Mommy is still sick. Yesterday her whole voice was almost gone!

I went to the orthopedist today. We got some news that we really didn't expect. My hip IS NOT dislocated! YIPPEE!! He said that little almost five-month-olds like me are pretty tricky with hips and sometimes positioning will make them appear dislocated. He said he can't guarantee that my hip will stay in place, but at least it looks good for now. :o)

As for my feet, well, that's a different story. I actually only have one clubfoot, my left one. My right foot has some big long name that Mommy can't remember. She only remembers "congenital" at the beginning of it. Which "congenital" means I was born with it. My left foot is clubbed so tightly that the doctor said that putting it into casts would do more damage than good. He said the skin on my feet and ankles is very tender and soft and putting it in casts wouldn't be good. Besides, it wouldn't be good to force my foot one way when my bones want to go the other way. As Mommy suspected, my left foot will have to have surgery someday.

Mommy expected me to get a cast on my right foot. She had already planned to pick yellow, as my Easter dress is yellow and she wanted them to match. WRONG! My right foot has to have surgery someday too. :o( The doctor said casting that foot wouldn't do any good because it would just fall back to its original position. (Mommy doesn't really understand why.) The doctor was very nice and said that he didn't want to do anything to risk my life. He said that I have already beat some numbers because I am almost five-months-old and still going strong. He doesn't want to do a surgery that will put my life at risk - which you all know what my heart thinks of surgeries! YIKES!! Anyway, he said that when I'm a big girl, if I can show him that I am going to walk, he will fix my feet. :o)

Now, of course, since my hip was good, that doesn't mean we can have all good news... Mommy had noticed that my leg between my knee and my ankle looked "funny". It kind of has a swoop in it. The doctor noticed it too and noticed that my knee will pop right out of socket! He said that is really bad for my ligaments and tendons, even if I like having my leg that way. When I start physical therapy (hopefully next week) my therapist has to make a splint that will keep my knee bent at a 20 degree angle. Also, the splint will run down to my foot (which is conveniently the left one) and will splint my foot a little to try to curve it back in the right direction. It won't correct the club, but it may make it where Mommy could get a shoe on my foot - if my feet would ever get big enough for shoes!

That's about all for my doctor visits. Thanks for praying for me!

Love,
Carleigh

Hi Everyone! This is Carleigh! My mommy usually does the updates, but she is sick. She has a really bad sore throat and has almost lost her voice, so I get to do the talking. :o)

I went to the doctor yesterday. I weigh 8 lbs. 4 ozs. and am 22 inches tall. I didn't get in trouble for my weight this time. The doctor said I am gaining a little or at least maintaining and the doctor said I was a pretty pinkish color, so she's not going to worry about me. Whew!!

Also, I got my second round of immunizations. I was so little and cute that the nurse didn't want to give them to me. She didn't want to make me cry. She finally gave them to me, but I only cried a little. I'm such a big girl!

B got his stitches taken out of his face and he made more of a fuss than I did! He was screaming that he wanted Daddy and he wanted to go home.

Later in the day I went to see the geneticist. She was impressed with my pretty pink color and with how much I have grown. The last time she saw me was December 31st and I was a lot smaller then. She was surprised to know that I had been through two surgeries and had had RSV. She just talked with Mommy most of the time (Mommy had a little bit of voice left then) and she also took pictures of me and B so she can remember what we look like.

Well, that's about all for my doctor visits. We will see an orthopedist tomorrow, so there will be another update then. Maybe mommy's voice will still be gone. I hope so, 'cause getting to type is fun!! :o)

Hugs to all my Internet friends,
Carleigh Lauryn Grace (almost 5 months old now!!)

