Change is a Good Thing

Lots happened yesterday, good and annoying. Lets start with the good.....

The surgeon decided that it was time for the contrast study. Yippy! Unfortunately, the order was put in after noon and the Radiology department was already full. Next step would be this morning, but Radiology didn't want to do it this weekend. That leaves us with Monday, and we're ok with that. So until then we are clamping Caleigh's g-button for 4 hrs and then leaving it open to gravity for 4 hrs. This helps drain out the stomach acid that isn't going down. She is still stooling well and doesn't get so upset when she is 'doing the deed' like she used to. We changed Caleigh's Methadone dose to go into her g-button and she should be off of it by Tuesday. Caleigh's two seizure medicines are now going through her CVL because we finally pulled the triple lumen central line that was in her femoral artery. She had started favoring that leg and not wanting to move it much. Plus it was a big infection risk. We are really excited that it is gone and Caleigh seems more comfortable without it. Even kicking her left leg a lot more today.

Here it is. A trophy of sorts. A lot of short gut parents take the old central lines and put them in baby dolls so that the kids have a doll like them. Kinda like American Girl....with a twist! So the triple lumen name comes from the three lines. The very top tip (it's blue) at the end of the cream tube was actually in Caleigh's heart. Hard to believe.....The cream tube is threaded through an artery up to the heart. So the central line that Caleigh has in her chest is very similar, but with just one lumen.

On to the annoying...... and my ever building need to vent. Ever since we had our little chat with the charge nurse about what clean practices we were expecting; things have slowly gone down hill. Eric and I don't get any sleep because we are constantly having to 'police' the nurses & respiratory therapists as to what we are expecting of them. We've stopped medicine mishaps, heparin overdoses, reminding them to wear gloves, etc., etc. The other night Eric woke up to a lab tech about to stick Caleigh for blood work. Caleigh doesn't get stuck with any needles unless she is really sick and they need access. That's one of the fabulous things about having a central line; you can get blood anytime without a stick. We were very angry about this. The night before last, we still had the triple lumen in Caleigh's leg. We told the nurse that we were using that line for medicines. I woke up at 2am and she was giving the medicines through her chest central line. Fine, whatever, but the medicines aren't compatible with her TPN & Lipids. This can cause serious problems. They have the nursing degree, why should we tell them how to do their job! I was pissed and couldn't sleep the rest of the night. Then we have had issues with the social workers. Not so much on the floor but in the ICU. Because Caleigh has Medicaid we are eligible for transportation or meal reimbursement while inpatient. It's not a lot but adds up when your at the hospital for more than a month. We were told by the social worker in the ICU that everything had been taken care of. When we got up here to the floor we asked about it and were told it was taken care of. Long story short....it wasn't and nothing had been reported to the medicaid people. So at some point one of those many things broke the straw on the camel's back. We called the patient advocate service that the hospital has. By yesterday afternoon, we had talked to the nurse manager for our floor and expressed all of our concerns. She apologized for the inexperienced nurses, but made no excuse for the medication problems we've had. She set us up with a schedule of primary nurses (her picks) for the next 2 weeks. The social worker thing is still in the works, but things seem to be getting better. Volunteers stop by everyday to see if I want a break, offering to sit with Caleigh. Not a chance. I'm not leaving her side and even if things were going great I just don't think I have it in me to leave. I know, I know....I'm a total control freak. I think everything that has been going on just boiled up until we popped. If it wasn't for our amazing doctors we would probably be finding a different hospital. Frustration & exhaustion are most likely to blame. We will keep dreaming about being back in our home sweet home. Sooner hopefully than later.

On a side note, I wanted everyone to pray for Carter. He is a month older than Caleigh and lives in the DFW area. I'm pretty sure Carter and Caleigh will be comparing scars very soon! About 2 weeks before Caleigh's surgery, Carter had a Multi-Visceral Transplant in Boston. Carter is no longer a short gut baby! TPN free! He has done amazingly well and looks great. Just recently he has started having some trouble and they are still trying to find out what is going on. They are all the way in Boston, far from home with unanswered questions. Please pray for little Carter, his family & his doctors.

Gastroschisis in the News

I got really excited this morning when I turned on the news and saw a picture of a yellow skinned baby with a NG tube. Not excited because there was a sick baby, but because the headline read 'Bethany was born with Gastroschisis and she may not make it to her 2nd birthday without a transplant.'..........

Awareness. It's that simple. Because of Bethany's family courage to put their story out there; maybe it will spark an interest in finding out why & how Gastroschisis happens. 1 in 5000 births it happens. 9 out of 10 are resolved easily with the initial closure surgery. Caleigh was that 10th baby. Bethany was that 10th baby. Maybe their story will boost child organ donor awareness. If Caleigh ends up needing a transplant it would have to be from a baby the same size as she is. It's hard as a parent to think the unimaginable which makes the donations of organs hard to find.

