Dylan's Diary

Alethea

2008-10-07T11:39:00.001-07:00

Sorry everyone for having to read this. But Alethea, I hope you read this. Your email address wasn't on there again. Mine is ashleysmith52@gmail.com. We are going to be at the ICN reunion!! Yay!!! I hope to see you guys there.

First Football Game with Daddy!! (And the weekend following, hence the tutu he kept putting me in)

2008-09-08T16:46:00.000-07:00

After mom got ahold of us.
He dressed me up in my stuffed bears clothes, would you be happy?
Isn't this what they do in Indiana? Farm?
Daddy's little girl in my tutu!

This is the outfit dad keeps putting me in. A Tie-Dye Onesie and a Pink Tutu
All my puppies, minus my favorite one.

My new Big Girl Car Seat!

Tucson 8/08

2008-09-03T10:17:00.000-07:00

More Chicago Pics

2008-09-03T10:03:00.000-07:00

Chicago Pics

2008-08-19T10:42:00.000-07:00

Congrats to the Hinton's and Hastings

2008-07-24T21:13:00.001-07:00

This week has been a big week for babies in our lives! Little Carly Hastings (6 months) had her open heart surgery on Wed. It looks like everything went well. She was in surgery for 4.5 hours, 89 minutes of that was on the by-pass machine. She has already been taken off of the vent, and the doctors seemed to be pleased with her progress (from dad's email). Carly's parents have been so strong. Please keep this family in your continued prayers.

And Ashley and Andrew Hinton welcomed their little girl Lucy into the world today! Lucy is a gastroschisis baby too!! The Hinton's live in Atlanta and we have been emailing buddies (mom, ashley, found the blog). Lucy is such a blessed little one to have parents that have done their research. Please keep Lucy and her parents in your prayers also. Dylan and Lucy are going to be great friends when they grow up, I just know it! In the meantime Lucy needs your prayers. We all know what this journey in the ICN/NICU is like with a gastroschisis baby. Such a roller coaster. Only prayers can heal this baby faster and allow this family to stay strong and sane.

Congrats to these two families. Our thoughts and prayers are with you!

They scheduled a Test!!

2008-07-18T11:44:00.001-07:00

We got a call this morning to schedule the Breathe Test!!! It is for Tuesday. Apparently Dylan must fast after she goes to sleep. We will go to the hospital at 8am. She will have to be there all day and have to breathe into a mask every half hour.

We have solid poops right now, which makes me think we missed our window. I doubt we will find out anything! But, at least someone is doing a little something.

Trip to the GI

2008-07-17T11:07:00.000-07:00

So we went to see the Phoenix GI on Tuesday at 3:30. Talk about a "makes you want to pull your hair out" appointment. We have seen this doctor probably a dozen times since we have been here. At probably our 8th appointment she introduced herself to Casey and said "Hi, I'm Dr.XYZ, I don't think we have met yet." Casey has been at EVERY appointment. So this kinda weirded us out. I know they are busy, but seriously, make a note in the chart. All 12+ appointments we sit and have to go through Dylan's entire medical history. Why every time? Don't you take notes? Can't you remember the gastroschisis baby that you get calls on every week? Apparently not.

So, the first thing she says to us is "So, why are you here?" P.S to all those doctors out there, not a good thing to say to a parent. READ YOUR CHART!!!! When you make an appointment you get asked 50 times why you are making the appointment. You have had phone calls from another doctor. Can't you take 30 seconds to read something before you walk in our room. Saying "So, why are you here?" gives us very little faith in you. It makes us seem like we are just a number. Casey and I just looked at her dumbfounded. We were told last Thursday that she was on board with admitting Dylan into the hospital. And then she had the gaul to ask us why we were there. AHHHHHHHHHHHH!!!!!She told us that our pediatrician told her we were having a hard time getting ahold of her. No, she just takes 2 weeks to call the Pediatrician back. And the last time we were at GI (1.5 months ago) she told us she was looking into a slew of tests to run on Dylan and that she would get back to us as soon as she knew anything. This was 1.5 months and we hadn't heard a darn thing.

So, in usual fashion with out GI appointments we go though every poop Dylan has had in 8 months. What she eats. Yada Yada Yada. And I am not kidding you when I say this. She must have asked us 18 times if Dylan is throwing up or refluxing. And all 18 times the answer was the same. "NO!" Dylan was a big refluxer in the past. So, I know when she is and isn't. And she hasn't been, which I thought was odd too. But, again, we say No all 18 times. Why must she ask 18 times? Does she think after 15 I will change my mind? I am beginning to think that Reflux is the GI version of ADD or Autism. You know that FAD diagnosis. It is what all the cool docs are diagnosing kids with. Its the diagnosis of the week. I feel like that is what Reflux is. They just don't like the answer that Dylan isn't throwing up!

I handed her the email I received from UCSF with the lists of tests they were suggesting. She responded with she thought they were a little knee-jerk. KNEE-JERK? You don't think wanting to put a child in the hospital before running ANY tests was knee-jerk, but wanting to do an ultrasound is knee-jerk? You have got to be kidding me.

Then I told the doctor that I wasn't so concerned with the poor weight gain. Yes, she isn't gaining weight, but she isn't loosing any. That seems like a positive in my book. My concern is the pain that Dylan is in. Why is she is in "can't breathe it hurts so bad" pain? Ya wanna know what she said to this? "Well, What do you want me to do? Admit her into the hospital? I can do that!" This is when I start to crack my knuckles and start mentally stretching my legs and prepare to Ninja kick her in the head!!

After I think 2 hours in the appointment she walks back out to get her prescription pad walked herself back into the room with her tennis shoes that have springs as heels (total fashion faux-pas), sat herself down and asked us if we had any questions before we parted. I said "Ummm ya, what is the plan?" She looked at me like I was an idiot. Well, we have been here for 2 hours and we knew nothing. She then told us she guessed she could do blood work on her, but that we shouldn't expect any different results than we had had before. Oh, and that she needed to be on Zantac for her Reflux. Jesus, Mary and Joseph, for the 19th time she doesn't have REFLUX!!!! What about the XRay? The UltraSound? The Breath Test? She said she would look into all those AGAIN, I doubt we will hear back from her.

So needless to say we are officially looking for a new GI. I can't live with this any more. Dylan shouldn't live in this pain.

But, here is my prediction. We go back to the Pediatrician on Tuesday. At that point Dylan will have gotten through this funk, like she normally does. She will have gained weight, we will have solid poops, and the pain will have subsided for a couple of days. The doctors will think they have magically fixed her and that nothing needs to be done. Then is 4 more week the same thing will happen, she will stop gaining weight, be in pain and it will take them ANOTHER 6 weeks to figure out what is going on. And by the time they try to run a test, she will be over that hump again. And for the rest of our lives I will be going crazy from doctors not knowing what is going on with her.

Can you tell I am exhausted and frustrated yet?

UCSF is back in the game

2008-07-15T13:29:00.000-07:00

So as of last Thursday the doctors here wanted to admit Dylan back into the hospital. Casey and I said "NO"! Even though she hasn't gained weight in over 1.5 months, she is still our happy little Dylan. They didn't have a game plan once they put her in the hospital. Nor have the run ANY tests. So what good would her being confined to a small bed do? Nothing if you ask me. She would do much better having tests done and being able to go home at night. She is just small. No infection. Nothing. Pain, but why don't we have blood work done, maybe an XRAY? Why do we have to go 1.5 months before we are even suggested to see a GI doc? Last week I was asked what UCSF thinks off all of this. What do I know? I can't read minds. They are the doctors, shouldn't they be talking to the experts back in SF? Not the mom! So, I called UCSF last Thursday and talked to the surgery clinic and let them know that they were thinking of sending us back to UCSF, but that no tests have been run. By 10am Friday morning I had a phone call from the Pedi Gi at UCSF talking me through everything. Within an hour I had a list of tests that they would like run. Why has it taken Phoenix 1.5 months to even make a move? Agghhhhh Thank GOD for UCSF!

When will someone have an answer?

2008-07-02T14:29:00.000-07:00

So at Dylan's 6 month appt the doctor thought we could go until her 9 month check up for the next appt. That made me nervous. We didn't have much weight that we could afford to lose. And 3 months seemed like a long time to not know if we were going in the right direction. So we opted for a 7.5 month check up, which ended up being almost an 8 month check up (can you believe it has been 8 months?!?!). We have had a rough time for about a week now. Dyl hasn't really wanted to eat, which I just attributed to teething. But she is ALWAYS starving. She went back to waking up 2-3 times a night just famished. She would down a bottle in no time flat. We are still eating our normal 50+ ounces a day, and now it is at 24 cal+.

We always start off our appointments with a weight check. That sets the tone for the appointment. I have learned to not have any expectations. It seems when I am thinking everything is going well, we find out it isn't. So back to the weigh in. She had only gained 3 ounces in 3 weeks. Typically babies should be gaining between .5-1 ounce a day. my big concern was that she had just had a 5-6 ounce bottle right before the appointment. So has she even gained anything? (if you get grossed out, skip the next paragraph)

Her poopies are SOOOOOO huge and SOOOOO stinky. And not food stinky. I know what broccoli and pear diapers smell like. This is "something inside of me is rotting" stinky. And she is having frequent and large ones. People actually leave the room gagging when she toots or poops. Poor thing is gonna have a hard time in school!! The stinkiness and the constant change in consistency cues the Dr.'s into 2 things. 1) malabsorption 2) bacterial overgrowth. If you look at the outside of her tummy you can see she is visably larger and dialted on one side versus the other (the side where her jejunum is).

She is still our happy girl. Not as active since she doesn't feel well. And she is sleeping alot more. She isn't AS giggly and playful as normal. But by no means a hard baby. It just gets frustrating that we gain gain gain. And then the brakes go on. This might just be the pattern with her. Which is fine. It just scares us when the doctors start to get concerned. So, we are in a holding pattern right now until all docs can converse and get on the same page. The GI doc is out until early next week. My guess is they are going to want to treat for over-growth. Which I am fine with, but I would like to make sure that is really what we are dealing with so we are not shocking this poor little girls body with any more antibiotics. She has been on it too many times in her life. There is a breath test that can detect overgrowth. We just aren't sure she is viable for it due to her age. I will do everything in my power to make sure we know what we are dealing with before we give her any more meds. She only has so much bacteria in her body, we don't want to kill it all if we don't have to. We all need a certain amount of bacteria to keep our bodies healthy.

I will let you know as soon as we know something. Oh, people have mentioned her metabolism before. As in maybe she has a super fast metabolism and that could explain it. I asked the Dr. is a BMR test was a good idea. And she just said "Ash, lightening doens't strike twice, besides Dylan is developing too well to have metabolism issues". Not sure what that means, but there ya go.

Oh, and Dylan think she is Mogali from the Jungle Book. She is crawling with her toosh straight up in the air and on her hands and feet. Just like Mogali did in the movie. She might have learned it from all those times her Daddy and Uncle Jay watched the movie. Who knows!!

Dyl is such a blessing and such a doll. Thank you for your continued prayers and support!

Our Potluck BBQ Pictures

2008-06-16T00:17:00.000-07:00

I am a crawling girl.....well almost!
I have had 5 haircuts so far!

Miss Amanda's bracelet was the best toy!
I have 1.5 teeth!
I do a tri-pod everytime I get ready to crawl.
Too many things going on!
Seriously Aunt Nancy, you are BLINDING me!

