STEP Decisions

Today's conference with all of our doctors went really well. They are such caring people and I know that they are doing everything possible for our little girl. I think we talked for an hour and it really helped us go through the options and most importantly get all of our questions answered. This is a huge step for Caleigh and us.

So the doctors are advocating for Caleigh to have the STEP (Serial Transverse Enteroplasty) procedure done. The link will explain the procedure and there is a picture as well. In 2002 a doctor in Boston did the first STEP procedure so it is fairly new. The surgery has its ups and downs but at this point not doing anything is more harmful than the complications of surgery. The longer Caleigh is on the TPN for nutrition the harder her liver is having to work. So the sooner we can get feeds going at a good rate the better.

If you have an hour (and a strong stomach) you can watch a actual STEP procedure here

The video really helped Eric and I visualize what our little princess will be going through. They want to do the surgery sometime next week and they will put a new CVL (Central Line) in and also repair Caleigh's hernia at the same time. So she will be getting a 3 for 1 surgery day! We went home this evening to talk about the surgery and think on it and I'm pretty sure we are going to give the docs the go ahead tomorrow. I pray that we are guided to make the right decisions. That Caleigh's surgery is free of complications and that the doctors and surgeons are filled with the knowledge and skill that only God and hard work can give.

So Eric and I are going to try to room in a few more times before Caleigh isn't as 'portable' as she is now and spend lots of time loving on her as usual.

Rooming In

Yesterday, Eric and I roomed in with Caleigh. It was nice to be in our own room without all the noise of the NICU. We started the morning off with a bath and then OT came and worked with Caleigh. Of course she was worn out from the bath so she fell asleep pretty quick after that. We held her all day and dad and I took turns cat napping which was nice. The day went really well and I think it was really good for all of us to have that time together.

Caleigh is still spitting up and today the docs put a transpyloric tube down Caleigh's nose instead of the NG feeding tube that she normally has. The new tube bypasses her stomach and goes straight to her intestines. Instead of orange it is yellow and it is a little bit harder than the orange one. This will be able to tell us if Caleigh is having reflux or if her stomach is backing up with formula. We should know this in the next day or two. So far Caleigh isn't getting very much milk at all and what she is getting she is spitting up so she really isn't getting any nutrition from the feeding process. Basically, it's not working which leads us to the next step.........

So, tomorrow Eric and I will sit down with all of our doctors to do what they call a care conference. Yep, it's Caleigh's first parent - teacher conference! We are going to go over the options and most likely set a time for the next surgery. The main thing is what to do once they get in there and what the outcomes might be. There are several options and every case is different so we will just have to see. I think it will be good to sit down and go over some goals and hopefully we will feel better after we talk to everyone.

Here's a video of Caleigh holding her head up like a big girl. Of course she was more interested in the window than the camera!

Silver Lining

Who's got a double chin? So precious......

Thank you for everyone's comments and positive words of advice. I was obviously extremely frustrated yesterday and I'm pretty sure it was sensed through my words. I apologize, usually I'm the bubbly optimistic one, but a girl needs a day or two to be down in the dumps.

We're doing much better today (or semi better) I got to talk to our other surgeon and he seems to think that there are other steps and surgeries that can be done before we throw in the towel. Yesterday I got the sense that there wasn't anything else that they could do. This was devastating and scary nonetheless. Today there is some hope and at least a small plan in the works. Caleigh would need surgery again and if all goes as planned it would happen this week. The formula feeds just aren't working. Caleigh's tummy hurts and she just can't quit spitting up and gagging. If we are going to go with the surgery .... I will post details.

Another new development is that we requested a sit down with all of our surgeons and doctors so that everyone is on the same page with Caleigh's care. Everyone has the same goal of getting our little girl home but their plans change from day to day and it can be confusing sometimes. So hopefully this will happen early this week and we will have a short term plan.

Please keep those thoughts & prayers coming and I will keep the updates rolling ;-)

Turkey Day Snow with the family!

What a snowy turkey day we had! Ok, so it's just a dusting of white stuff but it was still fun. In Texas we can't ask for much more. It was nice and pretty without the ice we usually get. We aren't counting this as Caleigh's first snow. So maybe it will snow again when she gets out of the hospital.

Frustration & Patience

Today I finally got to talk to the surgeon about Caleigh's progress and what the 'game' plan is. In a nut shell, we really need this new formula to work. This is it.....the last straw before surgeries some experimental, some a guessing game and others involving many serious life threatening outcomes including transplant. Caleigh's small intestines are too 'stretched' out from damage. This makes the motility poor and the passing of food almost at a snails pace. Hopefully, this formula will help the intestines soak up the nutrients like they should and get things moving along. Right now Caleigh is on continuous feeding for 3 hrs on and then 3 hrs off. 3ml an hr for 3 hours and then resting and digesting for 3 hrs all day and night. Prayers & faith are needed for this working.


