meal and continued to feel dizzy, nauseous. I guess I should have prefaced all of this with the fact that I am NOT pregnant, can NOT be pregnant, and probably will NOT be pregnant anytime soon or ever again. That's another entry in and of itself that I'll share when the time comes, if ever. Back to yesterday. We went back to Sean's office where I spent the next half hour on the nurse advice hotline since my general practitioner was out for the day. Like always they gave me the standard head to the E.R. after playing 20 questions with me. Sean's grandma was with the girls and Caden was at school still. Sean dropped me off at the E.R. and headed to pick up Caden and relieve Grandma.

I checked into the E.R. and of course it had to be one of the busiest nights they've had all month. Go figure. They had me up and down about four times just to take information, get vitals, and put a wristband on me. Oh yeah, to make me sign my life away and say I'll pay the bill. What's another bill at this point, right? So, I'm surrounded by a kid with a cut on his finger (looked like a paper cut), a woman in front of me who is obviously developmentally disabled (which of course, I have nothing against but please don't talk to me when I feel like puking all over you and I feel like I'm in the twilight zone.) a few people with what seemed to be the flu and Ms. Proper and her entourage (5 kids I assume) who come RUSHING in from the medical offices because she has an obstructed bowel. At which point the nurse explained that she had to wait like everyone else and that this is the emergency room. First come first service and emergencies take precedence. I thought I would faint right then and there and that they'd have to call security on who I assumed to be her son. I felt like yelling, "Somebody, call a doc Ms. Proper can't take a dump and while you're at it give her some hot tea and a warm water bottle to put on her tummy to shut her up while we all play the hurry up and wait game." I restrained myself, and instead remained slumped over in my chair next to the DD woman who wanted to tell me about her tennis shoe slippers that she got at Kmart for $10.

I tried to call Sean to see if he can come wait with me only to find out my phone is completely dead. In the 3 years I've had it I have never let it go completely dead. Cool, no way to call him. No way for him to call me. After, oh, I don't know how long since I can't tell the time I get called back. They have me stand behind a line and are doing an eye test on me. I tell them I'm dizzy and I really can't stand up. So, of course they say, "try". I tried, apparently "failed" part of their exam, have to grasp the wall, lean again it to prevent myself from falling. I start to cry since my body is going numb and I feel like I'm about to pass out. The nurse stands there and looks at me like I'm just taking a break for the hell of it. The Dr. who was sitting behind me rolls over on his chair and asks if I'm ok. I know if I speak I fall. He says, "nurse, can you get her a chair?” Then he realizes he should just stand up and give it to me. Sure enough, I started hyperventilating, sometime after the fact that I felt like I would pass out and nobody was helping me to move or sit and I got scared. Go figure.

I go to the room. Wait awhile on the gurney using the gown as a pillow. The doctor comes in and I immediately recognize him as the less than pleasant individual who "treated" me when I had complications during Lily's pregnancy. Not to worry he came in said so you're dizzy? I said yes and he said be right back. Nurse walks in and I ask the nurse for a new doctor. She says the ER is full and I'll have to go back into the waiting room to be reassigned. I say "No, thanks." and decide to deal with the doctor I will kindly rename Mr. Whack. So, Mr. Whack comes back in, asks a series of questions. Asked me if the room is spinning about 8-10 times. Each time I tell him no. He says, "Are you sure?" Nope, I'm not sure, you got me. I forgot it was spinning. "No doc, still not spinning." "What meds are you taking?" "I'm taking x,y,z, oh and I forgot the rest of the pharmacy as well." He says, let me go look at your records. Twenty minutes or so later he comes back in. "Well, I see you had a CT scan done and you have surgery scheduled." Yep, I told him that about an hour ago too! He says, "And the room isn't spinning? Can you see how many fingers I'm holding up"? At this point I was annoyed, especially with him and decided I might as well have some fun. He holds up two fingers. My vision is blurry but I can still make it out. "You're holding up two, it's kind of blurry but it looks like you might be growing one on the posterior side of your hand." He looked down at his hand puzzled and walks out of the room. I chuckle to myself. He comes back in, ordered another CT scan for me to make sure nothing else is happening up there. I ask to call Sean.
Called Sean, Grandma hasn't left the house, He's putting the girl's down to come be with me. CT scan guy comes and puts me in a wheelchair, he's pretty nice, and we’ve met before. The machine was decorated in garland to make it a bit more festive. We do the scan, I look at it, everything looks about the same, but hey what do I know. The guys looks at it and tells me my sinuses look like they still have some shadowing in them (read=sinus crap). I go back to my room and Sean joined me about 20 minutes later. Mr. Whack walks back in and looks surprised to see Sean there. He stands in the doorway and commences to tell me that my CT Scan was normal, that my sinuses are completely clear and to call my doctor and cancel my surgery and that it's probably just been a bad virus all along which is in my middle ear causing my problems. So, Sean asks, "Could they be lasting over a month?" Mr. Whack says "Well, um, I think so." Yep, real reassuring there doc. He "prescribes" something comparable to Dramamine, over the counter. Tell me to follow up with my head and neck surgeon and puts in another referral for a neurologist for my "issues".