A quick update on Miss Dylan. She turned 7 months last week! Wohoo!!! The next day her first tooth broke through. We didn't even know she had one until she bit Dad's finger! We are almost fully crawling. Right now it is ALOT of rocking. She is 14.5 lbs now. Still petite but she is hitting all of the developmental milestones early. The doctors are a little concerned with the volume that she is taking in. We are at about 1500 calories a day, which is about 250/kcal.kg.d. Which means she is eating for more than 2 babies, but gaining for less than one. They just can't quite figure it out. Casey and I went it to Monday's Dr. appt so excited. Dylan has been doing great since the Kidney scare in April. We thought the doctors would let us get off of the $296 a can formula and on to something different. We were told minimum of 3 more months on it. And the rest of the news wasn't as great as we were hoping for. They want us to go back to UCSF to meet with the surgeons to see if removing a section on her intestines is necessary. I don't think it is. But I would much rather have UCSF tell us that, than the docs here tell us she needs it and cut her open when we had other options. So in the meantime we are bringing stool samples to the GI office for fecal fat and reducing substances. Right now they are just doing qualitative tests, when I think they should be doing quantitative tests, but maybe soon they will realize it. Her body just doesn't do the same thing twice, so it is nice to at least have a trend to follow. We are also trying to figure out if we need to treat for overgrowth of bacteria again. She is so tiny, and has already has too many antibiotics as it is. So we are trying to figure out if she is old enough to so a breath test that will tell us is overgrowth is occurring. Probiotics have also come up again in discussions. With most babies, I would say go for it. But there are cases of infants with weak intestinal lining and then probiotics (good bacteria) get into the childs blood stream, mainly Lactobacillus GG . And bacteria in your blood stream is NO good. So I am not willing to take that risk, since we obviously do not know what is going on with her intestines. Things are going really well though. She is just an AMAZING little girl. She puts a smile on everyones face. I could have never asked for a more amazing miracle. She just keeps going and making strides. We are so blessed. Thank you for the continued prayers.

All BBQ pictures taken by Aunt Nancy

New Pictures!!!

2008-05-30T13:10:00.000-07:00

Easter Day

2008-03-24T17:34:00.000-07:00

Happy Easter!

2008-03-21T09:37:00.001-07:00

Happy Easter!
I am a Bunny!
Where is my chocolate?

Bailey Lou the Easter Bunny

Me and My cousin Bailey
My Cotton Tail!

Dad and Me on St. Patrick's Day, is he wearing a skirt?
Playtime was exhausting today!

Go Noles!
Uncle Adam bought it for me!

Auntie (Cousin) Anna

Great Aunt Linda

More More More

2008-03-08T13:13:00.000-08:00

New pics, I will write later!

2008-02-22T15:30:00.000-08:00

Hello Everyone!
I can almost stand on my own
I was watching Peter Pan with Daddy!
Before Daddy's Soccer Game

Me and My Cousin Bailey Lou
We are 18 days apart, and we are going to go to Disney when we are 3! Aunt Amanda told me so!
My puppy jennings, she is so good with me!
My bug tu-tu

Smile!

If I stare long enough maybe my binky will get back in my mouth
Big Girl Pose!
Big Yawn

Hello Again!
I'm so cute!
I didn't eat it, I swear!
Okay, fine, I did!
My photo shoot with grandma, I didn't go so well!

At home on Daddy's shoulders
Naptime with my favorite blanket
Auntie Des

Great Uncle Ab and Great Aunt Carolyn

T-R-O-U-B-L-E
Great Grandpa and Carla
God-Cousin Max
Watch out Ladies!

Best Family Ever
There is a baby on the porch?!?
Suprise!
She loves me!
I don't look like a beer this time!

Miss Angela!
...and her twins
Miss Jackie!

Mommy and Daddy

Mom put all my bows in my hair!
Aunt Sara

Will someone tell my great grandmother I have red hair!

Look, I am reading-in spanish!

I was so proud

On a walk outside!
Mommy and Daddy's date at the golden gate park carousel
Look what dad did!

Going for a stroll in the hospital

First time "big daddy" held me
I love him!
We had lots of talks!

My Aunt Sara!

My HIDA scan
they put nuclear medecine in me

Grandma and Me

Aunt Sarah getting me ready for my test
They looked at my liver to make sure I was excreting bile. I was! Fhewww

I had to have a blood transfusion, I didn't hurt at all!
Went for a walk outside!

during my transfusion, I was much better after it!

Great Grandpa!

Okay, So we are home! Finally! Casey is home too!!! Life is crazy, but I promise to update soon and let you know how we got here!

New Pictures!!

2007-12-28T16:15:00.000-08:00

Address

2007-12-15T00:20:00.000-08:00

Many people have asked for our address out here to send cards, so I figured this was the best place to put it!

1640 Scott St
San Francisco, Ca 94115

I am going to write a complete entry on the Ronald McDonald house, but I just want you all to know how AMAZING this place is. If you ever are in need of a place to donate time, money, or services, this is your place. We would not have been able to have this little girl at this hospital if it wasn't for this house. We feel so blessed and have met so many amazing families since we have been here.

He is coming home, He is coming home!

2007-12-14T23:48:00.000-08:00

Dylan and I got the most exciting news today! Daddy is coming home. Casey received his new orders today. I got the phone call at 3:30am this morning. He got new orders for San Francisco, he will be working at a military post office. Not an ideal job, but great hours and we will get to be a family. We are trying to get those orders rerouted to Phoenix but we don't know how possible that is. All that matters is that he is back in the US, the rest we can work out!!

So, since the doctors muttered the D word (Discharge)on Wednesday, things have gone a little backwards with out little Pixie. At her Wednesday night weight check she had lost 40 grams. The doctors wanted to fortify her milk to 22 calories to see if the caloric intake would allow her to gain weight. We didn't want to increase her amount of food, she is already struggling with her 48cc's sometimes, so fortification seemed like the answer. Normal Mother's Breast Milk, also known as MBM is 20 calories. So at last nights weigh in she was down an additional 60 grams. This is puzzling the doctors. Yesterday she did start having some emessis (throw up) about an hour or 2 after feeds. Today they upped her caloric intake on her MBM to 24 to see if this would help. I sure don't know how to increase my calories in the breastmilk, so sometimes I worry that this is just masking a problem and not fixing it. She will be a breastfed baby when we leave the hospital because it is so easy on her stomach, so I fear we run into this again. I had the surgeons consult on the emessis, they stated that she was on an anti-reflux agent in her TPN, and since her TPN was D/C's (discontinued) on Wednesday she has not been receiving it. So they wanted to put her back onto the anti-reflux meds to see if that would help. She received it at noon today and has thrown up at least 5 times since then and threw up 5 times between midnight and the time she received the meds. The nurses said sometimes is takes some time to take effect in the body, so she should stop throwing up soon. This leads to some of the hypothesis on the weight loss. We think she might be loosing weight because she is throwing up so much. A Resident thought maybe it was because she was excerpting too much energy trying to breastfeed. I only breastfed once today and made sure it was after her weight check so that would could eliminate that thought. And lastly there could be the possibility that her intestines are not absorbing nutrients correctly. So, we need to figure this out! Tonight she gained 10 grams, its not much, but it is something, and best of all it isn't a loss!! She did have a big poop right after that, so I have a feeling if she was weighed 2 minutes later we would have been at another loss. But, tomorrow is another day, we will see!!! Keep your fingers crossed.

Thank you for all of your thoughts and prayers. I know that they are the only thing that is putting my family together. I can never say enough thanks! What an amazing Christmas this will be!

So Much has happened

2007-12-12T22:34:00.000-08:00

Okay, so I will write more tomorrow, there is a line for the computer. But we have such exciting news. The doctors told us today that Dylan should be ready to be discharged next week. Last week they told us 5 more weeks, but she has done such great this week that they think she on track to leave next week. Yesterday they upped her to almost full feeds and so she was allowed to recreationally breast feed. This girl is made to eat. She just latched right on. I feel so lucky! I know that this can be such a struggle for many mothers and babies. This is part of the reason that I was so hesitant to give her a bottle in the first place, but much to my suprise she was all about the breast! The doctors allowed her to "play" twice today. She did so great both times. Her stools are still very painful and she scream bloody murder through them, and the stools are just liquid, so I brought this to the attention of the MD's tonight. They want to conference this with all of the teams to figure it out, they think it could be because her intestines were so crammed in her body that there could be a kind of kink that things are having to work past thus creating the pain. One of Dylan's favorite doctors assured us she should grow out of it but he still wanted to consult with the rest of the teams. So if all goes well and she continues as she is doing and her stools work their way out she should be a free woman as of next week!! Just in time from Christmas, what a great present! God Bless Everyone!!! Thank you for the prayers, please keep them up!!

Oh, and congrats to my friend Brittany who just had her beautiful little girl this past Sunday, Miss Lily August Wray.

17 cc's

2007-12-09T21:24:00.000-08:00

Great-Meema's PICC line gown!! She is going to be a billionaire!

BFF since 3 years old!
Dylan's first bottle!
She wasn't so sure of it at first, it was her first taste of milk!

Hmmmm...what flavor is this milk?
We were fighting! She was doing so well!
Almost done!
Getting burped after the first bottle.

This was the retake picture.....
....becuase I looked like Godzirra in this picture!
Look at that Ass Kennemer Women!

Getting burped on "Mimi's" Lap
After the first bottle!
I don't know why we're green....but we still look cute!

17 cc's, can you believe it?!?! We had a sit down with the doctors yesterday. They wanted Dylan to take a bottle, they were worried that since she is term now she could loose her suckling reflex if it isn't exercised. Sucking on a pacifier uses different muscles and skills that sucking on a bottle. She has mastered the pacifier, but could loose the ability to learn how to suck food if we didn't start. As most of you know, I am ANTI bottle because I want Dylan to breastfeed and I have read so much literature about nipple confusion. But, every doctor and nurse that I talked with yesterday (and that was alot), assured me that nipple confusion was a myth. After discussing this with a MILLION people I decided that it was the right choice to allow her nipple. We kept her NG tube in so that we wouldn't have to replace it if nippling didn't work out that well. BUT, this girl is born to EAT! She has taken every single cc through the nipple, nothing has had to go through the tube. I think when we go in tomorrow morning that the nurses will have d/c'd the NG. WOHOO!!!! I can't believe we are already up to 17 cc's. Her cheeks are filling out. At last nights weight she was just shy of 6lbs 6oz. Casey is so sad that he is missing her growing. But I have all of the faith that he will be home soon. I am off to bed right now, I need some sleep. I need to start getting some sleep before this little angel comes home with me and sleep is not easy to get. Hope everyone's holiday season is getting off to a great start!

More and More Everyday!

2007-12-07T23:20:00.001-08:00

Best Buds!
Me and Mommy
I think I figured out this thumb thing!

Me and Jerry the Bear swinging away!
Daddy found out his finger pacifies me.

I screamed, he screamed back!

So Cute!

Look at how long my hair is!
So peaceful
So pensive
Big Kiss!

My Auntie Tanya Tattoo Outfit, Daddy's favorite!

My tights and dress shoes!
They were a little big, but the ruffles on my tush were too cute!

Night, Night!

Big Cheeks from just eating!
When am I going to get out of this joint?

Another big yawn!

Auntie Meredith!
We had a good talk!
I tinkled on my last out outfit, time for a change!
I look like such a chunk, I'm 6lbs 3 oz now!

Riding Dandy!
Porter the Pirate Pooch, from my bestest friend Taylor!
Best Friends!
Dandy, My first Texas Horse!
Auntie Renea!

Daddy made it back to Japan safely. Boy, do I miss him!!!! But I am trying to be real good so he will come home! I was on 3 mL's of milk yesterday a.m. and then last night they up'd me to 6cc's of milk. And I did so well on that that this afternoon I went to 9 cc's. I seem to be doing very well!!! Mommy also told the doctors that my stitches weren't disolving, so this morning they came in and took them out. Mommy also did massage on me today, the nice nurse yesterday taught her how to do it, it helps my tummy when I am gassy. Also, Mommy and Shade's Mommy (the other gastroschisis baby) have become good friends. And lastly mommy was evicted from the Breast Milk Freezer today. It has made for lots of laughs. She will explain more later. Thank you for your prayers to get my Daddy home!

Daddy Is Gone!

2007-12-05T11:38:00.000-08:00

Mommy can't say much right now because she is so sad. She misses Daddy very much and he has only been gone a couple of hours. I really need my daddy home ASAP so that I can heal fast!! Please say lots of prayers that the NAVY understands how sick I am and that I need my daddy's kisses to make me better and hopefully they will send him home to us very very soon!
dylan

It's Her Very Merry UnBirthday!!

2007-12-04T12:54:00.001-08:00

So today was Dylan's Due Date!!! This little Angel However graced us 4 weeks early! I really wanted to throw her a birthday party today, but what do you do for a 4 week old? Since this is our last day with Daddy we took Christmas pictures and after that Daddy picked out her outfit for the day. Dylan is currently wearing her onesie that Auntie Tanya got her!!! She has had a couple of feedings today and seems to be tolerating them! Wohooo for milk!