Not a whole lot happening here at Carleigh Central. We did find that the correct spelling for our newest discovery about Carleigh is laryngomalacia. She is still taking Zantac for the laryngomalacia. We have noticed that it really acts up at night and early in the morning. I guess that makes sense. There are a lot of nights that I go to bed not feeling well and then in the mornings I wake up with a scratchy throat or stuffed up. The laryngomalacia really aggravates Carleigh. She will be breathing along just doing fine and then start screaming. She is getting so used to it that she can catch herself before she even turns purple! I feel she is doing so much better than she was. We bought her a "Teeny Weeny Boppy", which is a round thing that can go around her neck. Usually they are used for children 18 months and younger in their car seats. When they fall asleep, the Boppy keeps their head from falling forward or to the sides. We use the Boppy as a little neck roll for Carleigh. When her neck is positioned a certain way, her snoring stops and her laryngomalacia doesn't act up. We bought Carleigh's first swim suit this weekend! She is going to look like a little ballerina. It looks more like a ballerina dress than a swimsuit! It's pink with three little white roses on it. We have a little pool for B, so I'm sure Carleigh will enjoy "swimming" with him. We are not going to immerse her totally, just hands and feet, but I wanted her to look all "official" and be in a swimsuit. :o) This will be a busy week. Tuesday we go to the pediatrician and to the geneticist clinic. On Thursday we have an orthopedic appointment to check out her hip and her feet. We were supposed to have Spina Bifida Clinic on Wednesday, but we're not really sure about it. I have to call tomorrow. We also have Parents As Teachers scheduled for Wednesday AND we are supposed to start therapy (Physical, Occupational, and Speech) sometime soon. I'll post more Tuesday night after our appointments. Oh, we ended up in the Emergency Room again! This time it was for B, not Carleigh!! B is now the proud owner of two stitches IN HIS FACE! He fell and hit his face (about ½ inch from his eye at the top of his cheekbone) on the edge of a step. His stitches will be removed on Tuesday, when Carleigh sees the pediatrician.

We're home from the hospital. Carleigh has larengo malacia. There are little flaps around her voice box that sometimes "flip" up when she breathes in. They go over her voice box and keep her oxygen from getting to her lungs. That is why she has been turning purple at times.

The ENT specialist said that reflux can cause it to be worse. I told him she wasn't vomiting, but he said she probably still has reflux, only it's the kind where her stomach acid moves backward up her esophagus. She has been put on Zantac to try to control the reflux. If the Zantac doesn't work, we will have to look into surgery. There is a laser surgery that can be done, but it requires general anesthesia, and we all know how Carleigh responds to that!

The other surgery is a tracheotomy (sp?) that can be done under local anesthesia. I cannot even imagine Carleigh getting a tracheotomy! It is the absolute last resort - even the ENT said so. We are praying that the Zantac works. We are also trying different kinds of positioning to open her airway more, which sometimes includes sleeping on her stomach. Good thing we have an apnea monitor!! I'm very afraid of SIDS!

Carleigh has gained more weight! This morning she was a whopping 8 lbs. 10 ozs.!! I had her reweighed before we left because at the first check, she had some wires stuck on her. Without the wires she was 8 lbs. 7 ozs., which is still a gain. We wanted to know an accurate weight so when we go to the pediatrician next week we can tell her the 8 lbs. 10 oz. was the result of cheating with a few wires. :o)

Carleigh is in the hospital again. Last night she was having episodes of breathing, then pausing, then making a snorting sound. When we would look at her after the "snort" her nose, mouth, and around her eyes were purple. Then she would start crying and breathing normally again.

We were told when she was born that her snorting was caused by her Chiari Malformation. I have since found that Trisomy 18 children sometimes have obstructions which cause them to snore. We called the doctors' office and the doctor on call said since she is having times that she is purple, we needed to take her to the emergency room. We arrived at the hospital at about 9 p.m. and were in the ER until around midnight. Then they admitted her and moved her to the 5th floor (pediatrics). Her x-rays show no sign of obstruction, but she does have narrow airways. That doesn't surprise me at all, because all of her is petite! So now we're just playing the waiting game until tomorrow when our pediatrician comes.

We are expecting to get to bring Carleigh home tomorrow, but it will be up to the pediatrician on whether or not Carleigh sees an Ear/nose/throat specialist. I am home tonight with B. We don't want him to feel left out. :o)

Oh, and Carleigh is up to 8 lbs. 5 ozs.! She has gained 1 ounce each day since we last saw the pediatrician! Hopefully she's on her weight gaining climb again!!

Keep Miss Carleigh in your thoughts and prayers, as I know you all already do. We'll be back home soon - we hope!!

Yes, another post! Tonight between 6:30 and 7:00 p.m. Carleigh had her first REAL bath!! She found it enjoyable at first, but then started SCREAMING at the top of her lungs!! I think she got a little chilled. She's used to being covered up with the towel while I bathe her.