Maybe I smiled because it was confirmation, in the form of mass media, that we weren't alone. We have known that Caleigh isn't a single case . I read blogs daily of families going through similar situations. The 10th babies all over the world. Babies with other conditions causing short bowel syndrome. Those blogs and families give support, hope and education when we feel like our family has been living in a bubble for the past year. It's like an online playgroup of sorts. We may not be in the same park, strolling our babies on a path, but our minds & hearts are on the same journey.

Baby Bethany Dawson needs a bowel and liver transplant. She was born with Gastroschisis, the same as Caleigh. Her family lives in the UK & she just celebrated her 1st birthday. She is absolutely adorable. Bethany's family started a Facebook group to raise awareness for Organ Donation. The response to this group (30,000+ members) made other media authorities aware of their story. You can read her story here. I'm certain Bethany will receive her gift of life. God Bless this little baby.

20 days & Still Counting

A dear friend of ours made Caleigh this beautiful hat. I think it is absolutely wonderful & it really brightened our day! Adrien is an artist in many ways. So Talented! You can check out some of her designs at http://apmDesign.supermarkethq.com.

Today is Tuesday, and for the first time in probably 7 months, Caleigh fell asleep laying on my chest. She has never been comfortable with her belly on anything. I was so excited and savored every moment of it. I guess I had just given up on the idea of Caleigh snuggling this way. So to all the parents out there, don't take for granted the snuggling of your sweet baby to your chest. It's something you will miss when it's gone and love with all your heart when it returns. I'm just beaming.......

Medically we are still at the wait and see stage. Caleigh has been dishing out the poopie diapers 3-6 times a day, but her g-button output is still to much to start feeding her. We're still working on weaning off the methadone. Close but not off it yet.

Yesterday I went home and trudged around the empty house. Empty and quiet. I was supposed to go home and sleep.......yeah right. After watching all the recorded episodes of John & Kate + 8 on our DVR, doing a few loads of laundry, & playing with the highly neglected dogs. I decided that I would try to take a bubble bath. Then I got the crazy idea to make myself a homemade facial. After scrounging through the cabinets all I came up with was honey. So I put a mask of honey on, lit some candles, poured three year old bubble bath (does that stuff expire) into the hot water. Jumped in and the hot bath felt amazing......except for the honey dripping down my face! It seems that the hot steam from the bath melted the honey off my face. Rinsed off the honey, tried to relax. I tried, but my mind just couldn't shut off enough to enjoy the moment. Finally gave up and got ready for bed. I slept a whole 11 hrs and didn't wake up once. Maybe the bath did the trick.......

17 days later

and we are doing great.

Caleigh is still off her oxygen and breathing wonderfully on her own! She gets 3 breathing treatments during the day now and we're hoping to drop a immediate doctor by the time we leave the hospital. Maybe our lung doctor will be one of the people that we only visit once a year.

The verdict is still out on Caleigh's high calcium levels. It has been completely removed from her TPN and they will check her levels again tonight. We are waiting on bloodwork to come back on a test for hyperparathyroidism. Something we don't want Caleigh to have. Maybe it was because she was immobile for so long. Maybe Caleigh is growing and her body is pulling the calcium from her bones to help her grow. We don't know. Hopefully, we can figure it out soon.

Caleigh is still just on the Methadone and Clondine patch. Her Methadone is being weaned by .2 daily and at this rate we should have her off of it by this coming Wednesday. The Clondine patch is actually a blood pressure medicine and not a narcotic. Because Caleigh has high blood pressure anyways, she will stay on the patch and probably go home on it. The patch helps with anxiety and similar symptoms related to withdrawals as well.

It's amazing.....Caleigh is only on 4 medicines right now if you count the patch. When we we're admitted to the hospital Caleigh was on 13 medicines at 24 doses a day. Our day revolved around medicine time. I'm pretty sure we will go home on more but for right now things are relatively quite. I did talk to the GI doctor about only introducing one med at a time if they think she needs something. That way if it doesn't seem to work or she has a reaction we will know what causes it. I think that is the plan.

Fireworks from our window tonight. The Gray's will have a prime fireworks watch spot if anyone is interested on the 4th!

Caleigh had another good stool today. We clapped and sang and did a little yippy! A sign things are waking up, but we are still waiting on the output from Caleigh's g-button to slow down. This would mean more is going through instead of coming out. We are still anticipating a contrast study some time this week.

