Friday, June 27, 2008

The look.....

Yeah, yeah, pics to come, I promise.

I had to get another KUB of Emma's belly today to make sure she was CLEAN (yesterday was a not-so-fun poop day and today's enema produced bright green results-ick) but she is clean so I know now that we have a clean system to work with using our new bag/foley cath enemas. Yay! Thanks to Bridgette for helping me out so much, over LIVE voice-to -voice Internet chatting from AUSTRALIA! How cool is that? I love talking to her and listening to her speak with her Aussie accent LOL

But the topic of this post, the look, well I saw it today in the radiology waiting room. My friend Denise and her daughter Jayden (Emma's age) and her newborn son (born 6/5) were in there. I admit I haven't called her since her baby was born (did send her a text) but things with Emma have been out of control and I knew if she needed something, she would call. She was nursing and when she lifted up her head when I called her name, my heart broke into a thousand pieces. She had the look of "something is wrong with my baby" all over her face and I knew, I just knew something was wrong. And she started crying and I was crying and Emma and Jayden were digging through my purse looking for snacks....oblivious to what was going on. Their focus were on the teddy grahams in the bottom of the purse.

Her son wasn't gaining a whole lot of weight and he was there for the THIRD NEWBORN SCREENING b/c the first one came back with a high chloride reading and they went to repeat it and it got contaminated so she was back, again, trying to get this test done. A dumb*ss nurse told her last week that a high chloride level and him not gaining weight was a sure sign of CF. WTH??!!! You don't tell a new mom this as she is walking out the door! A doctor tells you this folks! Oh, and they wanted to test him for anemia b/c he was so pale and high chloride levels also go hand in hand with anemia(mom and dad are so very tanned). And like all of us do, she got on the Internet and started researching, starting freaking out and started to wonder if her baby boy would ever crawl, walk, talk, go to school.....

In-between sobs she said that she could handle the anemia, but not the CF. She was frustrated that the test would take 2 weeks to come back but scared about finding out the results. All I could do is listen, feed her daughter snacks and offer my love, my prayers and my help if she needed it. I didn't know what to say but I knew I didn't need to say anything at all.

She asked me how I handled everything with Emma (she met me about a week after Emma got out of the NICU) and wondered if I hated God for giving me Emma with all of her "ticks". And I was honest with her....I told her I did hate God at first. Why me? Why us? We did everything right but still......why did you bestow upon us a baby with no butt hole (Becca F will find humor in this). And I told her how sick I was about "God doesn't give you more than you can handle blah blah blah"). And from people telling me this with "normal" babies....I about ate them alive. It's like we were being punished or this was some trial we had to go through for God. But then I read a different story about the Saints in heaven deciding who Emma would go to.....and he chose us because WE COULD CARE FOR HER. He knew that we had patience when other people would not have, He knew we had the open-mindedness to try other things that others would not have thought of, He knew we would travel halfway across the United States for a wonderful surgeon to finally fix our daughter where other parents might not have had the money,the time or the insurance to get her there and finally God knew that we would love her, do whatever it took, no matter the costs, to make Emma ours. When I look at it this way, Emma is indeed, hand-picked by God to be given to us and no one else because we could care for her in the way she needed to be cared for. Maybe Denise listened, maybe not but I wanted her to know that whatever happens, your faith and love always pulls you through, somehow, all the time. God gives us our children for a reason, a reason we may not be able to understand at first.

If Emma didn't have the "whole no butt no poop thing going on", I would have never crossed paths with my wonderful girlfriends and their "no butt-hole" kids as well and quite frankly, my life would be dull without them and their constant support. I love them all to pieces and wish we lived on the same street to go get some margaritas on those hard days.

Realistically, everything is probably fine and it's probably just anemia. But until she knows for sure, time is at a standstill. Please pray and keep her in your thoughts

Tuesday, June 24, 2008

Happy Birthday Emma Rose!!!!