I've made a decision about her SB lesion. I tried today to keep the dressing off it. I did put a piece of gauze into her diaper for some extra padding. When I got ready to give her a bath, I noticed her SB site was red. It wasn't damaged or anything, but the color of it reminded me of one of the painful "strawberry" burns you get on your knees if you fall on a gym floor. I don't want the SB to get irritated, so we are going to continue to do the gauze, sterile water, Saran Wrap thing -- even though Carleigh did not appear to be hurting at all. We've worked hard taking care of that SB and we don't ever want to go back to the way it was!

Yesterday was a good visit with our neurosurgeon. He said that Carleigh's shunt is looking good. He also looked at her back and said it was good too! I had a few questions for him and got some great answers. Carleigh's back is healed so well that she is going to finally be able to have her first REAL bath!! She has only had sponge baths since birth because of her open SB and now, at four months old, she's going to get a REAL bath!! I was going to do it this morning, but need to wait till tonight when John is off work so we can do pictures, video, etc. This is a super special moment for us!! We had expected to give Carleigh sponge baths forever - even when she's not a baby anymore!!

Also, we don't have to cover her back with the gauze, sterile water, and Saran Wrap anymore!! We have done that for so long that we're afraid to change anything. I think I will continue to put a piece of gauze on it, just to provide extra padding. Dr. Park said to be really careful and not scratch her SB. Most of it is covered with thick skin, but part of it still has thin skin. If we scratch the skin, her spinal fluid is right under there and will start leaking again, putting her back into a major infection risk. Also, if fluid can leak from her back, it will cause major problems with her shunt.

Her shunt is looking so good that we don't have to go back to the neurosurgeon for three months. So we'll continue to pray that the little shunt keeps doing its job. :o)

Having Carleigh with us each day is always good news. In fact, it's the best we could possibly have!

Today we have some good news from one of Carleigh's doctors - which we haven't had good "doctor news" in awhile! Carleigh's eyes are HEALTHY!!! The eye doctor said that is very good, because hydrocephalus usually does a lot of nerve damage to the eyes. Carleigh does have astigmatism (sp?) in both eyes. I was not surprised by that, because I, myself have astigmatism in one of my eyes. The doctor said for now the astigmatism is not bad enough to do damage to her eyes.

Since she is already behind developmentally, he wants to wait to prescribe glasses. She still has what I call "baby eyes", you know, the ones that don't focus right unless you are really close to them. We go back to see him in June, so I may have a seven-month-old with glasses!

For her weight check she is up to 8 lbs., 1 oz. Not as much as we would have liked,
but at least she's not losing!! Starting the 28th, we have numerous doctors' appointments.

On the 29th, Carleigh and I will have to spend the night at St. Louis, as we have back to back days of Dr. appts. Tomorrow we're off to St. Louis to see the neurosurgeon. It's a checkup for her shunt, so I'll post more tomorrow. :o)

We went to an orthopedist today. Carleigh does have a dislocated hip - it's her left one, not the right one. The doctor mentioned a Pavlik harness that would go onto Carleigh's body and attempt to put her hip back into place. His concern, though, was with her Spina Bifida. I guess putting her legs into the harness could bother her back. He wants us to talk to our neurosurgeon on Wednesday and ask him which orthopedist he works with. They will make the decision at St. Louis Children's whether or not to do the Pavlik harness.

As for the clubfeet, he said that we need to keep working with them and keeping them soft. They don't do surgery for clubfeet until age one, but it is possible that Carleigh will have to have a cast on her left foot. That will also be left for the doctor at St. Louis to decide. Carleigh is too small for AFO's. It would be nice if she could fit into them as they are removable braces, rather than casts.

Tomorrow we see the pediatric opthamologist and the pediatrician. Please think "big numbers" as Carleigh will be weighed tomorrow. We will be REALLY happy if she is 8 lbs., 6 ozs. or more!!!

Since coming home from the hospital, Carleigh has not faired too well at times. She still has so much congestion and runny gunk in her that it's hard for her to suck her formula through the bottle. I have kept her on Pedialyte to keep fluids in her and yesterday I called the doctor. She is now on breathing treatments. We have a nebulizer and her medicine is called Xopenex. It is supposed to have fewer side effects than Albuterol. She has a treatment every 3 to 4 hours as needed. It is helping already. The congestion is starting to break up some and she is back to drinking her Enfamil again. She often scares me to death with all of her little tricks that she does.