Overall, Caleigh is feeling better. She has been smiling at us a bunch and mainly just seems more content instead of drugged up with medicine. Caleigh has also been sleeping really well at night. Odd because they do come in and out to take her temp and check her blood pressure, take blood for labs and give meds. We'll take it and Caleigh definitely needs the sleep to heal.

Caleigh weighs 14 pounds 2 ounces & is 24 inches long as of today.


This was the sunset view from our room tonight. Really serene. Everyone that comes into our room comments on what a great view we have. It's a big deal if you don't have to stare at another building from your window. One of our doctors mentioned the Feng Shui of the room helping with healing. Caleigh's Popaw said why not? We've already tried everything else! Feng Shui or not Caleigh seems to enjoy the sunlight. Eric and I definitely do.

Day 14 Much Better

14 days since Caleigh's initial surgery and she is doing a lot better. I think we are finally getting some much needed rest now that we are in our own room even though there is a constant parade of nurses and doctors in and out.

Eric and I had a heart to heart with our charge nurse yesterday morning. We asked that it be put very clear on Caleigh's card-x (chart) that we want the cleanest of practices around her. We asked that everyone wash their hands as they enter our room and as they leave, always wear gloves to do anything, use Caleigh's own stethoscope when listening to her, use alcohol wipes on everything, and when doing blood draws for labs they must do the process sterile and change the hub after each draw. We also asked for continuity with our nurses. The charge nurse was very nice and said that if we had any problems to please let them know and they would take care of it. The first night we were in our room it wasn't the best. So it's been so nice not having to correct everything the nurses do from the moment they walk into the room. They know what needs to be done and how it needs to be done and they have been great so far.

Yesterday, Caleigh received a blood transfusion of packed red blood cells. Her blood count had been slowly trickling downward. The thought was that her respiratory rate being high was because she didn't have enough red blood cells to carry the oxygen through her body making it harder to breathe. So as of today Caleigh's respiratory rate is much better and she seems to be feeling much better. Problem solved for now.

i.e. Thank you for all the suggestions on Caleigh's breathing that everyone sent us, we discussed them with our doctors and they appreciated the challenge!

The next challenge to overcome is a high calcium count. No one seems to know why it's high because Caleigh's other blood work is great. We are thinking it might be from one of the medicines. I've been researching, well see what we come up with.

Caleigh's incision isn't for the squeamish, but it is healing nicely. In the next 10 days or so the surgeon will remove her stitches.

Oxygen......what oxygen? We have had Caleigh off of her nasal cannula all day today and she has done wonderfully. We don't plan on putting it back on unless her oxygen saturation gets below 92, but all day long it's been 96 or better. We're so proud and so excited to see those beautiful cheeks!

Caleigh's pain management doctor has been coming by daily and so far we are off the morphine and versed and probably by tomorrow the valium will be stopped. Which leaves Caleigh on methadone which will take a little bit longer to wean. Caleigh seems more comfortable and she isn't hurting in between doses as much as before.

And the best news of all.....I can't believe I waited this long into a post to type this.......Caleigh had her first poopie diaper since surgery! It's a sign that things are moving along and we are so excited. Yes.....we are still super stoked about dirty diapers. That's one thing that hasn't changed in the past 10 months.........

A lot of people have asked about Caleigh's future with eating and foods in general. Right now we aren't feeding her anything until we do a contrast study to make sure there aren't any leaks. As far as the future goes, it is unfortunately still an unknown at this point. We are praying that Caleigh is off TPN by her first birthday, but we just don't know what will happen. This is a 'what if' scenario.......if and when Caleigh's small intestines work correctly and we are able to advance her feeds to enough calories per hour to sustain weight then we will try to bolus or feed every 2 to 3 hours, like a normal baby. Then we will try to introduce solids in an order that is right for her intestines to absorb the nutrients. This will all be done through Caleigh's g-button, everything pureed to liquid form. At some point we will take Caleigh to do a swallow study to see how well she can swallow liquids. If she does well we will start foods by mouth but Caleigh will need a lot of speech therapy to help her overcome her oral aversion. That is a 'what if' situation and I'm sure it won't go completely as planned. Caleigh will always have issues with food. On what level we aren't sure, but as for right now, we are all praying for birthday cake in celebration of Caleigh's 1st Birthday!

On the Floor

We finally made it to the surgical floor this afternoon. 12 days in the PICU isn't all it's cut up to be and we are glad to be in our own room.

Do you hear that?...........Quiet...that's what Caleigh and I hear right now and it's the most blessed sound possible after the last 12 days of nothing but noise. I think the noise is a lot of the reason Caleigh hasn't been sleeping. She's so jumpy with the withdraws and any little sound would jolt her out of sleep.