Feedings Resume

2007-12-03T12:38:00.001-08:00

So, last night was a VERY rough night. Dylan is usually the happiest baby ever and doesn't cry. But her tummy was so distended and tight yesterday. She is normally at 27.5cm around her belly button and last night she was at 31cm after those couple of very small feedings. At about 9 o'clock the melt down began. From 9 until after midnight this little girl just screamed. It was a "I'm in pain scream". We got her Tylenol and that didn't seem to help much. And when we looked in her diaper there was a poopy!!! She was still screaming, so I rocked her more, I could feel gas in her diaper. Still screaming!!! Daddy sang to her, Still Screaming!!! She was burping when he was holding her, more belly actions. We checked her diaper again, more poop. WE repositioned her, still screaming. Nothing was working. We finally got her settled out about midnight and went home to get a couple hours of sleep before returning. The surgeons were at her bedside when I walked in this morning, they said she looked good and that we should resume feedings. The pediatrician came in and looked at her belly and said since it went down and her replogle was running clear we were in deed going to resume feedings. I expressed my concerns about the NG to her, I asked her how she felt about an NG and she said it causes nose bleeds, so they don't like to use it. I told her I wasn't fond of the idea of placing an NG and then removing in in another day when her belly increases again. She totally agreed with me. So Casey, Myself and the doctor decided that we would place and OG in her mouth (just like her replogle) and it would feed her her milk, and then be removed after. If this works for a couple of days the distension doesn't occur then we will replace with an NG. I just do not want to keep placing and removing something in her nose. She is used to something in her throat. So we just resumed feeds and she finished one about 5 minutes ago. Casey is holding her right now and just told me that there is something going on in her diaper. He is very funny when he says this. He scrunches up his nose when he says it, but I know he loves it!!!

So I do not think that I have said this, because I have been in denial. But Casey leaves on Wednesday. I cannot believe how quick this month has gone by. I do not know how I am going to do this without him. He has been an invaluable support to Dylan and myself. I just love sitting here watching the 2 of them play games and rock out with each other. Such a beautiful sight.

I will update later!!

Some new pictures of the week!

2007-12-02T18:13:00.000-08:00

Rockin' my MoHawk that Daddy gave me!!
I got to try on my Christmas Shoes (We thought they would be too small)
I could still move!

"Mimi" and I took a nap together!
My cheeks are filling out from the medicine!
I took another nap with the bear Auntie Des and Uncle Jason sent me.
Wow! Look at my "Mimi"!!!
I'm ready to play!
Why do I have on a snorkle?
This was my first time in a chair, it also put me to sleep!

He never puts me down!!
Tender
We play games sticking out our tounges at eachother, I always win!
Mommy says he's the cutest!
Pretty much the most perfect family ever!

I love pulling out my tubes, I drive the nurses (and mommy) crazy!

Hello!!
Give me that camera, no more flashes!
Okay, maybe one more!
Seriously, get me out of here!
Someone come get me!

Daddy doesn't know where this foot came from, he swears he tucked it into my blanket. What he doesn't know is that I am Baby Houdini.

Me and my mommy. I wanted to have my hand in my mouth!
My new Belly Button the doctors made me.
My amazing hair, daddy styles it every morning.
He knows just how to make me better!

Daddy's favorite picture! What is she doing to me?!

Nap Time AGAIN!
This is so exhausting.
Daddy wrapped me up all warm.

I fell asleep like this, mommy and daddy thought it was SO funny!

I some how managed to get a PICC line, 2 fingers and a Pacifier in my mouth, a finger in my nose, and one in my eye. Sounds comfortable!

My MoHawk again, Daddy and I were playing!

Mommy doesn't know what this face is!

We are so darn cute together!

I think I might be a blonde

Mommy and Daddy couldn't stand this outfit they put me in in the ICN, they brought me my clothes.

Mommy's Milk collection

My NG tube, it didn't last very long!

Mommy and Me

Thank Heaven For Little Girls!

My Visitors this week!

2007-12-02T17:53:00.000-08:00

Aunt Terri got to hold me first!

I was so comfy in her arms!

Max, Nadine, and Aunt Terri!

I'm her baby laguna!

Max took such good care of me when I was in Mommy's

Tummy

Not only did I get his last name, I got his ET fingers!!

Uncle Jay would have held me, but he had his hands full!!

Aunt Vickie couldn't wait to get her hands on me!

So perfect!

Uncle Marc did such a good job holding me! That is....before he pinched me.

RJ, Kathie, and Uncle Craig at lunch.

Jenny and Taylor "I want Diamonds" Cirell.

We were beautiful street art!

Uncle Craig Loves Me So Much!!

Kathie couldn't get enough of me!

Trouble in the ICN

Mommy and Daddy know best!!

2007-12-02T16:34:00.000-08:00

My NG tube is out and my replogle is back in. The Surgeon came in this morning while mommy and daddy were here. Mommy told her that I hadn't pooped in a couple of days and that according to my chart my abdominal girth had gone up in the past 2 days. The surgeon was concerned about this and stopped my feedings immediately. And then she ordered a film of my belly. Mommy and daddy went to lunch with my visitors of the day, Uncle Craig, Kathie, Taylor, Jenny and RJ came to visit. When they came back my NG tube was out and my replogle was being placed back in. So, just like mommy and daddy thought, my replogle was gonna be put back in!! What would I do without them?

2007-12-01T15:48:00.000-08:00

My NG tube is in! I didn't cry at all, the nurse said i have a high pain threshold. I got my first 3 CC's of milk into my belly. I threw a little of it up, but then mommy rocked me to sleep on her chest. You should also visit my myspace page that my daddy made for me....www.myspace.com.dylangilhooley.....he is really funny, mommy doesn't think so most of the time.

Feedings begin!

2007-12-01T11:50:00.001-08:00

So the doctors think that Dylan is ready to begin her feeds. When I had spoke with the pediatrician the other day he had told me that she would not be bottle fed, this made me happy. He said she would be fed through a tube so that they could quantify her intake and that they would allow her to "recreational feed" (on my breast) once a day. I asked the doctor if the tube was an NG tube and he said no, they only like to do NG (nasal gastric tubes) if the baby is going to have it for a long time, instead he wants to use a OG tube, this is similar to the replogle. It would go through her mouth and into her stomach and send the food to her tummy that way. When we came in today the nurse told us that feeds would begin today and I asked her in what form that would be and she said through a bottle. I wasn't very happy and told her what the doctor had said 2 days ago about feeds, I am just concerned about Dylan getting nipple confusion. So, she paged the residents and then the attending and spoke with them about the plan. The doctor said to put an NG in place, this made me grumpy. He had explicitly said 2 days ago that he does not want to do an NG tube, this was his idea, why would I think this up? I know nothing about NG vs. no NG. Oh well!! So they will place the NG today and then give her her first 3 cc's of breast milk. Hopefully it all goes well. She didn't poop at all yesterday, which is weird since she pooped 6 times that day before. And I don't know if you remember but yesterday is also when her replogle came out. I asked the pediatrician if those correlate and he said no, but he wanted to listen to her belly. So he listened and said that her bowel sounds have dramatically reduced. He said that that could be why she isn't pooping, and then he let us know that this could be one of those big step back times. He also told us that her replogle could have to be placed back in if her bowel sounds didn't come back. They are going to give Dylan a sepository to see if that will get her to poop. And is nothing comes out after the feeds then it will definately go in (the replogle). This littel girl has such a great personality. Dad and her are rockin' out to the Beatles (AGAIN) while Dylan sports her signature mohawk. Today we get to put her in her first clothes!! Wohoo!!!!

Replogle is out!!

2007-11-30T13:00:00.001-08:00

We will update with the new pictures and tales (or lack there of) of the week a bit later. But in the meantime I just wanted everyone to know that they took out her replogle completely this morning. They couldn't decide yesterday if they were going to remove it or not because it was still outputting neon green, but after multiple surgeons took a look at it the concensus was to remove it and give her a chance without it. So that is where we are! Our little angel is down to just her PICC(sp?) line and leads to dedect heartbeart and respiration. She is currently being rocked to sleep while laying in Daddy's arms and listening to to new "I'm Not There"(Bob Dylan Movie) Soundtrack. What a beautiful sight. I always knew he was going to make a great father, but he blows me away everytime I see him with her! What an amazing man! (He never reads this, so I get to say whatever, he isn't into this mushy stuff!)

Synopsis of the past couple of days!

2007-11-26T11:43:00.000-08:00

So in the last update we had said that the doctors had discussed putting Dylan's Replogle to gravity on Thursday. Thursday after her very large throw up she still continued to put out alot of dark green almost black discharge. Friday we went down to Fisherman's Warf but we came in and visited in the morning. She had already filled up her output canister with discharge. And when we returned from the Warf she had filled up another half of a canister. Meema left Friday night on a red-eye, Dylan was sad to see her go. Sat. morning Casey, "Apple" and Grandpa Smith spent the morning together with Dylan before they began their head home to Tucson. Casey and I headed back up to the hospital with Vanessa a bit later. Vanessa spent some time holding Dylan before we took her to the airport to head back to Phoenix. During this visit I let the nurse know that I didn't think the replogle was working correctly, she just kind of chuckled at me. Friday during a visit I noticed that the replogle had no water in it which isn't a good thing, they did put water in it. After we dropped Vanessa off at the airport Casey and Mom went to the local pub to watch the rest of the FSU vs Florida game, I went up to be with Dylan. I walked in and she was curled up asleep with dried black throw up on her forehead, hands, and blanket. I thought I was going to loose it. I told the nurse that she was covered in throw up (same nurse that I told the replogle wasn't working) and she said "oh, lets just change her". So we changed her and the nurse was going to had her off to me when I said, "We never fixed the replogle". She said she didn't know how to so she needed to get another nurse. The replogle drains the goop from Dylan's tummy. It should be constantly moving or clear. Her tube was totally Green and not moving at all. The other nurse came in a noticed how bad of shape it was in and she pulled out the whole line. Dylan then started throwing up EVERYWHERE. I couldn't believe how much throw-up there was. She didn't cry at all, I think that it is because she was so relieved to have all of this junk of her body. I still thought I was going to ninja kick this nurse. What would have happened if I wouldn't have come in? Would Dylan have been covered in dried throw-up for hours? Grrr....Would her replogle have ever started working? Grrr.....The night nurse was one that we love and have had man times, so she took care of everything. I came back that night and spoke with the charge nurse to tell her of my concerns. They understood our concerns and said that they will only place up with high care nurses from here on out. Sunday was a good day, no output from her replogle. Aunt Terri, Uncle Jay, Max and Nadine came up to visit. Dylan was wide awake and happy most of the day. And now we are at Monday! The doctors have chosen to put her replogle to gravity, I think because there was no output yesterday. I think this will be placed back to suction within the next few days, call me a pessimist, but i have seen what has been coming out and the color the past few days. She was grumpy all morning for the nurses and as I went to change her diaper there was a POOPY!!!! My first one!!! Wohoo!!! It looked like bird poop. It was dark green with a little white in it. This was so exciting. And as I was changing it she was still pooping. I think that was why she was crabby. Wouldn't you be if you only pooped once a week? Now that it is out of her system she is happy as a lark! "Mimi" is leaving today for a little while, so she has been holding Dylan most of the morning. All in all not much has been happening. We are in the waiting section of the hospitalization, we are just trying to get Dylan's body to work so that we can feedings started!

Trip to Fisherman's Warf

2007-11-25T18:33:00.000-08:00

Family Pictures

2007-11-25T17:43:00.000-08:00

Great-Grandpa, Cousin Andrew, Great-Uncle Craig, and Dad!

Great-Grandpa, Uncle Craig, Cousin Andrew, "Apple"

My Big Girl Binky!

Me and My Great-Meema

Boy Does She Love Me!!!

And I LOVE her!

Great-Meema, Mommy and ME!

She sings me my goodnight song!

"Big Daddy", Aunt Lauren, and "Mimi" My Beautiful Aunt Lauren

"Mimi" and Tia Vanessa

I love her!

What We are Thankful For!