Happy birthday my sweet baby girl!!! We had ANOTHER party for Emma on Sunday with Aidan and cream and cupcakes! I have more pics to post but today we have 2 doctor appts and we have no food so today will be a busy day :)
Hope you enjoy being 2 Em! Love, Mommy

Saturday, June 21, 2008

Just a sneak peek

It was a beautiful party.....I am beat so here is a pic until I can post tomorrow :) I just totally loved her party girl dress!

Friday, June 20, 2008

Two years ago tonight.....

About this exact time two years ago, my water broke and I went into labor. I remember laying in bed and then getting all ticked off thinking I was peeing myself again until I got to the bathroom and everything came pouring out. I was a little surprised b/c I still had 5 weeks to go, but hey, she was ready and I couldn't wait to be a mommy. I remember how the mood all changed when I got my midwife on the phone and told her the good news and then I added..."it feels like water is gushing out of me". She calmly asked if it got worse when I stood up and of course, it did. Dead silence on the other line. All she said was to leave NOW, don't even pack a bag unless it is ready. No time to get a snack or feed the cat, just get in the car and drive.

Lucky for us, it was 10pm, no body on the road. I remember listening my Third Day CD, listening to my favorite song on that CD (My Offering) and being perfectly calm. I knew I and Emma were in God's hands then and I had nothing to fear. I started to "hypnobirth" myself into another state of being and simply focus on my daughter being born.

Tomorrow (2:55am), she will have been on this earth for 2 years. Tomorrow is her 2nd Birthday party. Tomorrow we celebrate another year that we got to spend with her and watched in amazement of how far she has truly come...,

Wednesday, June 18, 2008

I've been tagged!

Ok, Toni tagged me LOL so I hope I am doing this right.....

Here's how it works: Use the first letter of your first name to answer each of the following. They have to be real places, names, things - nothing made up. You can not use your own name for the boy/girl names.

1. What is your name? Laura

2. A 4 letter word: Leaf

3. A vehicle: Laredo

4. A city: Lewis Center, OH

5. A boy's name: Lance

6. A girl's name: Leah

7. Dessert: Lemon Cheesecake

8. An occupation: Lawyer

9. Something you wear: Longjohns

10. A celebrity: LeAnn Womack

11. Food: Lucky Charms

12. Something found in a bathroom: Lipstick

13. Reason for being late: Lost

14. Something you shout: Look out!

15. An animal: Lepoard

16. A body part: Lips

17. Word to describe yourself: Loving

I tag Kristin and Amber :)

Sunday, June 15, 2008

Happy Father's Day

Good day here- breakfast, nap, steak for lunch, pool, playing with daddy, dinner, and BED. Got the rash GONE, still doing 1x babylax/enema combo and she stays CLEAN so her butt can heal-YAY YAY YAY!

Her party is Saturday so we are getting ready for that and Sunday is a mini-party at the pool with her friends in the neighborhood-cupcakes and of course, playing in the pool which she LOVES!

Oh, and my drama yesterday....I go to take out the trash and I hear all this commotion going on down the road....birds going nuts and I know they are after a cat. Sure enough, I round the corner and the birds are dive-bombing the CCC orange cat who has a BIRD IN ITS MOUTH. All I had on me was the empty recycling bag which I proceed to bat the cat with so he will drop the bird. And he then, the CCC 3 other cats were on me, trying to get the bird and now I also have the birds trying to get me! I somehow managed to get the bird in the recycling bag, shoo off the cats and the birds by then left me alone. A few hours later, I finally get a call from the wildlife rehab lady and I happily dropped off the bird at her home down near the beach. It looks like the wing is broken but she is confident the bird will be ok.

Our cat was going nutso b/c I had the bird in a box in our 1/2 bath downstairs and he perched outside this door for about 4 hours-the bird was mighty ticked about being in the box.