$100 later we leave with really no more information than going in. I still have all the above listed symptoms; we're more confused on my "sinus issues". Obviously, thrilled if I no longer need surgery, however, now perplexed as to what the heck is really going on with me. Sean walks with his arm around me to the car so I don't fall. We drive with my head out the window like a doggy to avoid me puking in the car. Go through a drive through. Make it home and I immediately start freaking to get out of the van as not to christen it with any bodily fluids. I then flush out my system a bit into a paper bag I'm holding, walk 50 more feet and fertilize the bark covering in the planter a bit. Feel a bit better, head home, eat dinner and crash in bed to have haunting dreams.

I will spend the bulk of the day today I'm sure on the phones calling my doctors, having my CT Scan read by somebody who I feel is a bit more qualified, praying for no surgery, hoping for answers, and resting in bed since Sean's Grandma is coming up and I'm not allowed out of bed today. If you've made it this far I both congratulate you and apologize to you.

Goodnight and Good morning.

Spoke too soon..

Well I spoke too soon about the pump. Night before last it errored about every half hour to hour which woke up em and me and all that nit so fun stuff. It was also pumping more than it should faster than it should. The home health care lady put in a call for a replacement to Apria and they were supposed to call me. NOBODY called, surprise surprise. Unfortunately, I woke up to our refrigerator bein dead and warm yesterday so I had to deal with trying to find a new that we could get by today and couldn't deal with apria. So anyways, We set up her pump last night and it kept having an occluded error, we checked everything, NOTHING was occluded, we even tried changing the bags and no deal. Then it would switch the other error. So annoying. so we laid off the pump and called apria after hours. The drrive had a few more calls then had to go back to the warehouse to get a new pump. He didn't get here until about midnight. so she started her feed a few hours late. This pump is the Kangaroo pet pump, I guess the one before was a slightly larger version. He said this one is for babies. It's actually pretty small and cute but still not the one we want/need so we'll be working on it. Here's for the good news. We got it all set up and after toying with it and a million errors got it working. It ran all night with NO erros, and it delivered the right amount of formula in the right amount of timie.YIPPEEE. We set Emma and the pump up for the swing hoping it would help her sleep and she slept ALL night. Double Yippee. I unfortunately didn't get to sleep until 2 a.m. and woke up at 7:00 a.m. Still better than before.
Unfortunately, Emma's reflux isn't any better. She doesn't seem to be puking/spitting up as much but more silent refluxing. We can hear it come up and then hear her choke/swallow it down whilst having this nasty look on her face. She was also in quite a bit of pain/discomfort yesterday. Poor baby. Last night I secured her tube in a million places so it wouldn't pull. It looks red/raw last night and I don't want it getting infected so hopefully that will help. She seems to throw up more after bottles. We don't really see her refluxing with the tube feeds. If I thought it was best we would go all tube feeding but I'd really hate her to lose the oral abilities she has. So we'll keep bottle feeding and I guess just dealing with the pain of reflux :(
On a side note, there is a piece at the end of the peg tube which is an attachment to hook the feeding set( tubing, bag etc.) to. There is a little plug which plugs it when not in use. It broke off yesterday so we were using it just not connected to the attachment. this just meant we had to be super careful not to lose it when it wasn't in. Yep, you guessed it. I went to flush her peg out after her feeding last night and couldn't find the darn plug. So I frantically looked with syringe still attached to the tube. No go. So I taped it all up with gauze and called the home health nurse. She was on her way down south and couldn't help but had me call the nicu. Anyways, they had the piece I needed. Hopefully it will fitl. It looks bigger but we'll give it a go! Oh, we did get to see one of our favorite nurses though. :)

