March of Dimes-March for Babies

April 19th will be the March of Dimes - March for Babies. I had already planned on walking the event due to our recent new found love for the March of Dimes and it's love for all babies. Some dear friends of ours have decided to start a family team in honor of Caleigh. This is absolutely wonderful and it brings tears to my eyes just thinking about it.

Because right now, premature birth touches half a million babies & their families every year. Because 120,000 babies are born with serious birth defects every year. Because every baby deserves someone in their corner.

Here's what I'm asking from our readers.....



If you love to walk, join us on April 19th at 9am for a 3.5 mile journey. You can sign up under Caleigh's team here. If you sign up for the March for Babies you will get your own web address and fundraising page. Choose a fundraising goal. Feel free to use any picture of Caleigh on your web page. And most of all have fun!

If you want to help, and can't make it out for the walk, you can donate to our fundraising efforts here.

A big shout out to Corrie (Team Captain) & Holly B. for setting up the 'Walk for Caleigh' team! And a special thanks to Donna H. for thinking of us :-) I know this year's walk will be one that we will never forget. Thanks guys!

Event Info:

Family Teams: Walk for Caleigh

Fort Worth
4.19.08
Farrington Field
1501 North Univeristy Dr.
Start Time: 9am
Registration: 8:30am

I have also been asked to photograph the kick off breakfast for March for Babies this next Friday. I'm really excited to attended another March of Dimes event and help out any way that I can. On top of that....I was asked to tell 'our' story at a kick off for the 2008 Signature Chefs event at Cooks the following week. Lots going on in the coming weeks. Whhheeeewwww....

Starting Over, Milk Bank

Ok, so just a short little snippet.... On Sunday afternoon we started Caleigh's feeds again at 3ml an hour. Tuesday we went up to 4ml an hour and this morning we went up to 5ml an hour. Every 24 hours we will up the amount by one ml to a max of 10ml and then hold steady for a long time. Caleigh is on the Flagyl probiotic to help the bacterial overgrowth stay away. She is on Reglan and Protonics still to help with her motility. With these new meds Caleigh is actually having big girl stools! Cute, little, brown, formed poo poo......we have never been so happy! She on the other hand isn't too happy about it and cries the whole time she is trying to go. We hate to tell her, but this is what being a big girl is all about!

Here's some much needed pictures.....

Caleigh & her Daddy

Caleigh & Mommy

Caleigh's first time in an exer-saucer. She hated it at first......

and then she learned to love the bouncing & toys..... well sorta.....

I just thought this one was cute.......

Friday to Sunday

Things have been a bit nuts and when I have been home I have done nothing but sleep. So lets start with Friday.... We got to the hospital at 7:15 to go to the contrast study by 7:45am. Caleigh's stomach was huge and her stomach drainage was a terrible green color. She was crying, unhappy and wasn't about to cooperate so we gave her some versed to help calm her down. We finally made it to the contrast study over at Cooks by 8:15am. They injected the contrast through her G-button and the contrast just started oozing out of the hole around her button. So it didn't make the pictures easy to see because there was contrast everywhere and not just in her bowels. After a lot of contrast and several x-rays, we were sent out in the hall to let everything travel through. About 15 min later we went back in and took more pics and then we were sent back out again. Same thing again and then we went back to Harris. After several more bedside x-rays everything went through Caleigh's system by 1:30pm. Not to bad. 5 hrs. There are 2 dilated loops of bowel that everything gets 'hung' up in. Those sections aren't doing the necessary pulsating that they are supposed to, which leads us to the issue of motility. The formula slowly builds up and creates bacteria from the areas being stagnate. This is why we only make it a few weeks of eating at a time. Ok, so that was exactly what we thought was going on, but needed to be confirmed. What's the cure? Try to find a balance, try to feed again, try, try again.

I stopped for a break around 3 to go eat lunch with one of our favorite nurses, Kenzi.

