A breath of fresh air

We decided to start picking the many weeds that covered the front yard. Eric and I loaded Caleigh up in her stroller and she watched us for a bit.

and then she fell asleep...... I guess we weren't entertaining enough for her.

Things have been relatively quiet lately. We have been holding our breath waiting for Sunday and our trip to Pittsburgh. So far things are still on track and we keep telling Caleigh about a great 'car' ride that she will going on soon. I've been hesitant about our trip and not really sure why. I guess it is probably just the unknown that is getting to me.

Caleigh has been doing well. Eric and I did our first blood draw for Caleigh's weekly labs. Interesting fact...our nurse asked us what we thought her role should be anymore..... We told her that it shouldn't be much. That night, Eric and I did Caleigh's CVL dressing change and noticed a bit of a rash around her g-button and chest area. She has done this before so we started putting Nystatin, an antifungal cream, on it. The rash hasn't resolved itself so we started an antibiotic cream. We are thinking maybe the rash is something bacterial or maybe something contact. We also had to change her line dressing again last night because there was a tiny area that was open. I think all the creams made the tape not adhere well. Lets all hope for a clean, infection free CVL. The rash isn't better as of today so well see.

Caleigh's belly has been up and down with bacterial overgrowth since we left the hospital this last time. Her stools have been really loose, large amounts and she is really gassy, plus she has sweet smelling breath. These are all classic overgrowth signs and she's got'em. So we started the MUD antibiotics back up and hopefully that will nip it before it gets bad. Yesterday we went to the lung doctor, Caleigh did really well when we hooked her up to the oxygen saturation monitor. Despite her doing good without the oxygen, we all decided that Caleigh still needs the oxygen. Mainly for car rides and procedures that are uncomfortable and lengthy. When she isn't crying we can take her off of it, when we think she is content and doing well. We will get to visit the lung doc when we get back from Pitt to reevaluate. Today we all loaded up in the car and went to Caleigh's GI appointment. Same ole same ole, and it looks like we have the go ahead to jump a flight to Pittsburgh. We talked about other hospitals in the country to take Caleigh to for intestinal programs. We talked about cereal and decided to wait until we get back to try it. There are lots of plans, but everything is waiting on our return.

After our appointment, We took Caleigh to the botanical gardens down the street. It was wonderful weather and the flowers are just gorgeous. So here are some pics from today's trip.....I probably won't be able to get on here until we actually make it to Pitt. So stay tuned for updates up north.

Lions & Eyes & Brains...oh my!

Caleigh getting a bath at the hospital, tiny locks of hair stick up with shampoo and we took her oxygen off so you can see her pretty face!

Lets see where to begin...... Ok so we took Caleigh for her second EEG on Thursday morning and then saw our neurologist right after. Caleigh did really great during the test and we were able to hold her this time which made it easier for her to stay still. She did not appreciate the probes being put on her head and she wasn't a big fan of the complimentary shampoo to get the goo off after the test. The tech was a little rough for a spa version of shampooing anyways! This is the first time we have actually made it to the neurologist's office. Every time before we ended up in the hospital and he would come see us. Convenient for us, but it comes with the hospital environment. So I got to see Caleigh's EEG and she is still having seizures in one section of her brain. They aren't hurting her and her development isn't being hindered by them. "It's not the seizures that are the problem...it's the brain"......this is what we were told. We have to watch her to make sure they don't develop into grand mal seizures. Caleigh's last EEG showed indications that they might be going in that direction, but this time around the EEG looked ok and didn't show those previous signs. We're doing great as far as what we can physically and emotionally do for Caleigh to help her development. Her head circumference is below the 5th percentile, which isn't ideal, but it is still growing everytime we see our neuro. So far we are staying on the Phenobarb for seizures and not upping the dose. We are planning to go back for another EEG in about 2 mths.