Keep in your prayers for our friends in the midwest. Chad and I used to live in Iowa and I worked in Iowa City. It unreal that the road I used to drive on is underwater-we knew it was bad but we saw the photos on the news tonight and it about broke my heart. Our new house is going to be built smack dab in the middle of a floodplain (which is most of VA Beach/Chesapeake) and backs up to a lake. I think I will be calling our agent about flood insurance tomorrow.

Wednesday, June 11, 2008

Now a happier post

Ok, enough about butt creams and burns and is a movie of Emma helping me unload the groceries Monday. She can't hardly wait for me to finish unloading the car so we can start this fun game. She actually takes the bags that I drop off at the front door and while I am making another trip out to the car, she is dragging bags into the kitchen for me.

I am bad about the bags-I have a ton already and she has seen me throw enough away to know where they go LOL!

Yesterday was picture day at JcPenny.....they always do such a good job considering my kid has never gone in there with a smile on her face until yesterday! Finally finally finally she didn't have a freak out attack right when they start snapping away. I will post them once I get the pics back in two weeks. But this is the dress she wore; I had one from TCP picked out but when I had her in this outfit for Chad's B-Day, I got so many complements on it that I swapped out dresses. She'll wear her pink dress on her B-Day in two weeks. And yes, for non-big Wal-Mart trips, I usually take my trusty green recycle-able bags but I was doing some major shopping on Monday and honestly, forgot to grab the bags. Blame it on the 100 degree heat :)

The office that shall not be named

It's almost like they don't want us to come in :) Yesterday, the butt burn still wasn't gone (and appeared to be spreading) so I called the above office in the title, who called me back and said to add Milk of Magnesia to the mix. Okay, a little strange, but I'll do it. Today, the butt burn looked the same, if not even WORSE. It makes your stomach turn looking at it and its gotta hurt like hell for her. I call the office, AGAIN, got the nurse who I don't really like (long drawn out story there) who said, don't used MOM, get some Maalox, pour into a bowl, skim off the top layer, mix in with triple paste and apply. I told her Emma's bottom was looking really really bad and that perhaps we should come in to make sure there is no infection. No, no no, we see this all the time, blah blah blah, keep changing the diaper, oatmeal bath, open air, ect. They said coming in would do nothing and they would still tell me the same thing. #^$^^^#^% But then I INSISTED that if by Friday morning, if there wasn't any marked improvement, that I was coming in, period, even though they don't do clinic on Friday, which she said was fine, we are always the exception there. WTH? Don't you want to see this horrible rash that the LT is causing my poor baby pain? Now, I could call my pedi who would get us in ASAP, however, I would fear she would pass out seeing this rash and call child protective services on me. Plus, the surgery people probably see this rash more often with colostomy take-downs, ect and probably have a tad more experience. I guess I will be waiting and seeing....I reduced her laxative dosage tonight, gave it to her 3 hours later than normal so hope for the best!

In our diaper cream arsenal, we have the following:

Triple Paste (the actual 1lb JAR)
Petroleum Jelly
Cornstarch Powder
Neosporin with pain relief
Milk of Magnesia
and good ol fashion baby powder

11 things people, ELEVEN different things, not to mention the hundreds of combos you can use to paste on the keister. There are probably some of you out there that haven't even heard of ilex or calmoseptiene and let me tell ya, they are about 10 bucks a pop for a 2oz tube!

What we are using today/tomorrow:
1/4 tube ilex (skin protectant)
1/3 tube neosporin (antibacterial and pain relief)
3 tablespoons of Maalox, cherry flavored
A good helping of triple paste
and cornstarch to thicken things up
-Mix all together in a disposable bowl and apply apply apply

If this doesn't work, I don't know what I am going to do!!

Sunday, June 8, 2008

A better weekend

It seems like when Chad goes out of town, all hell breaks loose around here :) I did manage to get Emma cleaned out by Saturday morning-tons of poop just waiting to come out. And today was a poop explosion in the crib so I would say the new laxative dose is working LOL. And no smearing of poop so her butt burn is almost gone. I may not need to get the silvedine afterall but that sounds like something good to keep on hand for emergencies.