I found out that there is a special growth chart for Trisomy 18 babies. Our pediatrician has been using the regular chart, which Carleigh is still under the 5th percentile on it. On the T18 chart, Carleigh is a WHOPPING 50th percentile!!! I am so excited that she is doing well in comparison to her T18 friends. :o)

I have recently joined a Trisomy mailing list. I "met" a family who had Baby Noah the same day as Carleigh was born. Noah got his wings and flew off to Heaven just eight days after he was born. We know he is smiling down on Carleigh right now.

Happy Four-Months-Old Birthday to Carleigh!! We celebrated by coming home from the hospital yesterday! We love to spend our birthdays at home!!

I had planned on getting Carleigh's pictures made today, but since we just left the hospital, we'll wait until early next week.

As for Miss Carleigh, she's doing great! She came home from the hospital on one liter of oxygen. By yesterday afternoon though, we already had her turned back down to 1/2.

She is on a new machine called a pulse oximeter. It measures how much oxygen is saturated into her blood. It's a harmless machine that has a little probe that is taped to her foot, hand, big toe, or thumb. Our problem is that she is getting so active that the machine alarms a lot trying to find her. She won't keep those little feet still - which for nurses is a nuisance, but for us is a blessing! :o)

Carleigh is still pretty congested and has a lot of drainage. We have to suction her a lot, but she is not receiving breathing treatments at home.

I would like to take this time to thank everyone on the fifth floor of the hospital who helped care for Carleigh. I guess all things happen for a reason, as the hospital was given a chance to "redeem" themselves. We no longer hold a grudge for the hospital itself, just the certain people who refused to care for Carleigh as a newborn. Everyone we dealt with for this trip was positive and never mentioned the word "die". They were interested in knowing all about Carleigh, what all of her
little special areas are, what she likes, and what she dislikes. We believe in giving credit where credit is due, so THANKS to all of our FRIENDS on Pediatric Floor #5!! :o)

Also, Carleigh received the hearing test that she was denied as a newborn. We knew her hearing was not good, but we wanted to know exactly what we are dealing with. The test required Carleigh to be asleep for an hour and they put a series of clicks into her ears and measured the brain activity. Even though we do not have the results, we know that Carleigh pretty much requires 85 decibles to hear well. That is the equivalent of turning your tv up as loud as it will go. We don't know if hearing aids will help at this time, so for now, we're just talking a little louder and Carleigh is "talking" right back to us.

Carleigh's formula has been changed from Enfamil with Iron to Enfamil Lacto-free. She has been having extreme diaper rashes and the pediatrician thinks it is from the way she is processing her formula. If we take away the lactose, the diaper rash should disappear.

We are also supposed to give her five teaspoons of rice cereal a day (which is a lot) and add in baby food whenever we can. We are working with the pediatrician and a nutritionist to get Carleigh up to a nice weight. Our goal is the 25th percentile - she is currently under the 5th percentile. I think this is a large goal, especially considering that B is only on the 20th percentile!!

On Monday, Carleigh will have her vision test. This was another test denied to her in the hospital. It is also another test in which we are expecting the worst and praying for the best. We know her vision is impaired, we are praying that it's nothing big and that some cute, tiny glasses can fix.

Then on Tuesday, she will go to the pediatrician for a weight check and to an orthopedist. The orthopedist is a new one. We knew we would see him eventually because of Carleigh's bilateral clubfeet, but it appears on Carleigh's x-rays that she could have a displaced hip. If the hip is displaced, she will have to wear a special contraption to get it back into place.

This child never ceases to amaze me. With her, we take one step forward and two steps back. Through it all she is a trooper. I have NEVER seen such a small child go through so much - I guess that's why she qualifies as our little miracle. God must approve of what we are doing for Carleigh and Carleigh must love to be with us - because she is still our Angel on Earth - and we like it that way! :o)

This is what happened to Carleigh - as well as how she is doing now:

Carleigh had a doctor's appt. on Thursday morning. When we put her on the scale, she had gained a big fat ZERO!! I just knew the ped. was going to be on our cases, but she wasn't. I explained what had been happening since we had come home from the shunt revision.

Carleigh has been congested since being pulled from the ventilator. I called the doc's office and our doc had hurt our back and wasn't there, so I had to talk to a different doc. He didn't seem too concerned and put her on Delsum, which didn't do any good. (That was on Wed. the 16th.) By Sunday night, she had the runniest nose I had ever seen. Monday morning I called back to the doc's office and was stuck with the same idiot because our doc still wasn't there. I told him of her symptoms and that I was very concerned about RSV because I knew it was very serious in babies and would be even more serious with her. He said it didn't sound like RSV to him because she had no fever or wheezing and told me if she did get a fever he would have to see her.