Physical Therapy and Occupational Therapy have started coming to our house. Early Childhood Intervention, a government program, is slow and overloaded with children and not enough therapists. ECI was so overloaded that they contracted out to Therapy 2000, a private company, to do Caleigh's OT & PT. We will have two visits of OT a week and one visit of PT a week. Eric and I are also looking into alternative therapies as well, but as of now we are so overloaded with appointments that we might wait till things settle down. When the OT & PT came for evaluations, they told us that Caleigh was below the 5th percentile in height and weight, but that her proportions are in the 70% percentile. They also told us that she is developmentally at 2 months old, something we already knew.

Sitting in her decorated stroller, in the hospital, after the March for Babies Walk

On to the fabulous news...... We had an eye doctor appointment today......and.......drum roll please........ 'bang, bang, bang'........

Caleigh's eye's are developing normally! What, our baby has something....gulp..normal! The eye doc said that she has normal baby farsightedness and that it should get better and go away. Most children with this don't even need glasses. Eric and I were worried about CVI, cerebral vision impairment (due to her PVL), but the doc said that everything looks great inside the eyes and it shows no signs of it. The only thing we really need to watch for is if her eyes start to cross a lot, which would be a sign of overly tight eye muscles. It's so weird to hear good news from a doctor. All of our docs give nothing but bad news with the hint of optimism. We really questioned him about our 'abnormal' baby with normal eyes! It's really sad when all I expect out of doctors is some kind of hurdle or hoop to jump through. It goes without saying that we were so excited and the good news really made our day.

And finally, Has everyone seen this? We were on our way to the eye doc and I spotted this mound of metal. Yes, it's a bad drive by pic of the new Dallas Cowboys stadium, aka monstrosity! It's huge...enough said. Plus, I don't get out much anymore!

We're headed to Pitt again......tentatively, May 4th.....we'll see what Caleigh thinks about the new plans.

Babbles

So were a little more settled in now that we have been home a few days. I'm trying to get more organized just in case a week plus hospital stay is in our future again. I think we handled it better this time around, but it still sucked to be at Cooks again. We absolutely hated the surgery floor, and asked not to be put on it again. We had to remind the nurses about med times, and just about everything to do with Caleigh.

Caleigh is doing well. The first evening home she didn't sleep good at all and her belly was getting bigger. Eric and I changed around Caleigh's feeds to 4ml an hour for 5 hrs on and then 1 hr off at a time and then repeat that. This is what we were doing before our little staph break and it seemed to work out really well. We had also put the Reglan on hold while we were at the hospital because Caleigh was having huge loose diapers. The first day we were home she didn't have but one stool and her belly wasn't looking so hot. So we decided at about midnight to start up that med again. Sure enough the Reglan let the flood gates go and Caleigh had about 9 dirty diapers all day today. It finally slowed down around 7 o'clock in the evening and Caleigh acts like she feels really good. So maybe it cleared out what was stuck in there.

Tomorrow, we have another EEG scheduled for 8am and then we will see our neurologist about the results at 10:30am. Hopefully Caleigh's seizures are under control, but I do notice some signs here and there that she is still having a few. Maybe we'll get it all figured out.

I'll try to post some new pics soon.....our little one is knocking on the door of 12 lbs and getting bigger each and every day.

Home Sweet Home

We made it in about 7:30 last night from Cooks. Were tired and Caleigh didn't sleep very well last night. Eric and I have been dealing with appointments, government programs, therapists and anything else you can think of that is difficult today. Hopefully, I'll be able to get on here for a little bit longer tomorrow. Thanks for all the well wishes. Happy Tuesday!

March for Babies!

Caleigh's stroller....and no, Caleigh is not partaking in the delight of starbucks...... yet.

Here's part of the group walking. Check out those t-shirts! Thanks Corrie! and of course thanks to our models :-)

Caleigh's tower. Along the path there were several towers with these banners. Some for babies that beat the odds, some still struggling, and some who's lives were cut short. Thank you to the March of Dimes for letting Caleigh have one of these banners. It truly means so much! (and yes, it says she was born in 2008, oh well)

We got to meet the little girl whose banner is below Caleigh's. She was given a 1% chance to live and now she is a vibrant 5 year old. What a treat meeting her, what a miracle.