When the GI doc had been by that morning I told him that Caleigh's stool had this crazy acid, bloody smell to it. So he sent off a sample and sure enough it came back as positive for blood. A little discerning but probably normal due to all the irritation of her belly swelling up. In the mean time Caleigh's G-button looked horrible. It was raised above the skin, high, and it was terribly red and irritated. Caleigh's doc called for the surgeon to come look at it. The surgeon called a ET nurse (wound care nurse) to come look at it to. She showed up the same time as the surgeon. Dr. Vaughn took one look and a couple of painful tugs at it and decided that Caleigh needed a new button. I'm just going to interject here, Caleigh's diaper leaked all over me.... So then he started naming off things that he needed, to perform this task at Caleigh's bedside. Just like on TV I swear! He suggested I leave the room......uhhhhh...yeah...ya think! We gave her some morphine, he went to Cooks to get a new button and some supplies......ladi ladi da...30 min later Caleigh had a new button. She got a Mic-Key button which should be easier to replace if need be. His thoughts were that she had pulled and tugged at it so much that it was half in the stomach and half out of the stomach. She knows exactly where that button is and if she is undressed you can be sure that she will grab at it. When we fed her or her gastric juices were coming out of the hole; the liquid was getting into the surrounding skin tissue and causing the irritation and causing the new bloodly stools. So after a few more calls we were off to Cooks again for another contrast study at about 5:30pm. Dr. Vaughn wanted this one to make sure that the button was in place and not leaking out of the stomach into the abdomen. There was a little leakage outside of the button onto the skin, but nothing like before and everything looked good inside. Back to Harris we went........ I eventually went home and slept, Eric went up and sat with Caleigh most of the night.

longest post ever continues on.....

Saturday

Yesterday, Saturday, Caleigh was doing better. Her G-button was set to suction and it was pulling a lot of the old blood out of her stomach. That afternoon we switched it to gravity and we will probably start small feeds again in the next couple of days. The button is leaking a yellow, oily type of secretion, but I think that is just her body trying to heal. Caleigh's bloodwork had come back with some elevated white blood counts, a few days ago, which indicates infection, but at 48 hrs nothing had grown on the cultures so they have stopped the antibotics. They are replacing the fluids that Caleigh is putting out with the suction and by gravity with Saline so that she doesn't get dehydrated. So she is a bit swollen right now to. We are still cycling her TPN off, but only for 3 hrs a day while she isn't eating. Her belly looked better, softer and more comfortable.

Today, Sunday, hmmmm I'm on my way up to the hospital. She seems to be doing better each day since we stopped feeds, which is exactly how she reacts every time. Happier without food....that's our little girl.

So needless to say, we are exhausted. Hopeful, optimistic but exhausted. Just when we get our hopes up this always happens. It's ok to get our spirits high in hopes of Caleigh coming home because that is what gets us through the weeks in between. So maybe this next time will be the ticket home we are hoping for.

Moon walk backwards

Well, Caleigh hit her stopping point this morning. With her belly painfully distended we stopped her feeds once more. They put her G-button to gravity and then changed it to suction to help decompress her tummy. We probably got 100ml of green stomach acid out with the help of suction. Her tummy is still huge but looks a tiny bit more comfortable. Lets see if I can give you the run down.... ok, she got tons of bloodwork done, lots of new meds and we scheduled her for another contrast study at 7:45am tomorrow. Some of the preliminary bloodwork came back saying that Caleigh has an infection. We will know exactly what kind of infection in 24 hrs. So she is on three different antibotics & two meds to help with her motility. No formula of course and so she is on her TPN all day again. They are only cycling off for two hours a day instead of eight so Caleigh's bilirubin is sure to go up again. The contrast study is to see if there is another obstruction and if they find one then we will be ready for surgery again. Praying that there isn't surgery in our future. We'll see what tomorrow brings.

Today was a really hard day, not just for Caleigh & I, but for everyone in the NICU. Around 2 or 3 a baby in the adjacent room passed away. We could hear the mom crying out in pain. Not a dry eye in the room, we were all silent. Crying, holding Caleigh's little hand; I wondered why? This happens a lot in the NICU, this is life, but why? 30 yrs ago if Caleigh had been born with the challenges that she has now, she wouldn't have made it. I would be that mom, crying, yelling. As I sat next to my daughter praying for the baby and it's grieving family; I realized that I have been caught up in details and taking the day to day time with Caleigh for granted. Being positive and naive contributes to the life taken for granted. What if? At that moment I really realized that Caleigh has been in the hospital for so long because she is a sick baby. I hadn't come to admit it yet, I have a sick baby. Why was that so hard for me? Blocking it out, I guess. Of course she is a 'fighter' & 'strong' & all the other fearless words we have described her as, but at that moment she was my sick, fragile, still not home yet, baby.