Maybe I haven't been paying attention, but I was unaware that there is a "snot test" for RSV. Had I known, I would have insisted on a test. So here we sat for two weeks with a congested, snotty kid until our appt. with our pediatrician. The FIRST THING she did was a chest x-ray and a RSV test.

So, on Thursday evening, Carleigh was transported to the hospital via ambulance - RSV positive! The idiot doctor that told us she didn't have it (without doing a test) currently rates right up there with the idiots from the NICU.

Oh, and by the way, she is in the hospital that she was born in. My heart sank when we knew she had to go there. I have watched them like a hawk. They consider her latex precautions an actual allergy and are extremely careful. We have had a wonderful experience with them. They are treating her like "any other" baby with RSV. She started in the PICU and was moved to the floor the next day. It's amazing what getting into an elevator and riding up one floor can do for you!!

Now about Miss Carleigh... Her chest x-rays are clear. She is not showing any signs of pneumonia. (THANK GOODNESS!!) She has an NG tube, but has almost worked her way back up to normal feeds, and I'm predicting they will remove the tube tomorrow. She was so congested that she couldn't even suck a bottle on Friday morning. She receives breathing treatments every three hours. Otherwise, she's normal little Carleigh - happy, awake, and "talking" until 3 a.m.! Thanks for your extra prayers and please keep saying them until our little one is safely home.

I can't make this long. An ambulance is on the way to pick up Carleigh. She has RSV and has to be monitored in intensive care in the hospital.

All we know for now is that it hasn't caused pneumonia, but with her heart problems, they feel the need to monitor her closely. Please say an extra prayer for us and I'll update again as soon as we're home.

As it turns out, Carleigh's SB lesion being sunken is just fine. The neurosurgery nurse (Delia) that's in my SB group said that it's just a sign that the shunt is working well and that if we have Carleigh sitting up for long, it will start bulging again. The morning after it had been sunken, it was back to it's bulging self. It's just a small bulge, nothing in comparison to what it was before the shunt.

Carleigh has been a real night owl lately. I think so many visits to the hospital have her confused on nights and days. She's being an angel right now, laying here on my lap sleeping. I should be taking advantage and sleeping myself, but with two kids and busy days, this is my "me" time. :o)

Carleigh has been eating up a storm! I am hoping that on the next weight check on March 2nd she is well over 8 lbs. and maybe even at 9! Her cousin is due next month and we hope Carleigh weighs more at 4½ months old than Meagan weighs at birth! lol

I thought I had better make a post so you all wouldn't worry and think we're in the hospital AGAIN! :o)

Carleigh is doing just fine. She is now battling her first cold. I had the feeling she would end up with one, because her brother had one while she was in the hospital. She started having a really runny nose on Sunday night. I called the doctor on
Monday. Our doctor is out this week, so the doctor I talked to said not to put Carleigh on any medication. He said with her heart problems an antihistamine would probably not be good for her. So we're just riding this one out. My main concerns were RSV, which he said with her nose running like it is, it doesn't sound like RSV, and also, she is on oxygen and we are afraid her nose will plug up and she won't be able to get her oxygen.

Also, last night, another something major happened. John was changing her diaper and her SB lesion is sunken!! It looks so freaky! We don't know if it should be sunken like that, so I'm in process of finding out through my SB email group. The good thing about her lesion being sunken is that she was moving BOTH legs WILDLY!! I don't know if some stress was relieved or what, but it was so good to see our little girl moving both legs. Her left foot is clubbed pretty badly and we thought
she might never move her left leg well, if any at all. She's got that knee bending down really well though!! :o)

That's about all from "Carleigh Central". I'll try not to wait so long to post next time. But hey, I'm a busy Mom!! :o)

We have just been through a major ordeal! On Thursday, the 10th, I called the neurosurgeon's office because Carleigh had had a rough night. Her shunt tubing was still swollen around it. They told me to bring her to the hospital asap and not to feed her in case they had to sedate her. I knew that a shunt revision was coming - two weeks after the original surgery. Not a good thing. Carleigh is not the best candidate in the world for anesthesia, and having it two times in two weeks was not going to be fun!