Here's our team! What a turn out......this is everyone minus a few stragglers and one very talented photographer. Thanks Kristin!

Candid, huh?

Our team wore feather boas...... Festive and they make a great disguise!
and yes, that's another hospital band (4th & counting)

Mommy & Mimi

A day for the babies.....we came, we marched, we walked, we talked. It was the most perfect weather ever and I'm pretty sure everyone had a wonderful time! The most important thing was the time spent raising money and thinking about the babies just like Caleigh that were born too early or those that were born unhealthy and especially those that were brought into this world as ^angels^. As I looked around at all the strollers and kiddos walking with their parents, it made our journey meaningful. I also thought about all the babies still in the hospital and I hope that they will be able to walk with us next year. Caleigh being one of those babies. It was a day full of laughter and smiles, but with a deep underlining importance.....babies everywhere.
Thank you, thank you, thank you to everyone that came out and walked for Caleigh's team. It was great meeting new people and see everyone join together. Super thanks to all those who donated to our team and the March of Dimes.

It was so nice to see everyone, friends, family, & our NICU family too. I haven't walked that much since I had Caleigh. I don't count walking back and forth to the hospital parking garage any kind of exercise! It reminded me of my running days. At the end of the walk, I was just warmed up and wanted to do more. 10K, 5K, half marathon, marathon......I wanted to take off running! It's amazing how a little sun, some fresh air and exercise can make you feel. I'll have to take Caleigh on longer walks now!

Alright, our little miss had a wonderful day with her daddy while mommy got some sunshine. We had stopped Caleigh's feeds on Friday due to the fact that there was lots of green stuff coming out of her button. She just wasn't ready. So Sat. we started back up at 2ml an hour, 4 hrs on 1 hr off & repeat. This morning we went to 4 ml an hr, with 4 hrs on 2 hrs off & repeat. Caleigh seems to be doing ok with it. This little infection was a blow to all the building up we had been doing over the last few months. Hopefully, we can get back to where we had her feeds soon. The doc changed a few of Caleigh's meds around. No more Reglan, added the antibiotic Rifaximin & probiotic Culturelle. Our dose of blood pressure medicine was upped because Caleigh's blood pressures have still been on the high side. The plan was to send us home on Monday and hopefully we can still do that. I guess we will see how things go tomorrow.

Thinking is Often Worrisome

German Artist Sarah Illenberger
shows off her fancy organ inspired nits
What a Bowel!

So here I am, 4am, searching the internet for successful small bowel transplant stories... Ever since I got the laptop, I've been a researching machine. I told myself that when we get up to Pittsburgh, I will let them give us all the information. The obsessive compulsive in me just isn't letting that happen. I'm sure anyone that has had any kind of health issue, has checked the internet for info. Let me tell you what.....the internet can scare the hell out of you. Why is that? I'm sure Caleigh's blog has scared a few readers along the way. Why is it that when you go searching for the positive you get sucked into all the incredibly sad, negative stories & cases. It's just unnecessary.

Did you know that something like 75% of babies still on TPN after 4 months, die due to complications caused by the necessary evil. Caleigh has far exceeded these odds. One of these complications is liver failure. Her liver levels, the 3 numbers they look at, are now normal. NORMAL! Our doctors are in amazement and so are we. Our GI doc asked if we were praying about it......uhhhh...yeah. Some tiny enteral feeds, a medicine and a lot of prayer.

Did you know that your small bowel is like a starting point for getting sick. If your guts aren't there than the immune system attached just doesn't work. That same strong immune system related to the bowels is the same one that forces most small bowel transplants to reject the host (person getting the plant). It makes this transplant difficult. Often called 'the final frontier' in transplants. Scary, huh?

Did you know that a transplant can cost upwards to a million dollars, and that's just the transplant. There is the medicine and constant follow ups necessary for survival that stick around for a lifetime.

Caleigh has 94cm of small bowel. This is amazing in short gut land. A normal newborn comes into this world with 150cm. Why is her gut not working? Damage from the Gastroschisis and subsequent 6 surgeries. Most likely. It's hard to treat Caleigh's situation. Slow things down from a short gut stand point and then speed things up from a motility point of view. Tons of meds acting against each other daily. It just gets tiresome.