2007-11-22T14:34:00.000-08:00

We are Thankful for so many things this year. It has been such an overwhelming yet AMAZING year. It started off with the Wedding of our dreams. We couldn't have asked for a more beautiful and special start to the year. We were able to celebrate with our closest friends and family that traveled from both near and far. And those that were not able to make it were there in spirit. And we ended the year with the birth of our daughter. What a way to complete the year. She has been such an amazing addition to our family and we are so thankful that she is on the path to being healthy. This leads us to the next thing that we are thankful for, our friends. Our friends have been such an amazing support throughout the past couple of months. I do not think that we could have made it through the pregnancy without their support. So a special Thank You to Vanessa, Jaime, Rachel, The Flanders, Mo,The Abels, The Martins, The Leggets, The entire JCrew family, Marc, Vickie, The Ierley's, Lauren, Laura, The Milligan's, The Cirell's, Paul, The Encinas', The Plimley's, Mark, Jean, Steve, The Osterhoudts, The Goblets, The Whitney's, The Henderson's, The Hastings, The Kennemer's, Meredith, The Mozur's, The O'Neals, All of the OPA girls, The Sheehey's, The Thalheimer's, The Peterson's, The Hanley's, Miles, Rob, All of the Casey's Navy guys (The drunks in Japan), Sliwo J, Ray-Ray the Mexican, Lt. Srogi, Chief Hazlewood, The Salvagio's, The Goad's, The Luke's, The Weaver's, All of our High School friends that have supported us, The Rochon's, The Garcia's, All the friends from St. Paul's, All of the Motorola Gang, The Banakis', The Weber's, Amanda, Rebecca, KC and anyone else we forgot!
We have had the most support from our family. They have truly been our backbone through this all. My parents have sacrificed so much for us. I feel so fortunate to have a mom and dad love me, my husband and my daughter like they do. From all of the research that they assisted in, to driving me out to California, to going to appointments to me, to helping with the dream babyshower, to the decorating of Dylan's room. They have been an invaluable support. Casey's parents have been so amazing also, they attended appointments with me, came up to Phoenix to help me with house work, listened to me complain, and have just been such a great sense of love. I feel so fortunate to have married into such a great family. My Brothers and Sisters we great in making sure that their pregnant sister was surviving!!! Chris and Amanda were so great with their calls to check up on how things were going. It was so nice to have Amanda to go through this pregnancy with, it made things so much easier. My grandmother, Meema, coming out to see her first great-granddaughter meant more than I can ever express. All of My Aunt's and Uncle's that have called and emailed to check in on us have meant so much. Casey's Grandfather has been grandpa, every great grandbabies dream! All of the Martinsen's, Hilliard's, and Terry's, and Marilyn, thank you for all of your love! The Smith's get a special thank you. Thank you for taking me into your family. Jay, Terri, and Max, I could not have asked for a more loving home to live in for the past few months, thank you for making Dylan and I one of yours. From Feivel, to Joey "the shoe eating bandit", to chocolate chip cookie making, I had so much fun during the hardest time, thank you! Aunt Sandy and Aunt Darlene, thank you for being the best God Mother and Great God Mother that Dylan could ever have. She is such a lucky girl!
We decided a few days ago to have Dylan Baptized today. Becuase we are so thankful for this little Angel we thought that Baptizing her on Thanksgiving Day was only appropriate. This way every year on Thanksgiving we can say and extra prayer for Dylan's amazing fight and recovery!!! So this morning we had a Priest from St. John of God in San Francisco come up and Baptize Dylan. She wore the gown that every grandchild in my family has worn. She had a rough morning, but as soon as the Baptism started she was so alert and scerene. It was such a beautiful ceremony, she was wrapped in a white blanket, had the cutest wooden cross bracelet on and just sat in my lap. Meema was the Proxy for the GodParents, Vanessa, "Mimi", "Apple", Grandpa Smith and Casey were all in attendence. We all made the sign of the cross of her forehead and the ceremony was complete. This has been a great day thus far and we are currently at Jay and Terri's house about to EAT!!!! Then back up to the hospital to spend the night with our little Pixie!

Thank You Everyone and Thank You God!

She is just so beautiful!

2007-11-21T12:00:00.000-08:00

I am learning to suck, but my pacifier is bigger than my head!!

Then I found my fingers when "Mimi" was holding me!

One of my favorite visitors, My "Mimi"

I get lots of love!!

One of my poses from Mommy's Tummy!

Daddy giving me my pacifier to suck on!

Here is my new belly button!!

That's Right! I can smile!!

I am saying my nightly prayers, I just learn quickly!!

Daddy calls me "Sister Dylan" but that is becuase he wants me to join a convent, not because I can fold my hands like this!

Me and My Daddy!

3 Generations Of Mommies Grandpa, "Apple" and Me

Daddy talking to me!

I have his Pirate Eye!

Daddy giving me my pacifier, he does that ALOT!!

The Smith Family!

Grandpa holding me for the first time!

I fell asleep in his arms!

So I am currently sitting here at the hospital watching my little angel sleep. When I walked in this morning she was moved into a BLUE CRIB!!! This is a big deal, it just means that she is a big girl now and she can regulate her own temperature. I also got some more exciting news from our nurse Mel. Dylan had 2 bowel movements between last night at 9 am this morning. The doctors were in doing rounds just as I walked in. I was informed that if her repolgle changes colors or starts to reduce its output today that they will move it to gravity tomorow. It looks like it is a dark lime versus its usual dark green, so lets hope that tomorrow it will be taken out!!! Wohoo!!!

Another Monday!

2007-11-19T17:26:00.000-08:00

Casey and I got to the hospital pretty early this morning. The surgeons had already done rounds which was a bummer! It is nice to be there when the doctors are going around to be able to hear how your child is doing. We sat and starred at her for a while and then it was time for a diaper change and temp check. Guess who didn't change the diaper. That is right ladies and gentlemen, Casey didn't!! So he was on thermometer duty and mommy changed the diaper. Just tinkle, darn! It gets so funny when you pull off that diaper crossing the fingers on one hand just hoping for a little surprise, maybe one of these days! Dyl woke up as we were changing her diaper and she just looks up at you. It is so funny! I HAD to hold her!!! So I assumed my position in the rocking chair and the nurse handed her off to me. She was wide awake the whole time, it was so nice to be able to rock her and have the complete ability to comfort her the entire time. We had eye contact the whole time. She would smile and then blow bubbles and then stick out her tongue and repeat. Don't worry, we captured pictures of it all. I know that probably shocks you! Smile, Bubbles, Tongue, Repeat! Then it was daddy's turn to hold her. We switched places and they just rocked and rocked and rocked. It is so nice to see the 2 of them just connect and just BE.

When I was holding Dylan one on the surgeons came over to speak with me. Poor guy thought my name was Angela and felt so bad when the nurse told him my name was Ashley. I didn't mind, he could have called me Bertha as long as he was giving me information about my daughter. Anywho, the surgeon was coming over to take the drain out of Dylan's belly. He did it while she was in my arms. She has a small white tube coming out of her newly made belly button to drain anything. It was connected by one small stitch to her skin. He snipped that stitch and slid out the drain tube. She didn't even flinch. He said that her swelling still hasn't gone down but that is to be expected since she has so much in her little tiny tummy. I asked him about the hole in her intestine that had been mentioned last week. He told me that the hole was not technically in the intestine but in the mesentary which is a fatty section. He said that they put holes in the mesentary in adults all the time. When I asked him what a hole in the mesentary meant he said that it could lead to escemia or mean poor blood/oxygen flow to the intestines. Since we were told that the intestines appeared dusky in the beginning of the process I now assumed that this hole could be a factor in the poor oxygen flow to the intestines. The surgeon said that this was not a contributing factor as of now. They will keep it in mind if the intestines do not work properly, but as of now it is not a concern to them since the hole could correct itself.

Currently "Mimi", "Great-Meema","Apple" and Grandpa Smith are currently grandbaby sitting. Dylan is very excited to get to spend time with 4 of her favorite people. Casey and I are thouroughly enjoying this time together. Everyone keeps reminding us that we are newly weds, but we have to remind them we are "30 day weds". This time together is so amazing. Just being able to wake up next to eachother and walk down the foggy San Fran Streets together is so perfect. And then to be able to go and see our perfect little daughter is even more than I could ever ask for! Basically life is GRAND!

We got to hold her!

2007-11-18T14:37:00.000-08:00

First Family Picture

Second Family Picture

Happy in Mommy's Arms

Apple, Daddy and Me!!

I woke up for Apple!!

Back to Sleep!

My Daddy!

They unwrapped my burrito

Daddy has the best kiss!

Learning to suck! Me and My Pacifier!

Tucked back in!

What an amazing day yesterday was. Most people take the little parts of having a baby for granted. Being able to see them, being able to hold them, having them poop! All of these things have been such milestones that we will cherish forever. It was so hard having to wait 7 hours after giving birth to be able to see our baby. It has been even harder having to wait almost 2 weeks to be able to hold our daughter for the first time. So it was such a treat to be able to hold our little pixie for the first time yesterday. I had gone to drop my dad off at the airport and dropped Casey off at the hospital to be with Dylan. When I came back the nurse had told me she had offered to let Casey hold the Dylan while I was gone, but he said he better wait until I was back. This made me so happy. I know he was itching(slash nervous) to hold her, but I really wanted to be there for the first time she came out of her bed. So, I got there at 10:00 with Uncle Craig (Great Grandpa and Andrew were somewhere lost in the hospital), and the nurse asked who wanted to hold Dylan first. Of course I really wanted to be first!! Who wouldn't?!?! But, I really wanted Casey to be the first one. Seeing Casey hold his first baby brought tears to everyones eyes. Yes, he had held Madison Martin before, but she was over a year old before he would even think about putting a finger on her for fear of dropping her. So, he was about to hold his first baby, and it was HIS DAUGHTER. The way he held her made you want to giggle. He had her head in on hand and body on the other arm. I don't quite know how to explain it other than awkward. But the way her just starred at this little girl just melted your heart. Most people that are reading this know Casey, and they know how much of a hard ass he can be. But he has been more than I could have ever expected with this little girl. So caring, so loving, so amazing. I know that he is going to protect her every step of her life and that nothing is going to ever harm this little angel if daddy has anything to do with it. And I just knew all of this from that first time he held her and just sat looking at her. I got my turn later, and WOW!!! It was just so nice to spend the day rocking my little girl. She never opened her eyes or even woke up, but that was fine with me. Just being able to have her in my arms was all that I needed. Both grandma's held her by the end of the day, I thought the nurse was going to have to peel her out of their arms.

We went back to the hospital this morning. Dylan's bed had been moved. This is a very scary thing when you walk into the ICN and your child's bed is gone. She had been moved from the West Wing (Surgery/High Care) to the North Wing (Special Care). She was fast asleep when we got there. We have been trying to get her to start sucking since it is not a natural thing for Dylan. We need to start getting her ready to breastfeed. So, we placed the pacifier in her mouth and she sucked away. This too was very exciting. She looked so perfect all wrapped up like a burrito in her bed. It gets very hard to leave her sometimes.

We also spoke with the Neonatologist yesterday. Dr. Shimotake said that Dylan is doing so great right now, but we need to be prepared that this is the time that she will start making steps backwards. This is something we have always been prepared for, we just hoped it would never happen. The next step we are wanting to accomplish is having her Repolgle removed. The Repolgle (pronounced repogel) goes into her stomach and drains all of the junk out. It is currently a very murky dark green bile. We want this to turn clear and as soon as this does it will be removed and they will begin to feed her my breastmilk. As of now there is no changing of colors, but the doctors have said this could take a while. So as of now it is just a waiting game. In the meantime the doctors are weaning her off of the morphine. She was at 30 mikes the 2 days after her surgery, they have been reducing her morphine by 3 mikes every 12 hours, we have her at 13 mikes currently and at 4pm she will be reduced to 10 mikes and after that it will be PRN.

Everything still looks great, thank you for all of the kind words and prayers we have been receiving. We are very sorry if you have called or emailed and we haven't returned your message yet. As soon as we get a moment to catch our breath we will give everyone a call or email. And all of the messages that have been left on the blog are SO appreciated also, it is nice to know that people are reading this! Much love from the new Smith Family!