Emma spent yesterday afternoon with her cousins and had a blast but I was there too so no break for me. Today, she went back over to her Nana's house (cousins still there) and I got 2 hours of alone time without her. Spent at the pool, trying to even out my tan. It's hot enough to fry an egg on the sidewalk, and perhaps a side of bacon.

I used to love laying out all afternoon. While I was working in Iowa, I used to get all of my running done, laundry done and put away, worked-out, got the grocery shopping done all on Saturday (I was up by 7 since I woke up at 5am during the week). That way, on Sunday (in the summer), I would sleep in, could go to Panera and drink loads of coffee, read the paper for an hour, come home and go lay by the pool all afternoon. It was so wonderful and relaxing and I read oh so many books. Flash-forward 4 years later: I got up at 6:30, made pancakes, tried to read the paper without my daughter taking pieces from me and going after the cat with them, gulped down my 1 cup of coffee and spent the morning cleaning up poop from the night before. But when I got to the pool, I just couldn't relax. I didn't have Emma to talk to and watch her enjoy the water and after about an hour, I packed up and went home. The laziness has lost its luster and the fact it was about 105 degrees (with the heat index of 110) outside. I came home, took a nice long shower, read another chapter or 2 in my book and went to pick up Emma. I think secretly I miss her when she isn't around-come to think of it, I am going to be sad when she starts going to preschool :( Its like I want the break from her, and when I get it, I am wondering how long is it until I get her back.

Chad is home (gone since Thursday) so I am sticking him on kid duty tonight. Hey, if you get to sleep by yourself, without a baby waking you up at odd hours, then you are so getting up to check on any crying coming out of her room.

I ought to make him change her tomorrow morning but I won't be mean :)

Saturday, June 7, 2008

Meet Lacy

My parents held out not even three months. Our dog Daisy went to doggie heaven in March and we had her for 15 years. Daisy was a black lab who is missed very much. And what do my parents do? They search CL looking for a dog, and not just any dog, a lab. And yes, they found Lacy who happens to be a black lab. They love Lacy already-even if she already chewed the squeaker out of 2 toys. Good dog!

Friday, June 6, 2008

It's been a "crappy" week

My moods are directly related to Emma's pooping pattern. If she is cleaning out every morning and clean the rest of the day, I am a happy camper. If she is not pooping great....well I am about as cranky as they come. I swear that even with the barium out of her system, it is still wrecking havoc with it. Dr.Levitt wanted an xray of her belly today to make sure she did indeed pass all the "special juice" from Monday, which she has. However, her lower part of her colon is full of poop and it isn't going to come out on its own. He wanted me to do an enema today, and if it didn't look so hot, another one tomorrow before re-starting her laxatives. Well the enema DID NOT GOOD WELL today-yeah, poop pieces came out but nothing dramatic so tomorrow morning I'll do it all over again, as well as 2 more saline enemas later on in the day before the LT tomorrow night.

*Sigh* She is pissed that she is backed up AND to top things off, b/c she is backed up and now is pooping constantly, her butt burn will turn your stomach. I have been trying everything on the market, and finally got even more cream today- triple paste. This has worked well, acutally it worked fast! Within 2 hours, 50% of the redness was gone. I slathered her up tonight and hope for the best. I am not expecting poop in the morning since she didn't take any LT today or for the fact that she has eaten 1 lunchable junior, 1/2 of my starbucks iced coffee (caffiene is a laxative people), 1.5 graham crackers and about 4 tiny pieces of a turkey dog, topped off with about 1 tablespoon of cheese. So if you do the math; what goes in=what comes out.....she isn't going to have a lot anyway. She did drink more today than yesterday so it's better than nothing right?