The increase in medicine has made a big difference in Caleigh today. Well, I don't know if it's really the increase or if it's finally catching up to her. Caleigh didn't need any morphine or versed during the day today which is a good sign. She seems to be more restful and sleeping a little bit better. Caleigh's respiratory rate is still worrisome for us. Right now as I look over at her monitor it reads 111 breathes per minute and she's fast asleep. This is not normal at all but at the same time her heart rate isn't too high. It's just a puzzle that everyone seems to be blaming on the withdraws.

So with all of these issues we had the choice to stay in the ICU or move to the floor. We chose to move because the past three days weren't getting us anywhere but exhausted and frustrated. Caleigh was at a place this morning with her pain meds that we felt comfortable enough that she was getting what she needs. During morning rounds we asked who would be following her pain and withdraw meds when and if we moved to the floor. You should have seen their faces! Uhhhhhhh..... they had no clue! Surely our surgeon wouldn't be responsible? So Eric and I asked that a pain management doctor follow her medicines and help to get her weaned off of them in a timely manor. They quickly agreed and then threw in the towel on trying to 'fix' the complicated child. Not really, but you could tell that they were tired of telling us that they don't know why Caleigh is breathing so fast.

Caleigh's blood cultures that were sent off when she was having a fever are all still negative. Fever can be a sign of withdraw too. We're really happy that so far infection has stayed away. She is still on the oxygen too. Every nurse that we have either tries to turn it up to 'help' with breathing or turn it off. We explain that our lung doctor likes it just the way it is and he is the one making changes. Caleigh also has been getting breathing treatments every six hours to help open up her lungs. From the lung point of view things are looking great. Caleigh's bowel sounds are still really quiet. Things just haven't woken up yet and all the pain medicine slows the gut down anyway. We're waiting on the classic signs that things are ready. Drainage turns clear, stool or smear, and clear bowel sounds. Until these things happen we will just be holding tight.

So here we are tucked away in our own room. Eric actually came up to the floor and scoped out the best room available before our nurse called up. We have a nice view of the west, a recliner rocker that actually works and two large windows. It's our 2008 summer vacation destination, so of course we would only want the best!

Feliz Dia Del Padre

Today was Father's Day, Caleigh's 10 month birthday and a day filled full of withdraw drama.

I didn't remember giving birth to a horse, but apparently that's what we have. Caleigh is on one medication after another and nothing seems to be cutting the edge. We have upped the Methadone, Valium, added a clonidine patch and are now giving Morphine and Versed in between to help the withdraws. Caleigh hasn't been sleeping again and seems to be getting used to all the meds. We just had night time rounds and they upped all the medicine again. It's so frustrating to be on 5 different meds just to get off of 2. It makes no sense to me and Caleigh's discomfort just seems so unnecessary. Uggghhhhh!

Another problem we are having is Caleigh's respiratory rate. It seems the more unstable her medicines are the higher her breathing rate is. With the upped dosage of medicines she is doing much better with this. We are just worried because she has been breathing so fast for the last three days. Caleigh is still on the nasal cannula with a 1/4 of oxygen. Her oxygen saturation has been 97 to 100 on this, with 100 being perfect. Everyone seems to be pretty sure she doesn't need the oxygen, but for right now with her breathing being like it is, they want to leave it for comfort more than anything.Eric's first Father's Day was full of worry. He just wants his little girl to feel better. What a good husband and daddy he is. I'm so proud of him. I beam pride when talking about what a good daddy he is to Caleigh. I always knew he would be a good father. It's hard for men to handle a situation like ours. Lots of men run in the other direction, but not our guy. When Eric and I first found out that Caleigh would be born with Gastroschisis; we made a pack to stick it out, communicate and offer each other the support and time needed to deal with something like this. Our little agreement has worked. Eric is our rock and Caleigh and I couldn't do this without him. I love Eric more than ever, and I know for a fact Caleigh has him wrapped around her little finger. Such a daddy's girl.......

Here's to my dad. The strongest, sweetest, most caring man. Always doing anything for his family. Even letting me drag him around Vegas in 90 degree heat! I love you Dad!


And on Caleigh's 10 month birthday, I think back. Back to the almost 7 mths in the NICU, back to the first night home, back to our recent trip to Pittsburgh. Back...... I can't think of my life without Caleigh. What a dramatic, powerful and inspiring life Caleigh has already led......