Please pray for this family and their beautiful baby and all the families that have lost their children.

Thank you to everyone that replied with financial advisors. I'll write everything down & when Caleigh comes home.......I'll deal with it then. Being with our baby is number one right now.

23 wks on the 23rd

Yesterday Caleigh's tummy got huge again. So we backed off to to 7ml an hour and will probably wait four or five more days before we try 8ml again. This may be her stopping point for now. We may just have to wait and see. Every other day we check a stool reduction sample and so far so good, no dumping.

Eric and I have been battling the insurance company and finally got some inside information (Thanks to Nurse Laura). When a family is going through anything like this, having someone sick or in the hospital, why should their energy be spent fighting with an insurance company for every last dime & claim. We had actually stopped fighting and calling back in November, but with the new year and new deductibles, we need some sort of resolution. Urggghhhh!

Just throwing this out there....... does anyone know of a great financial adviser that we could sit down to talk with? With medical bills, deciding what is tax deductible & bills in general we need some guidance. We knew having a baby would be expensive, but with a 5 month hospital stay, all I can say is wow!

So obviously money, insurance and future plans have been on my mind this morning. With Caleigh possibly coming home in the near future we just want everything organized..... Yes, I know, obsessive compulsive, control nut, etc. etc.

8ml

Caleigh is now up to 8ml an hour on her feedings. Things seem to be progressing smoothly and we hope that she continues to move right up the formula ladder. I got Caleigh's weight this morning and she is a huge 9lbs. 1oz! Can you believe it? I still see her as that tiny 2 pounder but with chubby cheeks.

Caleigh's last few stool reduction samples have come back negative so she isn't dumping any of her nutrition.

On a side note, there is a new liver treatment that we are trying to get for Caleigh. Things haven't gone through yet and we don't want to jinx it, but I will give all the details as soon as we know that it is approved by the hospital. Pray that it is.

12 or more things

A few things we have learned:

We are old, much older & more mature than we were 1 year ago

How do you do it they ask? Because we have to. Wouldn't you?

We know more about the human body than one person, who isn't in medical school, needs to know.

Reanastomosis, ileocecal valve, periventricular leukomalacia, Gastroschisis etc. are big words that normal people do say on a day to day basis...you just have to find those people

12 or more different ways to say thank you and really mean it.

Nurses are your best friend while your baby is in the NICU, make sure you thank them often

Pumping breastmilk for a baby that doesn't eat for 3.5 months really isn't a waste of time......trust me

Laundry doesn't fold itself

Being positive & optimistic will get you far, but crying when you need to will bring you peace.

Our family isn't alone in our situation, although every situation is different.

Groceries don't just show up in your fridge.

If you don't like the answer, ask the question again.

Doctors are people too, they have lives, they have feelings, they have families, they care.

Blogging is great therapy.

NICUitis

Just a small update.....right now Caleigh is on 6ml of Neocate a hour continuous feeds and they bumped her pectin amount up to 3% to help with her loose stools. Tonight we are doing a stool reduction sample to see if she is dumping her sugars and basically losing nutrition. If it comes back positive we will go back down to 5ml an hour and then only go up 1 ml once a week. Her last reduction sample came back as trace so they want to keep checking. Hopefully we can keep going up on her feeds and I pray she keeps tolerating the changes.

The new pump and bags have been a bit of an adjustment for the nurses to get used to. There are a lot of specifics and no one had used them before. So today I wrote out an instruction sheet for who ever is taking care of Caleigh. At this point Eric and I are more than mom and dad......we are Caleigh's nurse too. I guess that comes along with 'caretaker' and I wouldn't want it any other way. Since the new equipment came into the picture; I have been feeling like there are too many hands in the basket. I'm ready to bring Caleigh home so that we can control the situation a little better and not have to worry about mistakes or infections. I'm sure it's just a control thing. Just the normal stuff that we have come to be concerned about. I've been told we have NICUitis and I'm pretty sure we do!