I tend to isolate myself when this is going on- it takes all of my energy to focus on cleaning the kid out that I really have little left to give. I missed taking her to the pool today with her friend b/c I wasn't sure if the poop would stay in her diaper so why risk it? Tomorrow we are supposed to go to the park but if there is no poop, we probably will not be going :( I just learn to accept these things and once we get back on track, we will be fine. She'll have another xray on Monday to make sure she is cleaned out as well as a trip to her local surgeon to get some silvadine butt cream to see if it can help with the burning from the LT.

Well, its 9 and I am wiped out. Better sleep while I can ;)

Thursday, June 5, 2008

We "thought" it was good news....

So our GI doc just called and said that the barium swallow did look good. There is no stricture but HOWEVER, he said there is some "indentation on the upper part of the esophagus" but very mild. He said he really studied the films and compared them to the ones in 9/07, 1/08 and this recent one and there is a difference from the one taken 9 months ago.

Blah, so at some point in the future, she'll need to go back to the OR for a dilation. Dr.Kobak said for now, she is fine and we won't even repeat the study until December at the earliest and March at the latest. Unless she starts choking a lot or starts vomiting again, he isn't rushing to take her back to the OR. He said to probably plan on it early spring. I trust him on this and he has always been pro "whatever I want" but reassured me that this is something to monitor and not worry about.

Dang it- but what can I do? She is "supposed" to grow out of the dilations eventually, i.e. Dr.Kobak said once she is in grade school, he doesn't suspect the need for any more OR face time (so he hopes). He said the first few years are tough but get better over time. Yeah, like the whole VACTERLS thing is supposed to magically get easier once they hit the age of 2 LOL!

Speaking of the girl, she is trying to wake up from a nap so I better run!

Wednesday, June 4, 2008

Just please be over!

Blah, you know the day is going to be bad when your kid is "barking" in her crib at 4am 'cause she hears dogs barking outside....well after that she never really did go back to sleep-which is making for a longggggg day.

I had to go to our urgent care facility today b/c I have been having some unexplained right-sided abdominal pain for almost 3 weeks GYN said everything was fine there and told me to go have someone else check the rest of me out (this was last week). Well, after a bunch of blood work and a KUB later (ha-ha), the doc still doesn't know what is causing the pain. Not the kidneys, not the gallbladder, not the appendix, no tumor, no constipation (he asked if I had used any laxatives lately and I was silently laughing to myself that I use them for my kid all the time. There is a possibility that its a very small deep abdominal hernia (which he doubts) or I pulled a abdominal muscle jogging and that would cause severe stabbing pain. Wrote out a script for NSAID (which I didn't get filled) and said if its still there next week, they will do a CT scan to see what is going on. Lovely. Took almost 4 hours and I had Emma, with no nap, screaming most of the time.

Then this afternoon, while I feel like crap, she:

-finds a bag of cat treats on the table, uses her stool to perch up and grab them, proceeds to shake all over the floor while I am using the bathroom.

-takes her shredded cheese I gave her in a bowl, and with my back turned switching the laundry, shakes the cheese all over the living room floor AFTER I had just vacuumed.

-ran upstairs to look for walgreens form for my calmoseptine I needed to reorder, come back down and she had GONE INTO THE TRASH and took out the bag of chips that were reduced to crumbs and had them all over the kitchen floor. Vacuum comes back out.

-3 major meltdowns over dolly and lovey. After the poop explosion this morning, dolly dolls and lovies had bits of poop over them so I decided to wash them all at once. BIG FREAKING MISTAKE b/c she went cuckobananas. Once they were out of the wash, she got to have 1 doll and 1 soaking wet lovie while I dried the other 2. I tried to distract her by putting her in the pool, but she got mad once she was in the water, chucked all the toys out of the pool and I had enough. She proceeded to scream on the floor for about 20 minutes until I stuck in the barney DVD.

Oh, and don't let me forget to say that her horrible rash is back-but it looks like yeast so I will be adding yet another layer of cream to our routine tonight. I have a feeling the barium from Monday is backing her up so we will be getting a KUB for kicks tomorrow to send up to Dr.Levitt for his take on things.