No Sleep = No Blog

Googly Eyes from all the medicine

For the past 48 hrs Caleigh has been having withdraws from her pain medications. Right before they took the vent tube out her pain meds were turned off so that she would be awake enough to breathe on her own. It worked and then they started a small drip of morphine for her pain. From 8:30am when she was taken off the vent to 8:30am the next morning Caleigh had slept a total of 3 hrs! Wide awake, wired and if she did dose off she would jump at any little noise she heard. Not to mention there was a new patient admitted next to us that night and all the lights were on and it was very noisy. So when the doctors made rounds that morning, and I looked liked I hadn't slept in 24 hrs, they started Caleigh on Ativan and Methadone. Which should help the withdraw symptoms......but Caleigh seems to be allergic or had side effects from the Ativan. The first time we gave it, it was in coordination with other meds so we didn't know what caused her symptoms. Caleigh's respiratory rate went crazy, breathing over 100 breathes per minute and she started shivering all over, trembling. The second dose that was given was alone and she had the same reaction. So when night rounds came we decided that Ativan wasn't the drug of choice for our little princess. They upped the Methadone dosage and started Caleigh on Valium. We've had to up the Methadone dose once again and they lowered Caleigh's Morphine drip to try to get her off of it. It's a pain management balancing act. Caleigh won't be allowed to move to a room on a Morphine drip but she can leave the ICU on Methadone & Valium. Eventually when she isn't in as much pain they will start to wean her pain meds all together. Caleigh's pain tolerance, like many short gut kiddos, is really high and the same med dose that works on one kid doesn't work on Caleigh. She needs a lot of sedation and pain medicines and it just seems to be getting worse each time. It was really hard to see Caleigh in pain like that. It's a horrible thing to go through withdraws and I wish she doesn't have to experience it. We are told that this is normal, but why does it have to be?

So on top off all of that, Caleigh was moved off of the high pressure nasal cannula and moved to just a regular cannula with one liter of oxygen. Getting off the high pressure cannula was another criteria for moving to the floor. We are slowly weaning Caleigh's O's and hopefully we can try to get out of the hospital without a bottle this time around.

Caleigh seems to be heading in the right direction. She is feeling much better tonight and getting that sleep that she missed out on. So I think we will be able to move to a room at least by Monday.

Visiting and the such.....
I've gotten a lot of messages about visiting us at the hospital and we would love to have the company. Visiting hours are from 9am to 6pm. People ask us about food all the time, and yes, we love food and a home cooked meal is our favorite. Although we aren't that picky as long as it doesn't come from the cafeteria! Being in the hospital for almost a year really does make a hatred towards cafeteria food very apparent. No you don't have to bring us food to visit either. Just your company is fine. As long as you aren't sick or don't have kids that are sick we would love to see you! And we ask that you don't bring your children. I can't wait for the day that Caleigh can play with kids but for now we are just trying to keep her healthy. So if you want to stop by just give us a call or email and we would love to have ya.

One Week Post STEP

It's been 7 days since Caleigh's initial surgery and she is doing great. Her belly is the flattest it's ever been.......I think she might have received a tummy tuck!

This morning at 8:30 Caleigh came off the ventilator and onto a heated nasal canula. Right now she is at 30% oxygen and her last blood gas was great. They might remove the arterial line, used to check bloodwork, tonight and then we will be able to hold her. Caleigh still has a catheter for urine and a central line with three lines coming off of it in her thigh. Those two things will stay until we are rolling out the door to go to our own room. She is still on a morphine drip and we are watching to make sure that there aren't signs of withdraw since they lowered her amount dramatically so that she could get off the vent.

We haven't heard any cries yet just whimpers and lots of lip puckering but no cries. Caleigh is still really hoarse from the vent. The Respiratory Therapist pulling the vent tube out forgot to deflate the balloon on the end of the tube. Eric tried to stop her but it was too late. Hopefully, the fact that it came out easily meant there wasn't any damage, but it can definitely cause harm to the vocal cords. We told the ICU doc what happened and he apologized. What else is there to do but wait and see?

Today we had to do more blood cultures because Caleigh had a temperature of 102F. The fever showed up after the vent came off and she was working really hard to breath on her own and after all the pain meds and sedation had been turned off. So those could be the cause but at the same time Caleigh had an open wound on her belly for 5 days and that is a definite site for infection. Caleigh has been on antibiotics since the night before surgery so if something comes back positive they will have to adjust the antibiotics to treat whatever it may be.

We're probably looking at a few more days in the ICU. The end of next week we will take Caleigh for the routine contrast study to see if there are any blockages or leaks in her bowels.
At this point we have 'new' intestines. There is no looking back once you staple the intestine and re-shape it. Everyone is so hopeful about the possibilities of 200+ cm of small bowel. So we have new intestines and a new start. Not a problem if it works and that's what we're praying for.