Caleigh's G-button is still having a really hard time healing. We did a silver nitrate treatment to the granulation tissue around the button opening about 4 days ago and again yesterday morning. This breaks down the granulation tissue and helps stop the drainage that we have been having. This last dose has caused the skin around the button to start to peel away. Caleigh's belly looks kinda like a burn victim, poor baby. She acts like it hurts a lot and I just feel terrible for her. We've started putting antibiotic ointment on it today and will continue until it gets better. We just pray that it won't get infected again. Apparently, G-buttons are horrible about leaking, growing the granulation tissue and just being a big pain to deal with, but what should we expect with a hole in the stomach. So we are watching the site and being extremely careful with it.

Until next time......

5 Months Old

Caleigh wearing her BabyLegs
8lbs 8oz, 20 inches long
Caleigh's height & weight is in the 5th percentile as of now

Wow, time sure does fly......it seems like just yesterday Caleigh was recovering from surgery on her 4 month b-day. So yesterday Caleigh was 5 months old and Eric and I stayed up late to make all the doctors and nurses + staff cookies. We attached a note that said:

Caleigh Gray is 5 months old today!
Enjoy a cookie or a few and know that we appreciate everything you do.
With Love,
Eric, Holly & Caleigh Gray

Everyone loved the cookies and we talked about how tiny Caleigh was just a short 5 months ago. It was a really nice day.
As far as medical updates, Yesterday we finally got the Ferrall Valve Bags, a brand new Zevex EnteraLite Infinity Enteral Feeding Pump with feeding bags too. We had to get all of this through Cooks Home Health and wow was it a pain to get. We got the order 4 days ago and got everything just yesterday due to our insurance denying the claim. So Dr. Ogunmola (did I say how much we love this man!) had to write a letter and get it approved. Finally, it happened and we set everything up last night and it is all running super smoothly. I'm actually really excited about it. Funny what you get a kick out of when your baby is in the hospital! So now maybe all that extra air & gas can escape out of Caleigh's tummy and she can feel much better. We moved her feeding up to 5ml an hour and she seems ok with it for now. We also started cycling Caleigh's TPN off for 8 hrs a day now (instead of 4) to help her liver get a rest. This weeks lab work was really exciting too because Caleigh's bilirubin levels went from 12 down to 9! It's a combination of her getting formula constantly and the meds + cycling of the nutrition. Whatever it takes to get her there.

On the going home front lines....... We've been told that Caleigh needs to be half way on her feeds before they would let her go home. Even then she would be on TPN & pump feedings and it would be a hospital at our home. Eric & I are prepared for this and can't wait really. Right now Caleigh is getting 5 ml an hour continuous feeds. To be half way she needs to be consistently taking in 13ml or more an hour round the clock to be able to go home. There is some talk that she may not make it half way with her feeds in the first year of her life and if that is the case then she will go home on less. The new pump & bags that we got yesterday will go home with us and then we will get all the equipment for her TPN too. So we are still a month or more away from this happening but at least there is a plan.

Popsicle Time!

On the eve of Caleigh's 5 month Birthday.....
When all the doctors were gone to lunch......
Caleigh got to taste a CHERRY POPSICLE!

At first she didn't want anything to do with it. Man is this thing cold!

and then something clicked.....hmmmmm.....this tastes good

Yummy!

I love the popsicle stash.....

Short video of Caleigh's first food experience. No babies were hurt in the making of this video.....

Caleigh was a little upset that mommy ate the majority of the popsicle and she gave me a crazy look the whole time. Caleigh had beautiful Cherry red lips all day. What a fun day it was!

GI Doc

Ok, so not too much has happened in the last couple of days. We are up to 4ml and hour continuous feeds. We upped the amount of Pectin to 2% (we were at 1%), to help with Caleigh's loose stools. Eric and I met with another GI doctor, and he ordered a special kind of feeding bag for Caleigh. It's called a Farrell Valve Bag (click on the 1st choice on Google) and it lets us feed Caleigh and vent her tummy of air & gas constantly. They seems to think a lot of her discomfort is from gas and air trapped in her belly. We'll see how it goes and maybe it will help get her volume up because she is feeling better.