It's just disconcerting to read all the sad stories related to bowel transplant. Here's what I do know. We love Caleigh with all our hearts. She is a strong little girl. We watch with amazement everyday and take the tiniest of achievements with a pound of salt... instead of a grain. We don't know what Caleigh's prognosis will be 2, 4, 7 years down the road. Some of the statistics are sobering and others are encouraging. We sit in a sea of denial, and love our daughter more and more each day. It's hard to think about life before Caleigh. That was then and this is now. Make the most of your situation, no matter how difficult it may be. God has a plan, just because he didn't supply us the cliff notes doesn't mean the story isn't already a classic.

"Life is not measured by the number of breathes we take, but by the number of moments that take our breath away"

Stay Positive, Stay Strong, Stay in Love, Stay off the Internet!

Still paying our Dues

Still hanging out hospital style these days. Caleigh's blood culture is into the 48 hrs of not growing anything. Right now we are still waiting on Caleigh's bowels to wake up and start working again. Yesterday was promising with lots of green bile stools, and an x-ray that looked better than the one we took the other day. She's been tooting the morning away so that is more of her normal. Not very lady like, I know, but we're working on it. I think we are going to try to start feeds today, but slowly get back up to the 6ml a hour that we were at before this whole ordeal. So it looks like were stuck here in hospital land until we get back to our baseline.

Yesterday, out of pure curiosity..... I asked our GI about starting Caleigh on rice cereal?What! I know right, a little over zealous don't you think? He was all for it and as soon as Caleigh is back to her norm we will try it. I'm so excited! She won't be able to eat it by mouth initially. We will put it through her button. Before we do anything by mouth at this point, Caleigh will need to go get a swallowing test done and she will need speech therapy to help her learn how to eat. I've read about SBS kiddos doing a lot better once they started solids. So why not try!

March of Dimes, March for Babies is TWO DAYS AWAY! I can hardly wait! Eric is going to stay with Caleigh (whether that be at home or hospital) while I go to the walk. We really want to take her but it just isn't the right thing to do. Maybe, Caleigh can make it out next year. I've heard our team shirts are looking amazing, and our team has raised a ton of money. Thank you to everyone that took the time to donate. Donations actually come to an end April 30th so there is still time to throw the Babies some moola.

Waiting patiently.....

8 Months

8 whole months! Wow.. We are so fortunate to be where we are today with all the challenges Caleigh has had over the last 8 months. There were good days, there were bad days. We have learned to live each day to the fullest and take nothing for granted. What a little miracle we have on our hands. Here's to 8 more!

On to the miracle.....No more Staph infection! Caleigh's blood cultures have come back negative. So the infection is under control, but we will need to stay in the hospital a few more days to watch things and to make sure Caleigh can start eating again. We still aren't feeding her and her belly sounds are not good. She just needs more time. Caleigh's barometer.......step one, get sick...step two, belly gets huge and we stop feeds. Happens every time, some worse than others and this time was pretty bad.

So we will never know what caused the staph infection. Did you know that 70% of people carry staph in their nose and ears. It's everywhere! Also, a lot of short bowel kids get gut infections and they translocate to the blood stream. Our GI doc was great about easing our concerns. We can't be sure what did it, but the fact that it happened has made us even more cautious about Caleigh's care. I talked to home health (thanks to a good friend) and Eric and I will now be doing Caleigh's weekly blood labs. It is their protocol to not be sterile during drawing blood from Caleigh's line and changing her CVL hub. It's crazy! So now the nurse doesn't need to come out and that leaves one less person that comes in contact with Caleigh's line. I love the 'sign on the door' suggestion and I plan on making a detailed sign when we get home. There are so many people that come and go, home health, nurses evaluating for different programs, therapy crews and then there is all the doctors appointments we go to. I feel like a prisoner in our own home......darn germs.