It's exciting to have a plan and to be past the events of the last week. No looking back.....only leaps and bounds forward......

Successful Closure

The procedure only took a grand total of 20 minutes, but the hoopla leading up to the event was a welcome site. All of the anesthesiologists know Caleigh now and they are super prepared for anything she may have to offer. Before they would even take her out of the ICU they ordered two units of blood, plasma and platelets. They gave her an extra IV on her foot, just in case. I bet there is a picture of Caleigh in their break room with a caption below reading non-compliant. Better to be prepared.

Caleigh is still on the ventilator and still heavily sedated. Possibly tomorrow they will start the weaning process, but for now she needs her pain meds.

I miss hearing our little girl cry. Caleigh cries a lot. It's just a way of life for us and I miss it. I miss the smiles and everyday things that seemed like a hassle. A hassle that we had just gotten a hold of and figured out. The routine I miss. I miss holding Caleigh and kissing on her. Caleigh I miss.

Closure Day & EEG

Today is the scheduled closure day. Our surgeon is supposed to take Caleigh to the operating room and close the opening in her tummy. We don't have a time for this yet. So my next post will have details of how it went. Were looking at 15 to 30 minutes for the closure and then they will start to wean Caleigh off the ventilator as soon as she comes out of surgery. Caleigh's ventilator fighting skills are getting better so getting off the vent will be good for everyone's nerves and Caleigh's comfort.

This morning Caleigh had her third EEG to check her seizures. Eric and I have been noticing a shiver or cold chill like motion in Caleigh recently. It only lasts a few seconds and it really does look like a cold chill but they come in clusters of 5 or 6 usually after she wakes up or is tired. Caleigh's EEG went well and our neuro docs came by during the test and looked at the computer while the EEG was going on. They said that they expected it to look worse (always the optimistic Neurologist) but that it looked about the same as before. We were concerned about the shivers and a type of seizure called an infantile spasm. As of right now there are no signs on the EEG that they are happening. We pray that they don't happen....ever.

I am always worried about the seizures and Caleigh's state of mind. I know that after the bowel problems are repaired, solved and in the back of our mind as a painful memory; the seizures will always be there. It's just a fact, but we refuse to accept the debilitating scenario suggested by many of our doctors. Scientists of the medical world, they may be, but we are Caleigh's parents and can see the potential beaming from her eyes everyday. She will succeed. She is and will be great. She will change the world. She has already changed so much and so many.

Day Four

even better than
day three

Caleigh is starting to look like herself again and everyone is so proud of how well she is recovering. Yesterday, they decided to give her a drug to help her circulation because Caleigh's hands and feet were a bit chilly. Because of that drug her blood pressure was pretty low all day. Another balancing act but she did fine. This morning Caleigh woke up quite a bit and has started breathing over the ventilator and fighting the tube. We're waiting on the decision on when to close her tummy back up. I got a peek at it yesterday and from mom's point of view it doesn't look pretty, but from a surgical stand point it looks really good. The sooner we close the belly the sooner Caleigh can get off the ventilator. All of this is up to our surgeon and we should have a better plan some time today.

Yesterday and last night was pretty boring and again such a blessed thing. Eric got to run home for a bit and I think today I will try to sneak out for a few hours. I haven't left the hospital in 6 days so I'm slowly getting cabin fever. Thank goodness Cook's has a Starbucks!

Day 3

Day three after surgery and Caleigh is considerably more stable.

Today's focus was weaning Caleigh off of all the heart medicines. She was on 4 different kinds all trying to keep her little heart pumping. This afternoon, about 5pm, the last one was turned off and what a relief that was. Caleigh was started on some Lasix's, which help her kidneys go into overdrive to get the fluid off fast. It's working and her urine output is definitely up. Her swelling is down a tad from yesterday. All good news.

They turned off the paralytics that made her not fight the ventilator. She is still getting morphine and a sedative to keep her comfortable, but Caleigh has wiggled a few times. She is still letting the vent breathe for her and it's better that way so that she can rest and heal right now. Her heart rate is now down into the 120's when she is asleep, which is normal. Blood pressure is even better than normal. Again, all good news.

We sit and wait letting Caleigh rest and heal as much as possible. Today has been a quiet day and for that we are thankful.

no good, terrible, horrible, bad day.......

......with a good finish.

At 2am Caleigh's body started the usual shut down mode. This time it was worse than ever. She lost her periphrial IV access due to the swelling. So while they were trying to stick her everywhere.....and I mean EveryWhere; she wasn't getting the meds and fluids needed to help her little body. Finally, it was decided that she needed another central line called a perc-u (sp?). I've seen this done on several babies in need of access in the NICU and with Caleigh's swelling we were pretty certain that it would be almost impossible to get. By the grace of God the doctor got it on the first try and was quite amazed that she actually succeeded.