Pictures of her Full Face!

2007-11-17T15:39:00.001-08:00

Everything is going well today. These are the pictures from yestrerday and my first day with the tape off my face. Today Mommy and Daddy got to hold me for the first time. Everyone keeps asking how much a weigh now. I was born weighing 5.49 lbs and I now weigh 4.875lbs which is totall normal. I will gain weight in about a month after I can tolerate my feedings.
Mommy and Me!!

Happy Girl!

I don't like the flash!

My Billy Idol Haircut!

I wouldn't keep my hands off my lines so the nurses gave me half a syringe to keep my hands busy.

Mommy woudn't stop taking pictures of me!

Today's Update!

2007-11-16T10:11:00.000-08:00

Casey and I just got to the hospital and had such an AMAZING SURPRISE waiting for us. Dylan was taken off of the ventilator. She is breathing on her own!!! She also lost one of the large lines in her hands. They had just pulled out the vent 2 minutes before we walked in and they said she did very well. They heard a little cry out of her, one of the first audible cries! She was all eyes blowing bubbles when we walked into the room. We also heard a small sound come out of her, not a cry, more of a creak. We have been able to see her entire face for the first time. And sorry everyone, she is pretty much the most beautiful baby ever. I know you think your children are the cutest, but ours wins! Hands Down!! We will post pictures in a little bit, but I wanted everyone to know our exciting news. This is one HUGE step in the right direction.

Not much is happening! But that is a good thing!

2007-11-15T11:39:00.000-08:00

Daddy kissing me goodnight!

Daddy's Suprise for Mommy and Me!!

Our little Pixie is quite the happy camper right now. She has all of her organs back in her body. The nurses took all of the IV's out of her head, which meant she got all of the tape taken out also. Last night she got a bath!!! It is really just a sponge bath, but apparently she LOVED it!! The nurse says she has a very high pain tolerance. They prick her foot everynight to take blood and she doesn't even flinch. Casey and I spent a couple hours with her late last night, we talked to her and sang her lullabyes. She just opened up her big eyes and starred at us. It just melts your heart. Everytime we are talking to the nurses they say she is doing great. Everyday they are going to turn down the amount of air they are giving her in her vent and ease her into breathing on her own. And they are going to turn down the amount of Morphine they have her on. She had her Foley removed last night, so she is now tinkeling on her own. Her tummy is still very very tight. We measured it this morning and it hasn't gone down in size (swelling), but it also hasn't gone up, which is even better! Casey took her temperature this morning for the first time, it was very sweet to watch. And I got to change her diaper (just tee-tee in it, the fun stuff won't come for a couple more weeks). I offered the diaper changing duty to Casey, but his response was "Pirates don't change diapers". Wow, I got lucky!!!! He even has a book titled "Pirates don't change diapers" and he shows it to me whenever we talk about diaper changing duty. Soon enough I will break him in! Casey did come home with a suprise for myself and Dylan. I am sure it will come as a real shock to those that know him. The suprise is pictured above!

Surgery is complete

2007-11-14T17:31:00.001-08:00

So Dylan had her closure surgery on Monday! This was very exciting. We got the call from the Surgeons on Sunday night right after we left the hospital. They asked for our consent to preform the surgery, and of course we gave a huge "UMMM YAAA!!!!!". So Monday morning we all got dressed (Casey and I have moved into the Ronald McDonald House) and left for the hospital. We got to the hospital and hung out with our little Pixie (that is what the nurses call her). She was a very unhappy camper this morning. The nurses had her hands pinned down becuase she plays with the cords too much. I am convinced that she knew that her intestines, which have been her play toys for the past 9 months, were now being taken away from her. She had this scowel on her face as I would talk to her and stroke her hand, she is never like this. Then she started to cry, but it isn't really a cry. She in intibated, so it is this silent cry, which I think might be worse than a real cry. I couldn't stand seeing her like this, so I ran out to the waitingroom to get Casey. When I came back into the room Dylan was pulling out her repogle(food drain) and ventilator out of her mouth when her right hand and pulling on her intestines with her left hand. The nurses saw this and gave her a bunch of drugs which calmed her down.
The doctors took her into surgery about an hour later. It took about 2 hours and all went well. They wheeled her back up to the ICN where we went and visited her. They had her in a medical comma. She has been coming in and out of it these past couple of days and all is going great. They will try and ween her off of the assisted breathing and repogle this week and hopefully by the end of the week we should be able to hold her. Thanks so much for all of your support and prayers.
Casey and Ashley

No more Outtestines, now just Intestines!

2007-11-14T15:59:00.000-08:00

Mom and Dad escorting me to Surgery!

Aunt Lauren putting lotion on my feet.

"Apple" and I having a talk!

Back from Surgery, I was so drugged up that I couldn't move!

Great-Meema and Mimi holding my hand!

Peeking out at dad under my hat on my way to surgery !

Back from Surgery, I have a brand new belly button! Doctors said my stomach is VERY tight, the swelling should go down in a couple of days!

Passed out after the surgery! Doctors are trying to get my breathing stabilized.

Shot from above of me after my surgery! The bald spot on my head is from IV's they had to place in my head.

Just another shot of my closed up tummy!

Random Pictures

2007-11-14T15:39:00.000-08:00

Someone should have told me my Dad was a Pirate!

And a Milk Man?

My feet are longer than Mommy's pointer finger.

Mommy refused to leave the hospital!! She had too much fun there!!

Mommy and Daddy's new home away from home while I recover.
Ronald McDonald House San Fran.

The AMAZING Welcome Home Shower that Auntie Patsy threw for Mommy and Daddy. Mommy really needed this! She was sad leaving me.

The beautiful flowers that GodMother Sandy and GreatGodMother Darlene sent me. You can see Alcatraz from the view in Mommy's room!

Pictures of Dylan with her Silo

2007-11-14T15:08:00.000-08:00

The room was bright!

The doctors pushed more in this morning!

Where did they go?

My hand wrapped around mommy's finger tip.

Hello Mommy!

Fast asleep the night before my surgery, last night with my silo.

Sleeping like a Pixie!

"Apple", Mommy and "Mimi" the night before the surgery.

My GIANT feet in Mommy's hand.

"Big Daddy" and "Mimi" visiting the night before the surgery

Close up of my Silo insert, doctors had to make my hole a little bigger to fit in my stomach.

This is me and the last of my intestines!! I am going to miss them!

Close up of the base of my silo. These are the last of my intestines before my surgery in the a.m.

The tie up at the very top is where my intestines we are just 4 days before. Its a miracle!

How she got here!

2007-11-09T07:01:00.000-08:00

Sorry it took so long for me to write this. Things have been a little crazy these past couple of days, plus I needed my drugs to wear off so that I could write complete legible sentences.

Anywho, here is how this little girl came into this world......Monday I had all of my prenatal appointments. Mom got into town on Saturday, so she was able to go with me. My first appointment was an Ultrasound, they just wanted to check the blood flow of Dylan's intestines etc. When the sonographer was looking at her stomach she noticed that one of Dylan's loops of bowel was extremely enlarged. She had actually used the phrase " I have never seen a dialted bowel that big before". She was also having a really hard time finding Dylan's stomach. Normally babies stomachs are filled with amniotic fluid therefore there is not an issue finding them on a ultrasound. But, they thought since her bowel was so enlarged that she could have no room to drink anymore amniotic fluid hence they could not find her stomach becuase it was empty. She continued to take more ultrasound pictures and then let me get dressed and hussle to my appointment with Dr. Hopkins.

Mom and I got to Dr. Hopkins appointment and waited for the meeting. I in the meantime had to tinkle SO BAD and there bathrooms might be smaller than airplane toilets. Why would you do such a thing? Try and squeeze pregnant woman into a airplane bathroom? That is just cruel. Plus when you are pregnant they require a urine sample at every appointment. I think they just think it is funny to make women back into a bathroom, have to shimmy around a toilet to close the door, do their business and repeat backwards. I must admit, it was funny. I think there was a lot of falling into walls and banging around. Dr. Hopkins then called us in. We sat there for a minute and then I could hear her talking on the phone in the other room. Mom and I sat very quietly trying to listen to the conversation. I then looked and mom and said "something is not right.". Dr. Hopkins came in a reviewed the Ultrasound with us. She told us that she had consulted with many other doctors in the Fetal Treatment Center about the U/S findings. She spoke with a radiologist, surgeons, neonate, peditrician, etc. She inforned us that this baby needed to come out. But, they were trying to decide if it was best for me to be induced that moment, or was I to take steroids (betamethazone) for 2 days to ensure that Dylan's lungs were developed and then to enduce at that point. I sat and cried. Not because of Dylan. I have nevcer doubted that Dylan was going to be okay, that is why we were in Calofornia. These doctors knew what they were doing and I had no doubt she would be okay. But I broke becuase Casey wasn't here. He wasn't supposed to fly in until Friday and this was Monday. I tried getting ahold of his to let him know what was going on, but my cell phone wouldn't call international. So I called my dad in tears to get him home. I was 35 weeks at his point, babies lungs are the last thing to develop and there is a chance that her lungs were not completely developed. Since she has to undergo so many surgeries we wanted to rule out lung failure. After all doctors weighed in I was sent to triage to have the baby monitored and it was decided that I was going to be induced and not wait for the BetaMethazone. Labor could take 2 plus days which would put her lungs into 36weeks and should be mature at that point. Anywho, the hospital was full at this point. And I sure wasn't prepared to stay there and have a baby, I didn't have a bag or anything. Plus, my legs were in desperate need of shaving!!! Especialyl since I hadn't seem my husband in how many months. If he would have seen my legs like that he would have been very tempted to board a plane right back to Tokyo.

She is here!!!!

2007-11-08T17:52:00.000-08:00

Miss Dylan Michelle Smith is here!!! I will write more later, I just wanted to be able to put some pictures up! Some of them are a little hard to look at, so I must warn you. But all in all our little girl is going SO WELL!!! The doctors put half of her intestines in today which was very exciting.

New Pictures

2007-11-02T22:30:00.000-07:00

It was an exhausting day of being beautiful

Smile!!!

They keep my hands warm!

We aren't sure whose nose this is!!

Last Time We Saw Daddy

2007-11-02T22:24:00.000-07:00

This was a picture of the last time that Dylan and I saw Casey. It was early May, no belly at all. We are counting down the days (6.5) until daddy gets to come home to be with his family. I think he will be in shock when he see's that his wife has a little belly and in that belly is his daughter. I can't wait for him to be able to feel her kick and see her move my entire belly. Only days now!!!! I swear they are going to go by SO SLOW!!!

EARTHQUAKE!!!!

2007-10-30T21:41:00.000-07:00

It is Tuesday night and Dylan and I survived our first Earthquake. I do not recommend it for fellow pregnant women. We had just finished eating dinner and making cookies and a very FULL ashley was sitting on the couch talking with Casey's mom. When all of the sudden the floor started to shake. It took me a couple of seconds to figure out what was going on. But, the shaking bookcases things falling off the shelves was kind of a give away. I then jumped up and started to run outside. Then I looked behind me and realized that the family was running the other way. So, prego can move faster than she thought. I planted my feet and hightailed it towards everyone else. I figured if they were all running one way, they knew somthing I didn't know. As I ran towards the rest of the family it was like Jumanjii. The cats, dogs and I swear at one point a rhino ran through my legs and out the garage doggy door. Thank goodness Jake the snake decided to stay in his cage. As I ran to everyone they said to get in a doorway. Duh!!!! Pretty sure that I saw that on a vintage Saved by The Bell episode. So, into the doorway I went, while still talking to Cheryl on the phone. When all was said and done the earthquake was a 5.6 on the Rhicter scale, it lasted 12 seconds and the epicenter was 3 miles from the house. Max has said that the aftershocks are supposed to be stronger, I sure hope he was wrong! I don't know if my belly can take this! Dylan has been going crazy since this all started.

On a lighter note, today was another NST. Everything looked good again!! Fluids were high, heartbeat was strong, activity was consistent. YAYYY!!!!! I made good friends with a woman that is a Peds ICU nurse at the hospital. She is due the first week of december, so my guess is we will cross paths again in the next couple of weeks.