For not napping, she shows no signs of slowing down. I can't put her to bed yet because our 5 sets of sheets are currently in the dryer- the sheet I just put on last night, you guess it, in the dryer too. She has gone through about 5 sets of sheets in less than 10 days. Unbelievable. I should be happy she is having blow outs but seriously, I hate with a passion, putting on sheets for her bed/crib. The $&$*# bumper is still on and it is such a pain to get the mattress out of the crib (and then the cat and kid will try to lay in the middle of the mattress while I attempt to put the sheets on) and then trying to get the mattress back in the crib is a whole ordeal.

I am in a b@tchy mood right now, and it's Chad's Bday, and I didn't go to lunch b/c I felt bad and from the way our house looks right now, you would never tell that our cleaning lady ( a patient) was just here 3 days ago. It never ends around here :) Drinks for everyone today!

Tuesday, June 3, 2008

Good News!

Yeah, she was looking at the "special juice" in the cup, just for her.....

NO STRICTURE!!!! Our upper GI came along with all the usual dramas but Jeff, the PA was amazing as always (this is our 7th or 8th upper GI since birth and he has done every one of them) and we finally got a nurse who LISTEN to my needs before the test-amazing right?
For those of you who read this and have been spared the "TE" part of VACTERLS, you lie your kid down on this table and the lovely machine above will come down and "hover" over your child, taking real-time pictures of your baby swallowing chalky-apple flavored barium. Emma is positioned on her side first and then on her back. To the left of this machine, you can "see" the action happening. Thankfully for us, it's not a full upper GI per se, we just have to get her to swallow enough barium to coat the esophagus, look at the site of the anastamosis to make sure that all looks good and we are DONE. Don't need to follow it down into the tummy or small bowel.
For about a 10 minute test once it's started, it's about $600 that is billed to the insurance company-and we get about 2-3 a year-ugh right?
I will have to call her GI doc tomorrow to get verbal confirmation but thank God we don't have to take her back to the OR anytime soon-we need to catch a break.

Sunday, June 1, 2008

What is normal-part 2

Is it normal for you to be riding in your carseat with your dolly-doll and lovies on your head....probably not but you do it anyway!

What is normal?

I have been reading a lot of blogs lately about "normalcy" and the lack of it once you have a child born with a spectrum of birth defects. What's frustrating about the whole pony show is really there is no end in sight. Maybe I am being cynical here but some of the things our kids will manage for the rest of their lives. Yes, some things will be very "normal" for them and no one will blink. Other things will be different to outsiders, but very "normal" for them. Here are some things that are "normal" for us at the moment......

.......I have babylax in my purse, one in my jewelry box (my emergency spare), a box downstairs, a box upstairs and another box at my MIL's house. Oh yes and my SIL has one too stashed with some of Emma's diapers that she doesn't know about.

......I buy massive amounts of laxatives, online, b/c they are cheaper to buy in bulk. We use about 3 bottles per month, more than most people use I assure you.

.........we have MULTIPLE bottles of KY jelly stored in our house and it's not being used for THAT purpose LOL

........we have solid metal rods in a pretty basket that sits on our kitchen counter that you must stick up her be-hind- these are not something that you want to roast marshmallows on. People, grab the skewers please.

......we have more money invested in diaper creams than wine (or any other alcohol for that matter) and for a fact, we have more variety of diaper creams than our local pharmacy carries.

...... we go to at least 2 docs per month that ends with -ologist or -regon or -ist. Depending on the month, sometimes more, sometimes less. We have yet to have a month go by since she was born that has been "appointment free" nor do I see it coming anytime soon.

.......Emma's medical file(s) take up more room than our last 5 years worth of tax returns.

Bizzaro in most "normal" worlds, but for us, these are things we have come to accept into our lives. What gets us through is knowing that there are other people like us out there that also have some of the same things stashed away in their homes. That's comforting to me and lets me know that I am not alone.