More Pictures from today.

We're Home!

We're home and settled. After making about 20 calls to Apria we finally got the Kangaroo Pet Pump delivered. I'll probably have to call on monday about 20 more times to have them exchange it for the more portable, smaller Zevex enteralite infinity pump. In the meantime her pump is easy to use and will get the job done temporarily. I cleaned her g-tube site tonight and it looks GREAT. It had very little discharge. I placed a new piece of gauze (probably won't after tonight) and got her all set up for her feed. She'll have 30 cc's (1 oz.) an hour for 12 hours overnight. So far so good with NO reflux or spitting up since her surgery. We are SHOCKED and really hoping that this helps her reflux as well. Even more shocking she took 6 1/2 ounces from a bottle from the nurse today. NEVER EVER EVER has she taken more than 4 ounces at a time. Even better NONE of it came up. We are thrilled and really know now this was the right thing to do. Her g.i. doesn't want us overloading her stomach though so we're not to allow her more than 4- 4 1/2 ounces more awhile to give her stomach time to get used to the g-tube and to heal and to stretch a bit more. If she starts refluxing more than we're to offer more by g-tube slowly until she doesn't reflux as much. Anyways, she is so used to having a bottle every half hour at night for comfort and soothing that she is really upset about not having it. I'm sure at this point alot is behavioral as well and it will just take a bit of "training" to get her to go longer at night without waking and to fall asleep without a bottle. In the meantime I feel like a mean mommy. :( Here are some pictures from right before she was discharged and some tonight during her dressing change.

The night went well

Just got home again. emma should be discharged later today hopefully. I'm still dealing with the home health company to get her supplies. Hopefully we'll have them BEFORE she is discharged. She did well overnight. They started her on 15 cc's pedialyte/hour for 3 hours. Then 30 cc's/hour for 3 hours. Than half strength formula 30 cc's/hour for 3 hours. Then full strength 30 cc's/hour for 3 hours. that ends her first overnight continuous feed. She should be back to oral feeds for the day. The doctor did mention we could bolus feed or use the pump to feed as needed throughout the day as well but to try to keep her nippling and taking oral feeds at least 3 times a day. She slept for 2-3 hours at a time last night which is a RECORD for her. I'm hoping we're onto something here and it's not just the morphine. Oh, and even better, no reflux yet with the tube feedings! Hoping that's not just a fluke either. I'm really starting to think we did make the right choice. Hope it continues to go well. Sean and i are doing well. We're tired, emotionally, physically, mentally, but hanging in there. Caden and Lily appear to be doing well and I[''ve showed Caden pictures of Emma's new feeding tube and he understands that is is to help get milk in her tummy and doesn't seem to bothered. He asked if it hurt her and I was honest. I told him that it hurt at first but she got medicine and is now feeling better. He also saw pictures of her smiling and playing with her giraffe toy with the tube in so he seems to be ok. I wanted him to know before he came home since he doesn't do well with things being sprung on him. I'm sure Lily will be just fine as well.

She was so happy when she woke up and saw me this morning :)


Here she is resting peacefully right before I left this morning:

Phew! She has a G-Tube.