So I am sitting here curled up on the couch watching Boston Legal with a little girl in my tummy with Hiccups. She has been pretty quiet all day, but now that there is all of this excitement going on, she wants to be right in the middle of it. I sure hope she doesn't decide to come out and see what it going on!! She needs to stay in a little while longer.

Thursday is a 4D Ultrasound and Friday is back to the hospital for testing and then off to Jenny's house to have a play date with her and Taylor!!! And then Sat. Mimi (my mom) comes in. Oh, and we have decided that Cheryl(Casey's mom) is going to be known as "Apple" because she will be Granny Smith. So my mom is "Mimi", my dad wants to be "Big Daddy"(don't ask), Casey's mom will be "Apple" and Casey's dad will be "Grandpa Smith".

We hope that everyone is doing well and that everyone has a safe Halloween! Much love, ash and dyl!

Dylan's Nursery

2007-10-30T18:05:00.000-07:00

Above is a quick snapshot of Miss Dylan's Sanctuary. The changing table arrived hours before we left for San Francisco. The room was just thrown together, it looks much better now! The Grandfather's spent a good amount of time helping place the beautiful "D"s that Dylan's Aunties made for her. Each Aunt made a "D" for Dylan at the shower, they are all signed and are something that she can keep forever.

T minus 18

2007-10-28T00:04:00.000-07:00

Today Miss Dylan and I had a fun outing. We got to go to breakfast with Great Grandma Marilyn. We had such a delightful breakfast. This was the first time that have ever been able to spend with GGMarilyn. And what a doll she is!! Dylan is so lucky to have all of these amazing people in her life. Aunt Terri, Uncle Jay, and Max joined me for this breakfast. I think we all had the same great pancake breakfast. Yummy!!! Then it was off to finish our Halloween costumes for the Halloween party we were to attend tonight. We went to target, then to the grocery store to get things for our potluck dishes. I started to feel very faint while shopping. I was very hesitant to walk down the grocery store aisle by myself for fear that I was not going to be able to make it back to the cart by myself. After chugging a Gatorade and eating a piece of chocolate I felt much better. The Halloween party was fun. Aunt Terri went as a punk rocker, Uncle Jay as a scary old man, Max as just scary, Nadine as Raggedy Ann, and myself as Pregnant Britney Spears fully adorned with flour on my nose (her little habit), Starbucks cup fake cigarette, and baby doll that was dropped numerously throughout the night. This long night out sure kicked my butt the next day. I think I have finally recovered!!

For All the Moms

2007-10-24T17:05:00.000-07:00

A newborn's conversation with God:

A baby asked God, "They tell me you are sending me to earth tomorrow, but how am I going to live there being so small and helpless?"
God said, "Your angel will be waiting for you and will take care of you."
The child further inquired, "But tell me, here in heaven I don't have to do anything but sing and smile to be happy."
God said, "Your angel will sing for you and will also smile for you. And you will feel your angel's love and be very happy."
Again the child asked, "And how am I going to be able to understand and when people talk to me if I don't know the language?"
God said, "Your angel will tell you the most beautiful and sweet words you will ever hear, and with much patience and care your angel will teach you how to speak."
"And what am I going to do when I want to talk to you?"
God said, "Your angel will place your hands together and will teach you how to pray."
"Who will protect me?"
God said, "Your angel will defend you even if it means risking its life."
"But I will always be sad because I will not see you anymore."
God said, "Your angel will always talk to you about Me and will teach you the way to come back to Me, even though I will always be next to you."
At that moment there was much peace in Heaven, but voices from Earth could be heard and the child hurriedly asked, "God, if I am to leave now, please tell me my angel's name."
God said, You will simply call her, "Mom."

Sent from Aunt Terri

Just another Wednesday!! Only 2 more left!!

2007-10-24T15:43:00.000-07:00

Not much to report today. I finally heard back from the Fetal Treatment Center this morning. They said that everything looked good so they were not going to schedule another doctor clinic appointment and Ultrasound for a week and a half. They said that Little Miss Dylan is flourishing and now it is just having my body hold up for 2.5 more weeks. They did up my NST's to 2 times a week. So I got back again on Friday and that should be able to pick up if I I am having contractions. Yesterday I was having some pain that I had not had before. I woke up with pain in my lower back, it would kind of come and go during the day. And I also had some pain in my lower abdomen. Since the Sonographer told me I was having contractions on Monday I thought maybe I was having contractions. I called my sister-in-law Amanda who just had her baby 4 days ago and asked her for some advice. I thought maybe this was Braxton Hicks, she said she thought it could be real contractions. I tried altering my movement because that is supposed to differentiate false labor from true labor. My altering movements didn't change anything. I decided to lay down for the night and see if it went away. And I never woke up during the night, besides to tinkle. And this morning I feel fine. So, I am not quite sure what I was feeling. But I think it is all good.

Monday's Appointment

2007-10-23T10:33:00.000-07:00

So yesterday was my new schedule of Monday appointments at UCSF. Originally I had scheduled them for 10:30 so that I didn't catch wretched traffic when driving in from San Jose. But, I got a phone call that I had to be there by 8:15. So, up at 5 it was!!! I was on the road by 6 since I figured it would take 2 hours with traffic. IT DIDN'T!!! I was there by 7.
I had my NST at 8:15 (well it was supposed to be at 8:15, I didn't go in until 8:45). Everything looked great. They checked my fluids and they were up to a 17.7!! Can you believe that? Less than two weeks I was at 6.1!! Then they hooked me up to the machine and just monitored Miss Dylan's heart, her baseline (what her heart beats at consistently) was its typical 139bpm. She was fast asleep (mommy hadn't eaten yet), so they couldn't get the accelerations in her heartbeat that they need. The Nurse brought me a piece of chocolate, I wasn't sure what it was for. She asked me to eat it, and so I did. About 30 seconds later Dylan began to go crazy. I thought she was going to break through my stomach and jump out. She was a little incredible hulk in there. The only problem with this was SHE DIDNT STOP!!! The way it is supposed to work is a)Dylan establishes her baseline (139bpm), b)her heart accelerates to 160+bpm c) her heart decelerates back to 139ish-bpm. d)repeat. Instead Dylan established her baseline at 139bpm then when she got the chocolate (mom isn't a chocolate eater) she went up into the 175+range (it has never been that high) and then established a new baseline at 160bpm. The nurses didn't know what to do. She just was not gonna lower her heart, she was literally HIGH off of the chocolate. Lesson we have learned from this: Ashley cannot give Dylan chocolate as a child if Ashley wants to stay sane. The nurses then did a BPP(?) and said they could make a viable case that Dylan was good and healthy so they let me run (and when I say run, I mean run) to my next appointment.
I zipped up my jeans (oh yes ladies and gentleman, I am still in my pre-pregnancy jeans, knock on wood), ran up the stairs, and ran down the street to get to my next appointment. My appointment wasn't until 9:30, but they wanted me there at 9:00. I ran in at 9:20. I sat and sat and sat, and then they got me in at 10:00. I needed to be at my next appointment at 10:30 and if I missed my 10:30 then I was in TROUBLE. The nurses brought me back, we talked about my health history, how I was feeling etc. The doctor was running behind so the nurses wanted to know if I would like a Flu Shot. Who knew you could have a flu shot when you were pregnant? I sure didn't. Apparently there is a killed (inactivated)virus flu shot that pregnancy women can receive. So, I got my flu shot! Then the doctor came in (Dr.Hopkins) and we talked a bit, she wanted to know how I was feeling and answer and questions I had. Dr. Hopkins informed me that we were not going to do the amniocentesis on the 14th before delivery. I told her about my right leg pain and she was concerned that I could have a blood clot building up in my right leg. She seemed to think that my pain is very uncommon ( I figured it was normal). She wanted me to have dopplers done by the sonographer on my leg to make sure there was no clotting. We finished up at 10:27, I switched into my running shoes and took off to the Ultrasound lab.
I made it at 10:34, just in time!! I had to wait another 30 minutes or this appointment (everyone was running behind today, maybe because it was a Monday). Dan was my sonographer, it was very odd having a male. I am not sure why, but it was just very different, not bad, just different. He checked Dylan's bowels, amniotic fluid and all the normal stuff. He didn't measure Dylan this time, which I thought they were going to, so we don't know how much she weighs this time. So sad!! He said he thought everything looked okay. They will review everything today in the department meeting and let me know how Dylan looks this afternoon. I think everything is great! I did have 3 contractions during my Ultrasound, I didn't know I was even having them, the sonographer told me I was having them. Other than that I think that we are still on track for the 14th! Dan also traced my vein through my leg to make sure that there was not a clot. He said he didn't see anything out of the normal, but the radiologist would look at it today and let me know if there is anything questionable.
So all in all it was a very uneventful Monday, thank goodness!!! I will let you guys know as soon as I hear ANYTHING!!! 16 days until daddy comes home!!!

Just Plain Randomness

2007-10-21T18:08:00.000-07:00

Above is a picture from the AMAZING babyshower that was thrown for Miss Dylan a couple of weeks ago. I feel so blessed to have such amazing friends and family. It was the most beautiful, pink, girly, loving afternoon that I could have ever asked for. We had an afternoon tea at a new tea room in gilbert called Tea Dreams. All of the guests got to dine on finger sandwiches, scones, the tea of their choice and my favorite COSTCO CAKE (pictured above)!! All of Dylan's Auntie's then decorated wooden "D's" with pink and green paint and jewels. They are now hanging above her changing table waiting for her to come home. Thank you again to all of my friends and family that sent gifts for this little angel. I don't know what we would have done without everyone's toughtfulness. I have found myself pacing around Dylan's room almost in tears feeling like I have forgotten something, but then I remember all of the amazing women that I have behind me making sure that I am completely equipped for this little girls arrival.

In more exciting news...Dylan has a cousin!!!! Ms. Bailey Lou Smith (Casey's Brother Chris and Wife Amanda) was born at 7:30 on yesterday. She was 6lbs 14oz and 20.5 inches long. I can't wait to make a trip out to ABQ to meet this new little bundle of joy. Grandpa and Grandma Smith are currently out visiting their first grandbaby! And in less than a month they will have number 2!!

Now on to my complaints. When I sat down today to write this I took a pole of what I should write about. Uncle Jay and Aunt Terri suggested that I write about my painful leg that they hear so much about. So, here you go....MY LEG HURTS!!!! Not both legs, just my right leg. I pretty much hate my right leg right now. I have had a great pregnancy! Nothing to really complain about, but this darn leg is really starting to annoy me. When I roll over in bed I wake up in excruciating pain. When I have been sitting (couch, car, you name it) and go to get up to walk, I almost fall. Dad and I went to the San Jose Flea markets yesterday (that's just what we do, 6am on Sat. equals flea market), I was so proud of myself, I made it through the first flea market no problem. But by the time we got to the second one my hands a feet were completely swollen (might have has something to do with my sausage biscuit from McDonald's for breakfast) and I couldn't walk. I thought I would be funny (also not wanting my dad to know how much pain I was in) and race Dad back to the car. This was the saddest moment yet. It was so special, I couldn't run, it wasn't even a run. It was a ghetto grandma hobble, all I was missing was a walker. So at tomorrow's appointment it is on the top of my list to figure out what this is. I am sure that it is just something that could happen during pregnancy, but I would like to know if there is a way to relieve it. I try and stretch and keep my leg elevated. But nothing seems to help. On another complaint, I have gotten heart burn these past couple of days. I know this is common too, it is just such a weird feeling. And lastly, since Miss Dylan has grown so much in these past 3 weeks, she has doubled in size, I have beautiful stretch marks to prove it. I can't tell you how nice it is to know that the reason I have these "battlewounds" is because my little girl is getting big and strong.

So tomorrow is a big day at the doctors. I go into San Fran to have my weekly tests run as well as meet with the doctors. Let's pray for more good news!!!