Caleigh is definitely feeling better. She has been more alert and is back to her home schedule or at least close to it. She is sleeping well, cooing and pushing up when on her belly a little bit more each and every day. Just a cute side note...all the nurses, doctors and just about everyone Caleigh sees checks her lung and belly sounds with a stethoscope. She hates it and screams every time....except with our fabulous GI doc. Caleigh holds his hand and stares into his eyes. She just loves him and so do we.

We have the go ahead to make the trip to Pittsburgh whenever we are ready and I will keep everyone posted on when that will be. Maybe this time Caleigh will want to go with us. I should check Caleigh's schedule and make sure she is available before we make plans......

Don't forget it's the inevitable tax day! Happy filing!

Canceled

Our trip to Pittsburgh is postponed for the time being. Caleigh's blood cultures started growing Staph. It's in her blood stream and right now she is on the right antibiotic to get rid of the infection. It's not the scary staph infection that everyone is talking about (MRSA). We met with a doctor from the infectious disease department and he says that it could take 10-14 days to get rid of the infection. We were told that as far as staph goes, Caleigh has the best one to have. He was also surprised that Caleigh hadn't had an infection before. Thanks to all the sterile techniques of our amazing NICU family we've avoided it up until now. I wonder if I can convince some of our NICU nurses to transfer to home health?

Right now we wait and see if her central line can be saved. I was already a little cranky with the sterile techniques of those that have seen Caleigh while we have been home, but now I'm just mad. I don't care who's ego gets hurt. It's Caleigh's life and that is number one in our book. Hand washing, gloves, masks. Cough or fever or rash.....stay away. I'm just upset and feel like we have failed her in some way.

Like most times Caleigh gets sick, her belly has become distended and we stopped her feeds. Yesterday, we went downstairs for abdominal x-rays and they don't look great, but not too bad.

Who knows how long we will be here at Cooks. They have blood work ordered for the morning and I'm sure we will have blood work ordered for the next morning.

We're exhausted and cranky. Caleigh is very fussy because she just doesn't feel good. It's like the old days of holding her 24/7. We don't mind holding because that is what makes her feel better.

We were supposed to be in Pittsburgh until this coming Friday. They would not have been able to evaluate her anyways because her blood work would have been contaminated. They deal with this sort of thing all the time, so it was nothing new. It was meant to be for some reason. I'm sure we will find out why.

I thought our trip to Holland would be a winter trip, but it looks like we are staying this spring too. I hope the water is warm.

The New Beach Destination

Where am I writing you from....you may ask? Not Pittsburgh!

Caleigh has decided that her new favorite destination is Cook Children's Hospital. Yep you read right......were back. Yesterday, about noon, I took Caleigh's temp. It was 99.6 degrees. I uncovered her and then the ECI people came out to do their evaluation. Around 2:40 or so I took her temp again, when they left, and it was 101.00 degrees.

Now let me explain something here.... normal baby you would call the Pedi and give Tylenol, watch the temp. Any kiddo that has a central line, aka Caleigh, this means serious business and a possible blood infection. A blood infection could mean that we would have to pull her central line, which is considered her life line at this point. Bad News......

Gave Caleigh some Tylenol. I called our GI doc and told him what was going on. He of course said to go to the ER, and after some crazy packing, Eric rushing home from work, my mom holding Caleigh while I accomplished the crazy packing......we finally arrived at the ER about 4:30. Just in time to beat the Friday 5pm rush. It's funny because a lot of the staff remembered us. Especially when we explained that our GI doc is really Caleigh's primary doctor. We got in without a wait and started telling the whole story to everyone that asked. I think I should just give them the blog address! I've actually been working on a medical history summary that we can just hand the admissions people, but I haven't been able to finish with all the admissions we have had to do! Another thing of interest, the ER is swarming with firefighters, all of which are paramedics. Each time we go it's like showing up to a firehouse, it's nice and makes us feel more comfortable and at home about the situation.