Before

By this point, Caleigh had no urine output for about 8 hrs, her kidneys had shut down. All the fluid was building and building and nothing was coming out. So they had to stop giving her fluids except a marginal amount of saline.

.....and then it started....by 8am Caleigh was moved over to the oscillator vent at 100%. Her body was so tight that the pressure dressing used for her incision was starting to tear the skin on her belly. By then Caleigh's body had a dusky gray color to it, no more pink baby. Even worse her extremities had started to turn purple, charcoal, black in color. Caleigh's body wasn't getting enough oxygen circulating. Her limbs were cold, so cold that when I held them trying to warm them up, they made my hands cold. Meanwhile, her blood pressure was all over the place, up and down. Caleigh's heart rate stayed above 210 for most of the morning, which is obviously not a good thing. Because of the dreadful swelling, Caleigh's heart was being crushed. She wasn't pumping well and her monitor rhythms were showing distress in the right chamber. They started epinephrine to help the heart muscles pump harder.

Caleigh looked like she did the moment she stopped breathing in her car seat a few months back. Terrible color and tongue fully sticking out. Terrible. The rush of emotions began. This is the point that we started to freak out. Since the beginning of the week we have been telling every person we saw how Caleigh acts up after surgery. How she swells. How she needs the oscillator. How she is a drama queen. Laughter is the best therapy. How this has happened before. How we are READY. Well I wasn't ready and I'm not. Horrible thoughts flew through my head. How could this be. Could this be it. Why. Thoughts of that little girl in the ICU, last time we were here, wearing her beautiful christening gown with family parading through to tell her bye. Yuck, stop it, get a hold of yourself. After almost 10 months, the bad thoughts finally set in hard. I've always had the occasional bleep of a fearful thought, but nothing like this. Lack of sleep, worn out and more in love with Caleigh than ever before; produced a fear like no other. And then there was peace & prayer.

So our neurologist, pulmonologist, pediatrician had come by to check on her. Not much they could do but wait. Then our surgeon came to check on Caleigh and it was decided that she had abdominal compartment syndrome. This is basically where the fluid & swelling is so severe that all the organs start to shut down and all the blood vessels (aorta) are smashed allowing the extremities to lose circulation. The next decision was "what to do?" We all agreed that she couldn't go much further like this. So Caleigh was scheduled to have surgery again (Lucky # 8) in an hour. They elected to do the surgery at Caleigh's bedside in the ICU because she wasn't stable enough to be moved. Then the circus of surgery people came and set up a sterile field. Moved in tons of equipment and then our surgeon came to talk to us about the risks. All bad of course but this was necessary. In all we were out of the room for about an hour. The surgeon went and opened Caleigh's incision, applied a material that will grow with her tissue, put a medicated cloth like material over that and then left her open. He did pull out about 12 ounces of fluid from the abdominal cavity and peeked at Caleigh's intestines, which looked good.

on to the pleasant finish.....

After

When we came back into the room, Caleigh was pink again and they were switching her back to the conventional ventilator. Blood pressure was more stable than before and her heart rate was down to the 170's. She started having large urine output and her heart rhythms were normal. Caleigh's extremities were warm and pink again which was just amazing. The nurses had cleaned her up and of course gave her a pink bed & bow to match the nice pink color of her skin. Caleigh's strength is just a wonderment. I don't know how she does it. Such a fighter and a miracle.

We are relieved and optimistic that this will help her recover faster. In time the surgeon will have to take the outer skin and pull it together, and then staple or stitch the area closed. It will be more than 2 weeks before they try to feed Caleigh and now maybe longer due to this. Our ICU stay could be longer than anticipated, but with Caleigh we should learn not to anticipate much of anything normal.

Amazement & Wonderment, anything but normal.

I know I always say it, but Thank you for your thoughts and prayers. They provide peace to Caleigh, Eric and I during this exhausting and trying time. Please Keep them coming.

Lucky #7

So here's a run down of what happened during surgery.......

Eric and I took Caleigh down to surgery about 8am. They took her back at 9am and didn't get started until about 10:30. Our surgeon gave Caleigh a new and improved CVL line, but used the same hole as before. Yea! No new scars! After that they opened her abdomen and started to cut away at her small intestines that adhered themselves together again. When they got that done they took a measurement of .......... 166 cm which is up from 94 cm in December. Ladies and gentleman that is a normal length for a newborn baby! So then the proceeded to do the STEP procedure (watch the video only if you have a strong stomach) In total 33 staples were placed giving Caleigh a total small intestine length of (drum roll, please)........ about 225-285 cm! Caleigh's belly is the smallest it's been in a long time. During this amazing feat Caleigh lost a lot of blood. 3 times her body's volume. She's a big fan of the blood products and this time is no different. On a side note, thank you.. thank you... thank you... to everyone that donates blood, platelets and plasma. I can't even count on two hands and ten toes how many times Caleigh has needed those. A huge thanks goes out!