Just updating somewhat quickly before I head back to the hospital for the rest of the night. We arrived at the hospital around 9. she was a direct admit into the peds unit, 8west. We settled in quickly and played the hurry up and wait game for the next few hours. They took her vital signs, got her prior medical history and anesthesia history from us and weighed her. She weighed in at 13 lbs. 10 oz. So, she has gained 2 oz. in about 2 1/2 weeks. (Keep in mind she is on 24 calorie formula). Anyways, she had a OR slot for 12:30p.m.

We were taken down to pre-op around 11:30. She hadn't had an I.V. started or anything so we just played the waiting game there as well. We met both anesthesiologists (one really fell in love with Emma) and they explained what they were going to do. They decided with her prior history of having problems being extubated and coming out of anesthesia that they were going to do a modified "conscious sedation". She was put out with gas, but was not administered any narcotics. The procedure was done with a local anesthetic. She was only given a tylenol suppository after the surgery for pain. She was ordered morphine but as far as I know has not been given any. That will change when I get back to the hospital!The procedure itself only took about 20 minutes or so but the lady who fell in love with Emma decided to "drag out" her time in the OR to make sure they wouldn't have any problems. she wanted her FULLY awake before heading to post-op recovery. She did fine with extubation. She had a few "blue spells" where she needed stimulation and they kept her on oxygen until she went into the recovery room about 30 minutes later. Her anethesiologist followed her there and stayed with us another half hour. When she got into post-op they called one of us back so I went while Sean stayed in the waiting room. Emma was quite upset (and hungry) so I rocked her and we made a make-shift pacifier out of a bottle nipple stuffed with gauze and taped. She doesn't take pacifiers but this dipped in glucose water seemed to do the trick. We kept her on "blow-by' oxygen for another 30 minutes. I asked them to bring back sean after about 15 minutes. I was supposed to leave, but I layed low and nobody said anything. After about an hour and a half we got to go back up to her room. We got her all settled in and talked to her doctor a bit about after care. I've done so much research that most of it was just review. We got her content in bed and then Sean and I left so we could go see the kids and grab dinner (Caden was at preschool and Grandpa picked him up and Lily was with Grandpa since last night).
Sean and I had a nice dinner at Woodranch (a good steakhouse) and then met up with Grandpa and the kids. We came home shortly after to put the kids in bed. I have a few things to get together and then I'll be heading back to the hospital. Emma currently has 2 lvns and an RN asssigned to her since she tends to be "high maintenance" while in the hospital so I'll be heading back to relieve them and spend some time with my baby.
On a side note we're having trouble with the Home health care people and coordinating getting a pump. They tried to deliver the WRONG pump last night while we were gone. I called them and they were supposed to call back and never did. Then we spoke with our case manager today who said she ordered the Zevex pump NOT the Kangaroo and said she'd call somebody and to call them tomorrow for it. When we got home Apria had delivered 25 pump bags for the kangaroo pump and left them on our doorstep. UGGH. I hate dealing with Apria. This is the same company who took 5 months to pick up a breastpump and couldn't seem to show up after schedule MORE than 6 pick-up dates. This should be interesting. Her G-tube looks great along with the site.
Here's a link to some pictures from today. Hopefully, it works!
http://smg.photobucket.com/albums/v225/munkeesmama/G-Tube%20Surgery/?action=view¤t=G-tubeSurgery009.jpg&slideshow=true&interval=3

It's actually happening!

The home health people just called. They'll be delivering Emma's Feeding pump tonight (kangaroo pet pump), bags, and supplies. I guess we'll have to get a prescription and jump through hoops to get the zevex enteralite (more portable, smaller pump). YIKES. It's actually happening. I'm choking back tears as I write this. I KNOW this is the right thing for her (getting the g-tube) and up until now I've been okay with it, but I guess I'm getting those last minute jitters, 3 people from the hospital have called and the home health people have called twice. I don't think I've been this nervous for her since she was born!