Growing Belly

2007-10-19T12:24:00.000-07:00

This is a picture of my belly at 32 weeks. Miss Dylan was breech up until this day. I was starting to panic because all of the research that I did concluded that after 32 weeks the baby is usually in its delivery position. I had a hard time fathoming that a little girl that has been living with her head up for 32 weeks would now just decide to suddenly want her head down. I did some research on how to get her to into cephalic position (head down). Yvonne, our childbirth prep instructor, has let us know that she was recently reading a medical journal that said that breech babies will follow the sound of music and turn their body around. She had not had anyone do it before. I gladly volunteered to be the test subject. That night with CD player in hand I went and found the Baby Professor CD that the grandma's got Dylan. I laid down and put the headphones very very low on my tummy and watched magic happen. I could watch my stomach roll as Dylan followed Flight of the Bumble Bee down to the bottom of my tummy. And sure enough 2 days later we went to have an UltraSound and the Sonographer said "she is head down" and I let out a giant "WOHOOOOO!!!!!". It worked!!! And still to this day little Miss has her head down!

We Now Call the Bay Area Home

2007-10-18T10:18:00.000-07:00

Sorry it has been such a long time since the last post. The Internet at the Phoenix house has been broken and since I knew I was leaving I never got around to having it fixed. Anywho..... We are in California. We were not supposed to come up until the 20th, but things took a bit of a turn and the Doctors suggested we get up here as soon as we could. So Dad flew in last Thursday to Phoenix, I had the best going away dinner on Friday and we got in the car on Sat. to make our trek to the Bay Area. We got here on Sunday. I couldn't ask for a better place to stay. Casey's Aunt Terri and Uncle Jay have opened their home to a giant chocolate chip cookie making lots of sleeping pregnant woman. It has been such a blessing to be here and to know that I am among family.
I am sure that you want to know what made the doctors want me out here so soon, so before I forget I will digress. They measure little Dylan every two weeks or so to make sure that she is growing like she should be. The do an ultrasound in which they take a measurement of her femur(thigh bone), head, and abdominal cavity. IUGR (Interutirine Growth Retardation) is a common occurrence in babies with Gastroschisis. This means that the baby does not grow like they should partially because you absorb nutrients through your intestines and her intestines are not in normal working order. If IUGR sets in the surgeons usually want to get the baby out so that they can care for the baby and get her to grow. So.....at a recent Ultrasound in Phoenix we were informed that Dylan was in the 7th percentile. This means that 93% of babies are bigger than her. This also means that she has IUGR. The team in San Fran was concerned about this and asked for a copy of the Ultrasound. When they assessed the report(they know how to recalculate the numbers to not include the abdominal measurement because it is not an accurate measurement since it is missing organs) they concluded that Dylan was actually in the mid 20's as far as percentile. Twice a week I was having NST's (Non stress tests) done. During this I am sitting in a beautiful leather chair at the hospital for about an hour! They strap 2 bands to my tummy. One monitors my contractions or lack there of. And the other one monitors Dylan's heart beat. They want to make sure that her heart beat accelerates without any abnormalities. These tests have all come back beautiful. Literally beautiful, the doctor came in a told the doctor to take me off the monitor because everything was "BEAUTIFUL". The last test that I have run is an AFI which is an Amniotic Fluid Index. They do an Ultrasound in which they measure they 4 pockets of amniotic fluid in my belly. For those of you that don't know this, Amniotic fluid is the liquid that the babies live in, and it is also baby pee. An AFI level of less than 8 is not good and could mean the baby needs to come out ASAP. My AFI on October 8th was a 6.2%. As soon as the team in San Fran saw my AFI at 6.2% in combination with the Dylan's growth on the Ultrasound they suggested that it was in Dylan's best interest if I could get out to San Fran as soon as possible. So that is what we did.
Monday morning I had a meeting with the team at UCSF. My first appointment was a Ultrasound. After all of their measurements they said that Miss Dylan is 3lbs 15oz, so just shy of 4 lbs. This number is with a rough estimate of her intestines. They also said that my amniotic fluids came in at a 12.1%. WOHOOOO!!!!! That was cause to make chocolate chip cookies (not that I need much of a reason to make chocolate chip cookies these days). They also did an NST. The usually stubborn Dylan was very good and cooperative and accelerated her heart all by herself. Sometimes I think she is a mexican jumping bean in my tummy. She just hops all around in there. I was going to have to come back in on Thursday to meet with the Perinate Team. But I got a call on Tuesday saying that everything looked to good that they don't want to see me until Monday. I think that is the best news that we have gotten in a long time. So Monday I will be waking up at 3:15 to be at the hospital in time for all of my appointments. I can't wait for more great news.
And speaking of great news. I got Casey's plane ticket home. As of now he will be home on November 9th, just 4 days before his little girl will be here. We cannot wait to see him!!! I can't believe that it has been this long or that we are less than 30 days from having a daughter. The days are counting down, and I promise to to write more. We love you all and thank you for all of your support!

Getting Bigger!

2007-09-27T14:26:00.000-07:00

Details of Dylan's Big Day

2007-09-03T20:30:00.000-07:00

Another commonly asked question is : Will Dylan to straight into surgery?

The answer to this is: Your Guess is as good as ours!

The way it looks is that Dylan will not go directly into surgery. I will be laboring in the beautiful "Golden Gate Bridge View Room", then when I am close to delivering I will be moved into an OR. The reason I will be moved into an OR is because it is such a sterile environment and Dylan has organs outside of her body therefore she needs such an environment. After she is delivered they will pass her through what looks like a drive through window. On the other side of this window is a team of doctors and surgeons in another sterile environment. They will immediately place Dylan into a bowel bag. A bowel bag is a plastic bag (the same kind that they use on adults in the ER) that Dylan will literally be placed in. It will got up to her armpits and then kind of wrap it around her, this is to ensure that her organs stay moist and that they stay sterile. The nurses will clean Dylan up while the pediatric cardiology team assess her heart (every time they check it they say it is great, but they just want to be SURE), the pediatric surgery team will assess her intestines and general state in order to game plan their next moves, and the neonate team will be getting her into her isolette and move her into the NICU. At this point Casey and the grandparents will be leaving and going with Dylan to the NICU. I will be finishing labor in the OR.
If Dylan just had a few loops of her bowel out then she could go straight into surgery and they could do what is called an "enclosure surgery". They would assess that bowels to make sure that there is no atresia (endings, deadspots) and then insert the bowels into the body and sew her up. The baby would then be medically paralyzed in order to make sure she didn't move. Adults breathe with our lungs and our chest go in and out, whereas a baby breathes with their diaphragm going in and out of their belly. If she now has organs in there that she is not used to then she could squirm and be in pain or possibly stop breathing.
The most likely scenario is that she will not go into surgery for two weeks. From our last couple of Ultrasounds it looks like all of her large and small intestines are out of her body, as well as her liver. Her little body was not made with an empty whole to place all of these organs. Therefore the surgeons have to make room for her organs. They will place all of her external organs into a plastic bag that is known as a SILO. The only way that I can explain it is as a cake icing tube. They will place her organs in this and then a spring loaded piece is inserted into her opening. The bag is then suspended above her body. Gravity then does the rest. The nurses could twist down the bag a little everyday in order to get more to go into her body. This allows gravity to just create space for her organs. The doctors will then preform the surgery closing up her abdominal cavity.
If Dylan's intestines come out black that means that parts of them or all of them have died. She will then go into surgery very quickly. But during my current Ultrasounds they have detected great blood flow through the intestines which indicates that nothing has died. She could also have to go into surgery right away if her intestines stop at a certain point. As you know our intestines loop around and loop around, but if she has atresia this could mean that is just stops looping.
We are hoping that Dylan will not need this last surgery that I discussed. But you just never know!

What it feels like to be pregnant!

2007-09-02T20:27:00.000-07:00

Everyone wants to know what I feel like being pregnant. I think the following clip sums it all up in a matter of seconds!

http://www.youtube.com/watch?v=Ms3QdGIzltU

Enjoy!

To "C", Or Not to "C": That Is The Question

2007-09-01T23:10:00.000-07:00

One of the most common questions that I get asked when people hear of Miss Dylan's Gastroschisis is " You will have a C-Section, right?". So, I thought that would be one of the first topics that I addressed in the long list of questions that I am asked. The answer is "No!". Dylan will be born naturally. Or at least that is the plan. My initial thought was that she would have to be delivered by Cesarean section. How could she be delivered any other way with her intestines like they are? But after talking to many doctors and doing my own research I have found out that C-Section is not the answer. According to UCSF (where Dylan will be born), a premiere research hospital, there is no outcome difference of babies born via c-section versus vaginal birth. And because it is safer for the mother's to have a vaginal delivery not only during this pregnancy but also in future pregnancies they advocate for a natural delivery if at all possible.
After meeting with the Neonatologist in Phoenix I learned USC pediatric surgical and obstetric group differs with this opinion and advocate for cesarean at 35-36 weeks. Other obstetrical or pediatric surgical literature or practitioners do not support this approach (that of cesarean). UCSF advocates for induction of vaginal delivery at 36-37 weeks. The plan is to induce me at 37w1d. If all goes well I will progress in a safe and steady amount of time and Dylan will come naturally. I will be on close monitoring throughout the labor and if for some reason Dylan gets distressed and needs immediate delivery we will then proceed with a c-section. I will be administered an epidural fairly early in the delivery and they will up the dosage if c-section is required. My goal is to deliver Dylan naturally in a fairly quick, low pain labor. But, I also want a million dollars, so we will see what happens! I will labor in one room surrounded by family (at least the grandmothers and husband), as as labor progresses I will be moved into a sterile OR/Delivery Room for the actual birth. Dylan will not go in to her surgery right away, but because her organs will be outside of her body we want to make sure she is delivered in as "clean" of an environment as possible. I will go into more detail of Dylan and her surgery in an upcoming blog. I feel like I am overwhelming people with information.

I do want to take a minute to thank everyone that has sent me an email about the blog. I really appreciate all of the kind words that have been expressed. Everyone that reads this has a special place in My Family's heart. Thank you for taking your time to read this and take interest in our daughter's fight. She is such a blessed little girl to have so many people praying for her and already loving her before she has even entered this world. I cannot wait to tell her that the reason she recovered in such a record time was because of all of the love she had from so many people. I just don't feel like I could ever say "Thank You" enough. Please know that Casey, Dylan and I appreciate it more than you will ever know. THANK YOU for being a part of our new family and THANK YOU for being a catalyst in our daughters survival.

A Poem from Daddy

2007-08-31T12:07:00.000-07:00

They Cannot Take My Love Away From Me

No Matter How Many Years I Sail Before The Mast

I Keep My Love Tightly Within My Heart

I Pray These Years Unfold Swift & Fast

Welcome Sweet Dylan To The World

I Will Stand Over You To Nurture & Protect

I Await Your Arrival With Bated Breath

Your Future, Life & Love, In Anticipation I Reflect

- Casey Smith

Getting Daddy Home!

2007-08-30T22:06:00.000-07:00

Our Sailor!

Casey being gone has probably been the hardest part of the pregnancy. It was hard when this was a perfectly normal pregnancy, but being a high risk pregnancy has made it even harder. Laying in bed at night feeling Dylan do flips in my stomach is such an amazing feeling, and I only wish that Casey was here to be able to experience it with us. We are so fortunate to have such great friends and family surrounding us that are willing to step in. But nothing compares to Casey. I just wish that he could be at the Ultrasound Appointments to witness his daughter sucking her thumb in my tummy. Or being sassy (just like her mommy) and kicking the Doppler away when the Sonographer places it on my stomach. I just wish that we could sit it front of the TV, cuddled up on the couch at night, and Casey could have his hand on my belly as I drink a glass of ice water and Dylan starts to have a party in mommy's tummy.

My biggest journey in this pregnancy next to making sure that Dylan gets the best care possible has been to get her Daddy home for her birth. And let me tell you Ladies and Gentlemen, this has been quite a mission. He was originally going to be home for her due date (December 4th), his boat would beach days before and then he would board a plane home. But, with her due date being moved up 4 weeks I was determined to get him home for that. With an 18% mortality rate nationally, I am going to do EVERYTHING in my power to make sure that he is home in case something happens. The quest started the Monday after the Ultrasound that detected the Gastroschisis.