We're king and queen of the positive police but sometimes it's hard to be optimistic all the time. The doctors asked for patience and say they understand our frustration, but do they? I think they have a frustration of not knowing, not being able to 'fix' it, but do they understand what it is like to be the mother and father of a baby that has never seen her nursery, never been held by most of her loved ones and never been outside on a warm sunny day? I'm not asking for them to understand but I would love for them to not mention the rollercoaster or long road ahead when we are feeling tired, weak and alone with our situation. That being said, we are so blessed to have a great team of doctors, surgeons and nurses that really do care about Caleigh and our family deeply. It's hard to console a family who has a baby in the NICU especially when things aren't going as well as they could and we completely understand that. So, Frustration is an understatement at this point, but Patience is our only choice.

Turkey Day

Oh the world of formula.......We started Caleigh on EleCare formula yesterday and it hasn't started off so great. EleCare is the most elemental of formulas on the medical market. It's broken down particles of nutrition and man does it smell great! ;-) Caleigh started off with a bang and spit up her first feed and then the second and then the third.....so we switched to continous feeds on a pump again. She is still spitting up. I think we are going to evaluate things today and see what the next step would be.

I'm going up to the hospital to sit with Caleigh all morning and then off to the family get-togethers. Eric is working at the station today but I'm sure they will be well fed!

Caleigh's first turkey handprint

Happy Thanksgiving!
We hope everyone has a safe and thankful day.

A Tub, To Cooks, Daddy Look-A-Like

Caleigh's 1st tub bath!

We've never been able to give Caleigh a tub bath since she had the CVL in her chest. Now that her line is in her arm we were able to actually put her in the water. She wasn't pleased with the whole experience but I think she will like it eventually. It's amazing to experience these firsts that would have been taken for granted and long passed by if we weren't in our situation.

Caleigh went for another water soluble enema at Cooks yesterday. Everything looks about the same. A possible narrowing, slow motility in the small intestines, etc. etc. She was not happy about the situation and screamed the whole time. The plan is to start the new formula tonight or tomorrow.

Over the last couple of weeks Caleigh has really started reacting like a newborn baby should. No more sleepy baby. We get to the hospital at 7:30am every morning now because Caleigh wakes up at 8 o'clock crying and wanting to be held. We are on her schedule now and so it should be! As soon as we hold her she is happy and ready to play.

This morning Caleigh held her head up and looked around for 2 1/2 hours just as content as can be. She loves to stare into our eyes and watch our faces. It's just amazing to get that interaction after all this time.

And finally, by popular demand.........(drum role please).........
Tada! The daddy-daughter photograph!
Did I have anything to do with the making of this child ;-)

3 Months Old, 6 lbs. 5.5 oz.

Can you believe it? Caleigh is 3 months old today! When I say it, or in this case type it, I just can't believe I was rushed to the O.R. 3 months ago to deliver our little 2 pound miracle! Yikes!

Today was a good day in the NICU for Caleigh. Mommy bought her a birthday dress and gave her a manicure, complete with a lotion massage. A birthday spa package if you will. When we were done there was lots of snuggling.

Rootin' Around!

Caleigh still isn't eating. She has the suction tube and the surgeons are talking about doing another contrast study before we start feeds again. The formula that Caleigh will start soon is called Alimentum. It is broken down into particles of elements so that her body doesn't have to do all the work. Apparently, it works pretty good on gut babies and I truly hope it works for Caleigh. The scalp IV started to look red so they took it out and put a new IV in Caleigh's foot. She has to have an IV because the antibotics and medicine that she is on can't mix with the TPN going through the picc line. Poor Caleigh.......she's sporting a mohawk-mullet hairdo because the doc had to shave her head on each side to look for a good vein. Good thing Caleigh has lots of hats!

On Tuesday night, National Prematurity Awareness Day, I was invited to photograph the March of Dimes Signature Chefs Auction. It was a wonderful event lead by an amazing woman, Lisa Grubbs. Lisa just so happens to be the wife of Caleigh's neonatologist, Dr. Grubbs. Small world! I emailed the March of Dimes Fort Worth chapter offering to volunteer with anything that they had going on and that's how I met Lisa. It was a wonderful evening with great food and the love for premature babies. I believe the event raised over $200,000 for premature babies everywhere. I can't wait for next year!

Just some facts from Tuesday evening:
Did you know that:

$5000 could pay for one critical premature baby's air flight transport to the nearest level III neonatal intensive care unit?

$2500 could pay for a ventilator for ONE day for a baby cared for in the NICU?

$1000 could fund a program to help 47 pregnant women quit smoking?

$500 could provide prenatal care classes for 10 pregnant women?