Eric and I are running off to the hospital now, but I will update more later. XOXO

and go man go....

Eric trying to entertain a fussy baby, checkout that frown :-(

So now Caleigh is up to 3ml an hour of Neocate formula + Pectin. She was very, very fussy the past couple of days but I think she is starting to feel better. For the last week she was just cat-napping here and there and never really sleeping more than 20 minutes. Last night she slept for a full 4 hours without a peep.

One of our docs ordered Maalox paste to be put around Caleigh's G-button. It is supposed to neutralize the stomach acid that is oozing out of her button area. We are still on the steroid cream to help the skin around it as well. Caleigh is getting all of her extra meds through her g-button now, which makes it easier when timing things. There for a couple of days we were messing with her every 30 min to an hour just giving her meds, cleaning her button, changing her diaper..... No wonder the girl can't sleep she thinks something will happen to her. So now she gets all her meds at 8 am & 8 pm.

Lets talk poopie people........ The pectin and new formula seems to be really working on slowing things down and giving her stool substance. It doesn't even soak into the diaper now! Whaooo!

The GI doctor told us that Caleigh would be on continuous feeds for a long time because she thinks of it this way: When you have a down pour of rain, which is the equivalent of eating every 3 hrs by bottle, there is a lot of run off and the rain doesn't soak into the ground. So when there is a slow steady rain, which is like continuous feeds, all the rain slowly soaks into to the ground. Caleigh is considered to have short bowel syndrome and her amazingly fast intestinal tract wouldn't soak up the nutrients she needs if we did the typical bottle feedings. So when Caleigh does get to go home she will be on continuous feeds.

I've had a lot of people ask about a previous post where I stated that Caleigh would be going home on the TPN and that is why we had started doing her dressing changes. I apologize if that was misleading, Caleigh still has a long time before she can go home, probably months still. We need to get her up to at least half feeds of formula before they would consider it. As long as her belly is blowing up and becoming distended every other week there is no way we are ready. At the pace we are going now, upping her feeds by 1 ml every other day, we still have at least 2-3 months left before we are half way with our feeds and even then she would be on the TPN. Saddening, we know, but were positive we will have Caleigh home before her 1st birthday.

Three to get ready

Yesterday, I waited around, with Caleigh, ALL day again for the GI doctor. I was very aggravated that no one had showed up and was on the edge of requesting someone else. After all we were waiting on their decision to feed Caleigh three days ago! After numerous phone calls and paging the doctor she finally arrived at Caleigh's bedside. She apologized for keeping us waiting. I sat there and gave Dr. Hunt (GI Doc) Caleigh's history, what I thought was going on, and just about everything I could think of. She asked questions, we talked about formulas, reactions to everything so far and then she asked me if I was a nurse......

So Dr. Hunt started Caleigh on Neocate formula with Pectin added in to help with Caleigh's loose stools. She is getting 2ml an hour, full strength (2 teaspoons) continuous feed through her G-button. We are only going to raise the amount by 1ml every other day so that we don't push her too much. We also started Caleigh on an antibiotic, Flagyl, which is a probiotic. This should help get rid of any Bacterial Overgrowth that she may have. She also started Caleigh back on the Ursodiol, which is a medicine to help her liver function.

I feel like we made a lot of good decisions and hopefully this will be the time that things fall into place and start working.

I know, I know what a horrible mom not to post any pictures for two days in a row! Shame on me....maybe tomorrow!

Two for the show

Just a quick update...sorry no pics.

Yesterday, Eric and I waited around ALL day to see all of Caleigh's doctors. We got to see two out of three so it was a successful day. We got to ask our regular doctor, neo, a lot of questions. We saw Caleigh's surgeon at the end of shift. Things are looking better and the redness around her button is starting to go away. The surgeon ordered a contrast study for today to look at how Caleigh's g-button is doing. It may be displaced and that may be why she got the infection. Formula and stomach juices were coming back out onto her skin and that isn't how it's supposed to work. So we'll go do that today and see how things are working.