Ok, so I got off rambling, anyways they started tests, we did a chest x-ray (Caleigh hasn't kicked the cough since our last visit) and then we waited for our GI doc to come. He came about 7ish and ordered some more tests, told us not to cancel our trip just yet and (most exciting of all) gave Caleigh a new G-button. The old one had been in since January and we had been having so much trouble with it leaking. When he showed up it had started to bleed around the stoma, she was in pain and I told him to please do something about it. He went and got a new size 15 french 1.5cm (old one was 18 french 1.7cm) and swapped it out just as easy as can be. It's the weirdest thing seeing a hole in someones stomach, especially your own child. And presto! Just like that the hole was plugged and NOT leaking a bit! I'm so excited about it I could just scream!

So our doc decided that since Caleigh is medically fragile (one of many labels), he should keep her in the hospital at least until the preliminary results from the blood cultures come back. They did start her on two different antibiotics, Vancomycin & Rifaxin, just in case there is some kind of infection. So the cultures are sent to the lab where they are watched to see if anything bad grows. They come back at 24, 48, & 72 hours. If nothing has grown in 24 hours, which would be 6pm tonight, then we will be discharged and sent off to Pittsburgh. Of course, if something does grow then we will be hanging out at our new destination spot a little bit longer.

My thoughts are that Caleigh hasn't got rid of her cough which makes me think sinus infection or something like that, but with her line we just can't take the chance. Her fever went away by midnight last night mainly because the antibiotics were kicking in. She's fussy and acts like she doesn't feel good, so it's definitely hard to tell what is going on.

*As I was writing, our nurse came in and told us that the preliminary came back with gram positive bacteria. We will still have to wait and see just what kind of bacteria it is that is growing. We're waiting on our doc to come by and give us a game plan. As of now, Caleigh is getting good antibiotics and now we begin the waiting game at our new beach front property.

As soon as we know more, I''ll let everyone know!

Pitt Bound

The Gray Family travels north!

This Sunday, April 13th, Eric & I will be taking Caleigh to the Children's Hospital of Pittsburgh. We will arrive on Sunday afternoon and then check into the hospital Monday morning. After Caleigh is admitted on Monday, the small bowel transplant evaluation will begin. They will do MRI's, CT scans, a complete blood workup, and lots of other fun stuff. We've decided to take Caleigh to Pitt because it is a world renowned transplant center. We aren't even sure that Caleigh is a candidate for transplant, but they have agreed to evaluate her situation. Above all, this is a chance to get a second opinion on that little tummy that seems to puzzle the best.


New doctors, surgeons and nurses. Scary, actually. All of Caleigh's 'team' knows her so well and we know that this will mean stepping out of our comfort zone and trusting a whole new crew. Eric and I have been thinking about this famous 'second' opinion for some time now and we believe that this is a positive move. Hopefully, we can learn more about Caleigh's situation and the possibility of a transplant.

Caleigh has really started holding her head up. She seems stronger and more alert. Caleigh's coos have come a long way and she makes us smile more and more everyday.


Here are some helpful links regarding our trip:

CHP Transplant
I CARE
Intestinal Transplants


Thanks to some generous donations (THANK YOU) we were able to buy a laptop. I'm typing on it right now, laying in bed, watching Caleigh sleep. So hopefully, I will be able to get on here a little more often. Plus there will be lots of updates when we arrive in Pitt.......which by the way is supposed to 34 degrees!

Wish us luck and pray for a smooth transition with answers galore.

Your Thoughts?

Edit: born 11 weeks TOO soon
Thanks everyone!

Help Us Pick the Pic

The March of Dimes, March for Babies is fast approaching!

April 19th in fact.....

If you haven't donated or signed up to walk, please do so asap. You can visit our Team's Home Page here. At the bottom of the team page there is a join option and at the top of the page is a donation option. One day ALL babies will be born healthy.....

'Walk for Caleigh' team captain, Corrie, is planning on making t-shirts for our group. We need to select a picture to put on the t-shirts that represents Caleigh. I of course love all her pictures and I really don't have a favorite. This is where we need your help.......Pick a Pic and help us out!

Should it be a recent pic? Should it be a picture of Caleigh's early days? You decide......

1

2

3

4

5

6

We look forward to seeing you at the walk......