$250 could provide respiratory treatment for 1-1.5 days to help a premature baby breathe more easily?

$100 could help 10 families with babies in neonatal intensive care learn how to take care of their baby when he or she comes home?

A truly touching and emotional story written by Lisa Grubbs:

Once Upon a Time a Baby Was Born. The child was too early and so very small. Although fragile, the child was loved fiercely by her parents. Just before the baby's birth the expectant parents were making plans for the final three months of pregnancy. The mother planned shopping trips for nursery bedding and baby clothing. The father imagined his firstborn daughter and all the hopes and dreams he had for her. But today all those plans, hopes and dreams were swept away - joy and anticipation were replaced with panic and fear as they watched their two pound daughter struggle to survive. Machines and tubes were attached to her body, keeping her alive. Hours turned into days, days into weeks and weeks into months. Every day brought with it a roller coaster of emotions, some joyous, but many painful as they learned about prematurity in the most personal way a person can.....through the birth of their daughter who had been born to soon.

Every baby deserves a healthy start and every mother deserves a full nine months of pregnancy.

No More Mommies Milk

Just a comparison of how much Caleigh has grown since birth. She's just three days shy of 3 months old. She's a whopping 6 pounds 7.2 ounces & 18 inches long today.

Caleigh has been feeling better since Saturday. Yesterday, The doctors put a picc line in her left arm and it will serve as the 'IV food' line until it doesn't work anymore or it gets infected. The picc lines get infected easier than the central lines but it is a temporary solution. The area where the central line had been is looking a lot better. Less red and a lot less swollen. Early Sunday morning Caleigh started having bloody stools and it hasn't really stopped. The blood is dark which means it is old blood. Her belly got really huge again. So they stopped her feeds and put the suction tube back in to get the air out of her belly. Eric and I stayed at the hospital all day on Sunday and right as we were leaving Caleigh had a 'Brady' episode where her heart rate dropped, her o2 saturation dropped and she was basically a shade of purple-blue. They gave her some oxygen and she recovered fine. Obviously, this scared us. We had to leave during shift change so we came home, I pumped, slept an hour or so and then went back to the hospital and stayed all night with her. Eric started driver school for work today so he came up around 5am and sat with us before going in. She had a better night and no more episodes of not breathing, thank God. Today her belly looks better and her central line site is clearing up. All the preliminary lab work has come back negative for infection. We are still waiting on the cultures which they let 'grow' for a few days to see if anything is there. No signs of Necrosis either, it a miracle!

So Dr. Vaughn, the best surgeon ever, came by and talked to us this afternoon. He thinks she did out grow the central line and it just 'popped' apart inside her. He isn't going to put another CVL in unless they use up all her picc line spots. He thinks that the belly being distended and the bloody stools are a reaction from the stress on her body. It would have happened sooner or later but the line getting displaced stressed her body enough to show us the belly problems. She had been tolerating the breast milk, but had started having loose stools. Basically, Dr. Vaughn thinks that Caleigh's intestines can't handle the complexity of the breast milk. Case in point the bloody stools. A lot of short gut babies can't break down all the elements in breast milk and we knew this going in. So we are going to wait about a week or so to let her rest and then we will start an elemental formula. I'm really sad about this and actually cried because I won't be able to breastfeed Caleigh or give her any of the milk I have been pumping for almost 3 months. But, It's best for her and that is all that counts. Plus I can donate tons of milk to preemie babies all over the country who will grow strong because of it.

So, no surgeries right now, mom feels better about the decisions that have been made and Caleigh is feeling physically better. Today was a good day & I'm ready for some sleep.

Room 3, again

Caleigh 2 days ago. She even sleeps just like daddy!!!

You know that feeling....the one you get deep inside your gut that just keeps coming up no matter how hard you try to ignore it? Mommies intuition, gut feeling, GOD yelling at you from the inside. When they moved Caleigh to room 2 it started. I pushed it back down trying to be positive. When she moved to room 1, I started to analyze my feelings more, still trying to stay optimistic. Yesterday, I almost spoke up about moving her back to room 3, but I decided not to. Of course it wasn't anything against the room, or new neighbors, or nurses. Everyone has been amazing with our family, but I kept getting the feeling that Caleigh wasn't ready ....... that we weren't ready for the move ..........