Were still waiting on the GI consult. No one came by yesterday so maybe today. We will not start feeding until we get the results of the contrast study. So possibly tomorrow or Thursday.

Caleigh weighs 8 lbs 10.5 oz and is 20 inches long

One for the money

Caleigh & Daddy taking a nap together

Caleigh is feeling much better with a few days of antibiotics in her. They do bloodwork that measures her CRP levels to check and see if there is infection. Caleigh's level was at 17 and is now back down to 8. So the antibiotics are working and getting rid of the infection. Her G-button site looks better as well.

After we gave Caleigh a bath, we sat down to play with her. She loves her Daddy!

Sadly enough Caleigh seems to be a much happier baby when we aren't feeding her. She's more bright eyed, interactive, and generally just in a better mood. Eric and I also started doing her CVL dressing changes. This is a big deal because there has to be a sterile field. I never knew how difficult it could be to put gloves on without touching them! It takes a team to hold Caleigh's pacifier, hold her arms down and talk to her while another person actually does the dressing change. Caleigh's CVL is her life line right now and cleanliness and proper techniques are very important. We don't need any infections. There has been talk of her going home on the TPN and that is why we started doing the dressing changes ourselves.

We have been working with Caleigh to start holding her paci in her mouth and to also bring it to her mouth when it falls out. She doesn't have it down without some help still but she is learning really well so far.

I've also been asked a lot 'where did you get that pacifier holder?' Well, I got it at Target and it's called the Soothie Pacifier Attacher. In one day alone Caleigh had spit 4 pacis on the hospital floor. Once it hits the hospital floor there is no saving it. So the nurses would have to go get another one. I would be interested to know how many soothies we have been through.....maybe 40 by now! The adorable, large, pink flower has saved us and she hasn't needed another paci since we got it.

Tomorrow, we will be seeing all of our regular doctors and maybe the GI doctor as well. We have soooo many questions for the GI doc...poor guy! There was talk about trying to feed again on Monday but we will just have to see if she is ready.

Stopping on the side

Today we had to stop Caleigh's feeds completely. Her little belly swelled up again and got really hard. We put her g-tube to gravity and got 40ml of what looked like stool out of the stomach. Her tummy is softer now and she seems to be feeling better. She was backing up all this time and it finally caught up with her. Caleigh has been running a low temp probably because of the skin infection. She is still on antibiotics for the infection so hopefully they will start making her feel a little better. Her blood pressure has been good throughout all of this and she hasn't needed her medicine in a few days now.

So what does this mean? We aren't sure yet. It could be a combination of things. They are doing x-rays every morning to watch for blockages and our main doctors and surgeons will be back on Monday. So we will see what they say. We are also going to meet with a GI doctor to see if we can find some sort of 'magic' mixture of formula and medicines that will work with Caleigh. We still seem to think that Caleigh has motility issues from when she was in-utero there was a lot of damage. Even though the bowel 'pinked' up and was able to be saved it still suffered some damage. So we think things just aren't moving though at the pace they should be.

Frustration is a constant everyday now. The amazing surgery that Caleigh struggled to make it through, seems to have been only a stepping stone instead of the answer. We can't explain just how badly we want Caleigh to come home and feel better, the feeling is overwhelming. We still get our strength from Caleigh and how amazingly strong she has been through all of this. We can only hope that the situation just gets better from here on out.

20 wks old

We hope everyone had a great New Years........
Caleigh had a good day and the doctors bumped her feeding up to 10 ml an hour at full strength. This morning though she started her usual 'dumping' where her stools are watery and don't have any substance to them. So we didn't change her feeds today and just decided to stay where were at. Caleigh's G-button site looks absolutely horrible. The past 4 day I've been telling every doctor, surgeon and nurse practitioner that came by that it looked infected and that we should do something about it but they just kept saying that we would watch it........don't they know that is what I have been doing and I knew it was getting worse. So today I think it must have looked bad enough for them to do something. She was running a low fever and the area is red, warm and oozy. They started some antibiotics and sent off some blood cultures to see what type of infection it is. With the dumping and infection, Caleigh just doesn't feel very good. Hopefully the antibiotics will kick in soon and things will start clearing up. As far as the feedings go.....I don't know, I guess we will just have to wait and see.