So then they started on a stricture section of Caleigh's colon. In total they removed 6cm of transverse colon, this section was tiny and had probably (in theory) been injured in the womb. It just never grew, so hopefully with the removal of it we can start passing food through with ease and not backing up. Finally, they did a liver biopsy. Caleigh's liver is still green in color due to the bile, but they tell us that the appearance is usually the last thing to come around when the liver regenerates itself. We should have results in a few days from that.

Caleigh got out of surgery about 3:30 this afternoon. She did ok throughout the surgery and her vitals stayed stable. When they went to move Caleigh to the ICU her blood pressure dropped and they had to do a lot of scrambling to get it to an ok level. Her color was really pale and dusky. Not good. As of right now she is still getting assistance with her BP and it isn't really as stable as we would like. She did this last time too, so nothing new here, but nonetheless still scary. It has taken a long time for Caleigh to respond to the pain meds that they have been giving. We told her to be strong, a fighter, use that temper for good all before the surgery.....she did and continues to show that resistance. She has finally calmed down and I think we have all come to the conclusion that Caleigh has a really high pain tolerance and medicine intolerance. She's on high levels of fentanyl and I think they are going to switch to morphine as soon as her blood pressure is more stable.

Caleigh's on the conventional ventilator and everyone is anticipating the need for an oscillating ventilator, or high frequency, in the next 24 to 48 hrs, just like last time. We are hoping she doesn't need it, but the blood loss and replacement, mimics the Dec. surgery, meaning Caleigh will start to swell from all the fluids.

The vent tube (et) had to be replaced about an hour ago because the RT accidentally cut the ballon while trying to cut another section. Caleigh did great through this.

Please keep those prayers coming. We've told Caleigh that all her family, friends and fans are rooting for her. These next 48 hrs are important and crucial. We're praying this surgery is lucky #7.........

from the waiting room

So far Caleigh is doing really well. Our surgeons successfully re-threaded her CVL line. It's in the same spot but placed deeper. They started working on the intestinal adhesions about an hour and a half ago and they are pretty extensive adhesions again. Her bleeding is under control and she is handling the surgery well. We were told that the surgery is expected to take 5 hours. Were coming up on hour 3 right now. They are being cautious and prepared. When we were admitted yesterday, they did bloodwork, ultrasounds, and we met with all of our doctors. I think everyone is on the same page. We are all optimistic that Caleigh will do much better this time around and she is already proving us right!

Thank you for all your prayers and well wishes. We will update as soon as we can.

Cheeky

Caleigh w/out her oxygen.......haven't seen that in a long time! Hopefully we will be coming home from the hospital looking like this.

Caleigh's new cry face......the lip pucker gets bigger & bigger everyday. Little Miss has a huge temper.

At the Pulmonologist.

Today we are going to the GI clinic to talk about the surgery and get everything settled before we are admitted tomorrow. Lots of laundry, packing and hopefully a good nights sleep in our own bed before the marathon hospital stay.

3 days

isn't just a Pat Green song, it's also the amount of time until Caleigh's next surgery......

Our nursing home trip went well. No big surprises. We finally made it back home about 2am and Caleigh slept the whole way.

I talked to our surgeon last week, and it was decided that we should admit Caleigh the day before her surgery to switch her meds to IV because right now she gets all g-button meds. Plus she will need to start clear fluids and he wants to do some blood work before the big day. So we will be checking into our new summer destination on Wednesday morning. It's another day in the hilton, but oh well.

Tomorrow, we have a respite care company coming out to evaluate Caleigh. It's required 24 hrs after we stay in the nursing home. Caleigh qualifies for a lot of respite care but I don't think that Eric and I are ready to leave Caleigh with anyone. She just has so much going on and it's hard to 'let' go and trust others at this point. I do have dreams of laying & playing on the beach with my darling husband while Caleigh is playing hard at her grandparent's house. That will all come in time, maybe sooner, maybe later? Who Knows..

I finally got to have a girls night out and what did we do? You guessed it....... Sex and the City. It was good, really good, but I'm sad that it is over. They could have made 3 more seasons out of everything that was crammed into the movie. I want the seasons. Sigh.

I have lots of adorable pictures that I need to post....