Houston......we have a Totally different baby!

Time restraints for blogging have been very restricted. If were not sleeping were watching Caleigh breathe while she sleeps. Plus all of her daily cares which leaves us with no computer time. So, please bare with me loyal readers.....

Ok, so on to those stories and news I promised so many days ago.....

The biggest news of all:
When I say different, I mean TOTALLY different! Caleigh is almost sleeping through the night and she is so much happier! So much so, that the third day we were in the hospital Caleigh started cooing at us. See the amazing video below! Almost 8 mths of nothing but cries, lessen the seizures and we have a happier, more content baby. We couldn't be more excited about her progress.

Our wild trip to the hospital came to an end exactly one week after it began. Which believe me was long enough for all of us. As I said above Caleigh's seizure medicine, Phenobarbital, seems to be working wonderfully. We take Caleigh back to the doctor for another EEG on the 24th of this month to see if the medicine is working. As far as demeanor, Caleigh seems like a totally different baby. Different cry, different posture, different behavior......Different, but in an amazing way. She acts like she feels so much better. Sleeping like a champ and catching up on all that rest she had lost in the last 7.5 mths. Content not being held 24/7 and enjoying her toys, swing, and bouncy seat. Were just amazed and that's the only way to describe it.

Here's Caleigh getting her first EEG

Here's Caleigh in her hospital bed......sleeping without being held!

About those seizures... The docs seem to think that Caleigh is having Complex Partial Seizures. You can read the link about the kind of seizure, but in a nut shell, we can't tell if she is having one. Typical symptoms include: staring, repetitive motions, saying the same word(s) over and over, and losing consciousness. These are all very hard to tell in a baby. During our research, we learned that a person can have 200-300 of these electrical malfunctions a day. During her 30 minute EEG Caleigh had 3 seizures and they were firing from two different sections of her brain. So this explains a lot of Caleigh's behavioral issues.

Caleigh was on Phenobarbital almost since birth until the end of January. A side effect of Phenobarb is lowering liver bilirubin levels. Once she was taking in enough formula, they were able to take her off the low dose of Phenobarb and start Ursodiol for liver purposes. Phenobarb builds up in the bodies system and tissues. Which to us explains why daily life with Caleigh was just getting harder and harder. The Phenobarb was slowly getting out of her system and the seizures were taking over, full strength. Caleigh still gets upset with tummy pain, but we can actually tell that it is stomach aches now. She hasn't hyperventilated since the day before we went into the hospital. We're just happy that another piece of the puzzle is down on the table and now we can monitor it too.

What's this.....oxygen....at home? Yep, little miss just didn't want to give up her oxygen at the hospital. We're on 1/8 a liter continuous except for bath time. It's just a whiff of oxygen, but when your getting over a cold and your lungs are teeny tiny, you need the whiff. Caleigh has an appointment with her lung doctor on May 5th and then we will re-evaluate the situation and see if she still needs her beautiful, new necklace...no headband.....no earrings...... Whatever it is, it's definitely a fashion statement!

Grabbing Daddy's Beard

Eric and I brought home a blood pressure machine. We take Caleigh's BP at noon and midnight and then give her Enalapril. She was on this med in the NICU so we asked that she be put back on it instead of searching for the perfect BP med again. We now have an Nephrologist, which is a kidney doctor. Caleigh has an appointment with him in two weeks. I think with the seizures under control Caleigh's blood pressure and heart rate have been a lot better, but she is still requiring the medicine.

We got an apnea monitor that we hook Caleigh up to every night that watches her breathing and heart rate, and I'm happy to report that it hasn't gone off once since we have been home. Super!

The oxygen tank, IV pole with three pumps and three bags all attached to tiny Caleigh makes it really hard to get around the house (especially on carpet). I complained about her not being very mobile before, but this is just ridiculous. How many hands does a mom need? Right now I think 6 would do just fine.......

Our first trip outside, and around the block, after we got home from the hospital.

Were Home!

We got in about 7 o'clock last night.

Were trying to get settled in again but we have lots of news and stories to share when we (I) catch up on some sleep.