This morning I woke up early, so I decided to go to the hospital a little bit earlier than usual. When I got there and went to change Caleigh's diaper I noticed that the area around her central line in her chest was red and very puffy. Caleigh was fussy and her temp was warm for her. We called the nurse practitioner, who called the doc on call. Dr. Sidebottom decided to take Caleigh's central line out and try a regular IV for the day. He couldn't get a great stick on her arm so he had to put one in her head. Caleigh now has a baby mohawk because he had to shave both sides to see where he could get a good vein. It looks horrible but it is a great vein on babies. They gave her some pain meds and took out the CVL. The CVL (central line) gives Caleigh her nutrition intravenously. This is the TPN and lipids (fats) that I have talked about. It's very important for her to have a line especially since her feeds aren't very high yet. So they sent off a ton of blood work looking for infection and we are waiting on that to come back. Some of the lab work did come back and she needed a blood transfusion. So they started that this evening and it is normal for preemies to need this especially if they aren't getting full milk nutrition. Dr. Sidebottom started Caleigh on antibiotics and seems to think that she just outgrew the line. She's more than tripled her size since birth and these things happen. They will want to put another central line in soon and that requires surgery, but until then, they are going to put a pic line in. It is a temporary version of the central line, and it is more prone to infection than the CVL. She needs her fluids and these are the steps we need to take. Now we just sit and wait for signs of infection, necrosis and effects from the fluids leaking into her chest. Hopefully, we won't see any of these signs........that we are just experiencing some growing pains. So Caleigh is now in room 3b where mommy thought she should have been all along.

Caleigh's new room with a view. Yep, that's a window in the corner.

The gauze on her chest is where the central line was. When they go to put a new one in they will have to put it on the other side.

What we would love from everyone is prayers. Thoughts and prayers to continue on. God only gives you what you can handle goes through my mind daily. We still feel strong with only weak moments and I know this is how Caleigh feels too.

When opening my fortune cookie tonight it read: 'Be both a speaker of words and a doer of deeds.'
GOD whispering to me again.

Room 1

With much persuasion from a few parents & nurses Caleigh was moved to Room 1 on Wed. so that she can hang out with her NICU friends. All is well on the front lines. We haven't upped our feeds and Caleigh is still gaining weight at 6 lbs. 3 oz. No spitting to report and the dirty diapers are watery but still coming. Every couple of days the docs send off a stool reduction sample to make sure she is keeping her nutrition in and so far so good. Not much else to report. Eric and I are tired and worn down, but we are still trucking along. I'll post new pictures soon! xoxo

Room 2

Someone should tell our little chunky monkey that it isn't very nice to stick out her tongue!

Early this morning Caleigh was moved to room 2. A set of triplets were delivered and they had to make some room. Yay! We made it out of 3A, aka 'The Chronic Room' were babies stay for a long time. The scenery is different but the room still comes with tender loving care. This doesn't mean that we are on our way out the door, but it is one step closer to home. The surgeons upped Caleigh's feeds to 8ml an hour. She is doing wonderfully and we expect at this rate, at least 8 more weeks until she is getting full feeds and then we will have to master that bottle!

Yesterday, Caleigh got to watch a Baby Einstein DVD in her crib! The nurse said that she was so excited and watched intently the entire time and as soon as it was over she fell asleep. Such big changes this week!

Dear friends of ours at the hospital gave Eric and I a date night at the Mavericks game last night. Courtside seats, VIP lounge, Gold parking and close enough to hear every call, fight, ref and announcer! Mavs won and we had a blast! You can click on the images to make them larger.

Tip off


Sitting soooo close

Can I just say how much I love Dirk! He's amazing!

2 mths, 3 wks, 6lbs

Caleigh holding daddy's finger & watching mom's every move!

Caleigh & Daddy sleeping! Dad would twitch, Caleigh would twitch....Dad would snore, Caleigh would snore! Just joking....Caleigh doesn't snore ...... yet!

This is Caleigh's favorite position lately. All curled up on her belly, whether she is in bed or on our chest, she loves it!
And now a brief public service announcement: Never let your baby sleep on their belly unless they are hooked up to every monitor the NICU has. This is the only reason Caleigh gets tummy time. BACK TO SLEEP, prevent SIDS.

Not much has changed since my last post. Caleigh is still on the 7ml of milk an hour and doing great. There was talk of bumping up the amount today. So we'll see how it goes. The docs have taken Caleigh off of the Reglan (for reflux & tummy motility) because her stools have been really loose and they didn't want her losing nutrition. Other than that things are the same.

Big news........we have a 6lb baby! It's amazing what some milk will do to fatten up a little one. She is really starting to fill out and with each passing day, Caleigh looks more and more like her daddy!

11.01.07 Original Due Date

Caleigh in her Princess Punkin Fairy Costume

Thanks for the costume Ashlie!

Today was Caleigh's due date & it is just amazing to think of all the accomplishments and milestones she has already achieved. She has come so far since birth with the help of prayers, love and positive thinking. We are so proud of our little punkin! The docs have bumped Caleigh's feeds to full strength breastmilk. The next step is to increase the amount per hour slowly. I think progress and updates are slowing down as we take it easy with the feedings & not moving forward to fast.

Yay! Twins Emma and Jenny are doing great. In fact, Emma got to go home yesterday! Hopefully, sister Jenny will be following soon.