Dr. Mills had informed us that the Red Cross would be more than willing to help us get Casey home. He said that all I would need was a letter from my OB stating what Dylan's condition was. I made an appointment for that upcoming Wednesday. After meeting with the OB, she had said that she would help in writing a letter. It took over a week to get the letter and it was POOP!!!! All it said was: Casey and Ashley's baby had gastroschisis which was an abdominal wall defect, the baby would have a prolonged hospital stay, both mother and baby are fine, but mother is under extreme emotional distress and requests her husband at the birth. Really?!?! I am stressed? How Dare I?!?! Who wouldn't be stressed having their baby with no family close, no husband and a birth defect? The doctor's office was un-willing to alter the letter stating that they are not the babies doctor and do not know what the babies condition will be when she is born. All I needed was a letter stating the mortality rate of gastroschisis is "x", gastroschisis is "x", the baby will be in the hospital for "x" amount of time, the average birth is between "x" week and "y" week. But they refused. I called the Red Cross to have them help me. They said not a problem, they would help. Then an hour later I got a phone call from the stating that because Casey was not in Iraq or Kuwait they were unable to help due to new guideline changes. Is there any water in Kuwait or Iraq? I think not! I then met with a surgeon who stated that they could not write the letter for me because they were not my doctor, they were Dylan's and Dylan wasn't born yet. Agghhhh!!!! Will someone please make up their mind?!?!? I then called the OB's office AGAIN begging and pleading to help me. They then set me up with a neonatologist named Dr. Watterkotte. I was so prepared to be frustrated again. Prepared for another DEAD END!! Much to my amazement this was one of the best meetings that I had. I met Dr. Watterkotte in the NICU at Banner Desert at 7pm one night. He sat me down and went over EVERYTHING with me about gastroschisis. I learned all about the medical paralysis that they babies will be under for about a week after they are born, all the way to the first fecal movement the baby will have. All of this was such a relief to hear. Just to have someone sit down with me and explain what my baby girl had and what he journey would be was so nice. I asked Dr. Wotterkotte if he would please write a letter to the Navy so that I could get Casey home. Without hesitation he obliged. I received the letter in the mail early the next week. I couldn't have asked for a more eloquently written letter. He covered almost everything. From the delivery methods to mortality to surgery details. It was all there! The only thing it was missing was the fact that I will not go full term. Which is one of the most important parts or else the Navy will send Casey home on my due date.

I forwarded Casey the letters that I had. The sucky one fr0m the OB, the amazing one from the Neonatologist. The last mission was to set a date and get the surgeon to write a letter. This was accomplished on Tuesday! Wohoooo!!!! And this too was forwarded to Casey to give to the Navy.
I also recontacted the Red Cross and forwarded them ALL of the letters that I have gathered. They then contacted Dr. Watterkotte and took a statement from him pertaining to my due date and then the Red Cross sent a message to the U.S.S KittyHawk to inform them of the Smith Family Situation in the U.S.

So far so good. This has been hard trying to get the Navy the CORRECT things to allow them to get Casey home. Whenever I get an email from Casey he is trying his hardest to get home for Dylan. He says that his command is being very helpful right now, which is so great to hear. I know that Casey is having a very hard time not being here and the second that the Navy tells us he can be home in time there will be such a weight lifted off of our shoulders. So PLEASE, keep praying that the Navy will allow Casey to return home to his family during this crucial time. I have all the faith in the world that Dylan will be fine. We just NEED Casey to be here with us, just as much as he NEEDS to be here.

My emotions seem to run a little thin when people ask me about Casey being home for Dylan's birth. But I just have to have faith! Please keep us in your nightly prayers.

A Day to be born!

2007-08-30T13:21:00.000-07:00

(Those are her Giant Feet)

After much research and consideration on where to seek care for Dylan and her condition we came to a conclusion. Even though this is a birth defect that is happening more often than in the past, it is still a rare anomaly especially in Arizona. After contacting the Department of Health and Labor statistics I was able to track the number of cases in Arizona in the past couple of years. I also contacted all of the local hospitals and pediatric surgery teams to get the numbers to cases that they have treated. I was not very impressed with the numbers. Most hospitals see less than 10 cases in a year on a high year. And we had to consider that one surgeon is not preforming all of the surgeries. Also, the facilities in Phoenix are not the best facilities for babies of gastrochisis. Yes, we have amazing hospitals out here, but they concentrate on births of multiples, not complex birth defects.

My mother devoted weeks of her time helping me research surgeons and facilities around the country to get Dylan to. We could not decide between two hospitals: Children's Hospital of Philly and University of California San Francisco. But as our research deepened and my fight with Insurance began, we realized that UCSF was the place for our little Dylan. They are the first hospital to develop in-utero surgeries. The team of doctors there actually specialize in Gastroschisis, they average almost 3 gastroschisis surgeries a week. Plus, Casey's family is not too far from the hospital (I think we figured out it was just about an hour).

My parents and I just went out to meet with the surgical team as well as the OB and neonatologist this week. We were so impressed with everything that UCSF stood for. They had such an organized manor. They really understood the complexities of gastroschisis as well as simply having a baby with a congenital anomaly. Everyone was more than willing to give us a tour of the facility, find us housing, you name it they were there to help! We were able to meet Dr. Farmer and Dr. Lee, both surgeons that specialize in gastroschisis, they also have an amazing reputation in Phoenix. They gave us the rundown of the surgery as well as complications that can arise. We were able to meet with Dr. Hopkins, the OB, who set Dylan's birthday. On November 14th I will go in and have an amnioscentisis to make sure that Dylan's lungs are strong enough to thrive outside of the womb. If all goes well then I will be induced on the spot. If Dylan's lungs need some more development then I will be injected with steroids for the next 2 days and another anmio will be done on the 16th. If all is well then, then the induction happens again. If not, we just keep repeating. November 14th is 37 weeks gestationally for Dylan. Some babies come as early as 35 weeks, so it will be very important to have the stress tests done to make sure that I am in the right place when this little girl comes. The only thing that has me worried was when Dr. Hopkins said "BE PREPARED FOR 4 DAYS OF LABOR!!!" What?!?! This isn't what I signed up for. 4 days of labor? At least the laboring rooms overlook the Golden Gate Bridge. Dylan and I have had a "heart to heart", she has agreed that 4 hours of labor sounds good to her!

What is Gastroschisis?

2007-08-30T13:16:00.000-07:00

(The green box is a picture of her intestines outside of her body, the different colors are the blood flow )

Gastroschisis is an abdominal wall defect like omphalacele in which the anterior abdomen does not close properly allowing the intestines to protrude outside the fetus. The majority of fetuses with this problem are born to mothers in their late teens or early twenties. For some unknown reason, while the fetus is developing, the muscles of the abdominal wall do not form correctly. This allows some of the organs (stomach, intestine) to protrude outside the fetus's body. The organs outside of the fetus's body are floating in the amniotic fluid.
The amount of abdominal contents protruding outside of the fetus varies in each pregnancy. Some are very small (just a few loops of bowel), while others can be quite large and involve most of the intestine and stomach.

What is the Outcome for babies with Gastroschisis?

There is a range of severity for fetuses with gastroschisis that depends entirely on the condition of the intestine. Fortunately, most fetuses with gastroschisis do not have severe damage to the intestine before birth. The relatively normal intestine can be returned to the abdomen and the defect closed in one or two surgical operations shortly after birth. These babies will still be in the intensive care nursery for several weeks before the intestines work well enough to allow feeding and subsequent discharge home. However, these babies eventually feed normally and grow up normally .
Ten to twenty percent of fetuses with gastroschisis will have significant damage to the intestine that greatly complicates their postnatal course and, occasionally, prevents survival. Babies born with damaged intestine can have a very difficult and prolonged stay in the intensive care nursery. These babies often require several surgical operations to return of the intestine to the abdomen using a plastic silo and eventual closure of the abdominal wall. The bowel can be so damaged that parts of it have to be removed. In the worst case, there may not be enough bowel left to absorb food. The most severely affected babies may not survive, and others may be left with a "short bowel syndrome." At the very least, these babies will require nutritional support in the nursery for many months.

A sonogram will accurately diagnose gastroschisis and distinguish it from other similar conditions such as omphalocele. However, the test cannot always tell how severely the bowel damage is. Serial sonograms every few weeks may be necessary to see if the bowel outside the fetus’s body becomes dilated, develops a thick wall, or loses some blood flow.
Since 8 out of 10 fetuses with gastroschisis will not have damaged bowel and will do fine after birth, it is important to be able to identify those 2 fetuses out of the 10 who will have badly damaged bowel and may benefit from fetal intervention before birth. We follow all fetuses with a careful ultrasound examination every week or two to see if we can detect any change in the bowel.

As of the Ultrasound done on Tuesday August 28th all of Dylan's small intestines, most of her large and part of her liver are outside of her body. No big deal!! Just more to be put back in!!

Back Story

2007-08-30T10:30:00.000-07:00

(Dylan at 21 weeks)

Here is a quick back story on the life of Miss Dylan Michelle Smith. As most of you know Casey and I were married on January 5th (and 6th) of 2007 in Phoenix. Casey is in the Navy and was to be stationed in Atsugi Japan in March of 2007. He was able to return home for 30 days before leaving the country. And on March 13th 2007 Casey boarded a plane for Tokyo. 4 weeks later we learned the news that we were expecting our first child. As nervous as we were the excitement well outweighed it. The doctors set the due date to December 4th 2007, 40 weeks to the day that my dear Casey left the U.S. In April we had an Ultrasound done, and another one in June where my parents (wayne and michelle), Casey's mom (cheryl) and Meema (my grandmother) were able to attend. It was so neat to get to see the baby kick around and roll and play! The first grandbaby and great grandbaby was up on a giant screen in the doctors office, looking as healthy and as active as could be.

It was time for my second trimester Ultrasound. I had planned it so that Casey's parents could come on their way back from vacation in San Jose. So on July, 20th Mike, Cheryl and I made an early morning trip to Banner Desert Hospital for a routine Ultrasound. I laid on the chair for what seemed like forever, the Sonographer measured everything on little Dylan, from the leg to the heart, we were able to see her little feet kicking around. Dylan was fast asleep at this point. She also hadn't developed her hearing yet, so all of the fun toys that the Sonographer tried to use to get her to move didn't work. 45 minutes later the US tech left the room saying that she was needing Dylan to move. At this point my head started to kill me. Not sure if it was from laying on an uncomfortable chair for so long, or if it was mother's intuition. I had noticed that the Sonographer was very vocal in telling us what things were and then when she would start taking pictures of ABD she wouldn't say anything. Anywho, the US tech came back in and did some more measurements and then left again. I could tell something wasn't right at this point. She came back in minutes later Dr. Mills who is a perinatologist and radiologist. He came in and informed us that Dylan had a severe congenital anomaly (birth defect) known as gastroschisis. This is a abdominal wall defect in which her abdominal wall not closed all the way and her small intestines were now outside of her body. It happens in 1 out of every 10,000 births, but Dr. Mills says it has been on the rise lately. I sat there and just cried. How could this happen? How did this happen? Did something I do cause this? What about Casey? Will the baby make it? What about all of that stuff I have to do at work? Will Casey be able to make it home? How long will she be in the hospital? How am I going to tell my parents?

Dr. Mills went through the ends and outs of Gastroschisis versus an Omphalacele (genetic and chromosonal) and what caused it. Thank goodness that Mike and Cheryl (the in-laws) were with me, because I don't think I heard much after "Your baby has a birth defect". The Sonographer then asked if we wanted to know what the sex of the baby was. I answered with a stern "No". I was excited to make this a part of the pregnancy that Casey and I would get to experience together. We would both be there when the doctor exclaimed "Its a boy!" or "Its a girl!", even though I was sure it was a boy. The Sonographer put all of the US slides on a disk for me so that I could send them to Casey and my parents. She gave me strict instructions to delete slide 80 though because it would tell me if it was a boy or a girl. So with great self discipline I went home and deleted slide 80. I was sending Casey and my father pictures when I got to slide 35 and across the top of the picture it says "I'm a Girl! Girls Rule!" So there it was! Casey and I were having a girl. I can't lie, Fear struck me at first, a Girl? What do you do with a girl? I was convinced we were having a boy, so I hadn't bought any girl stuff. I felt like the worst mom in the world! But all that had to take a back seat for now. My daughter was sick. Was the best care for her in Phoenix? Was I going to go somewhere else? Plus, all of those questions that I thought of earlier still needed to be answered. What was Gastroschisis?