We arrived at St. Louis Children's at about 3:00 p.m. Carleigh had to have a CT scan and x-rays. Dr. Park and Dr. Rivet decided that Carleigh's shunt needed to be moved to a different place because it was not draining effectively. Our fear of another surgery was topped off with the knowledge that Carleigh would now have to have another incision on her head. They decided to admit her to the hospital that night, but to wait until morning for the surgery. Friday morning we awoke to more swelling. Of course, that overwhelming urge to be sick had found me again.

We hoped for the same anesthesiologist as before, but it didn't happen. Surgery lasted about 1 1/2 hours. When Dr. Park came out he said Carleigh did "ok" and would be going to the PICU. (That was not the original plan.) He told us Carleigh needed to stay on the ventilator for awhile. We knew something was "up" since he had said she did "ok" and for the first surgery he said she did "good".

When the anesthesiologist came out, she told us what had happened. The combination of swelling and anesthesia made it impossible for Carleigh to breathe on her own.
Her airway was blocked. We accepted that shock fairly well and were happy to walk with her as they wheeled her to PICU.

Nothing ever could have prepared us to see Carleigh on a ventilator. Our sweet baby's face was covered with tape and tubes. It was almost too much to handle. We waited outside the PICU for them to get her "settled". We waited and waited. I called into the PICU two or three different times to see what was taking so long and never really got an answer. Once we were allowed in the PICU, we were told what had happened.

During transport from the recovery room, Carleigh's vent was somehow moved, loosened, or pulled out. When that happened, she not only lost the ability to breathe, but lost oxygen too. They had to sedate her, temporarily paralyze her, and reintubate her. During this time, Carleigh's heart decided to stop working! It was a mad rush to get the appropriate medication to get her going again.

My whole world collapsed then and there. We had never had any problems with her heart and I was afraid all the stress on her was starting to take its toll. I was thankful that there were doctors there who knew what they were doing, and also thankful that we were at St. Louis Children's where they wouldn't deny her the ventilator when she needed it.

The plan was to remove the vent on Saturday after they had weaned her down from 20 breaths per minute. They turned the machine off to see what she would do. She did well for awhile, but then got mad and held her breath. Unacceptable. The vent was turned back on and we waited until Carleigh was ready. On Sunday at around noon, with MANY people present (including Mommy and Daddy!), the ventilator was removed with success!!

Carleigh spent Sunday night in the PICU for observation and on Monday at around 4 p.m. was moved to 12 W. We came home today, with our little fighter and her new shunt. Everything is going well and Carleigh hasn't had any more episodes with her heart.

Things felt different this time. We rushed off to the hospital without me knowing in advance. It felt different knowing that all of Carleigh's faithful Internet friends wouldn't be sending special surgery prayers in with her. I am thankful that all of your usual prayers were enough to help her through. We appreciate all of you so much!!

We went to the neurosurgeon today to have Carleigh's shunt checked. I had been concerned because there was some puffiness around her shunt tube. The neurosurgeon
looked at it and said some puffiness was normal a couple weeks after surgery. His concern is that Carleigh's soft spot is not as sunken as he thinks it should be. We are supposed to sit Carleigh up as much as possible for the next two weeks to see if we can get rid of the puffiness. We go back to the neurosurgeon then. If her soft spot is not sunken more, she will probably have to have a shunt revision. That means another surgery - not something her Daddy and I are looking forward to! Also, if the puffiness doesn't get better, or gets worse than what it already is, we are supposed to go to St. Louis sooner.

The only good thing about this trip is that Carleigh weighed 8 lbs. 6 ozs. I celebrate that with mixed emotion. I feel that part of her weight gain is from fluid collecting because the shunt isn't working. Of course, right now I am paraniod, scared of another surgery - so I am hoping that the weight gain is all weight and not fluid.

At least I don't have to worry about her getting a feeding tube now. The pediatrician was going to consider it if Carleigh hasn't made a weight gain by this Friday. It seems like right now we have one accomplishment, and then we step a little backward with something else.

One thing never changes though, and that's our love for Carleigh. No matter if she is being our perfect little girl, "Princess Grouch", or "Grumbalina", we love her more and more each and every day!

Exciting news from "Carleigh Central".... Yesterday, our PAT teacher was here working with her big brother. I was sitting on the couch with Carleigh laying beside me, not really paying any attention to her. (I THOUGHT she was sleeping!) Amy looked over at her and said, "Wow! She's really moving a lot! She will be rolling over before long." I looked over at Carleigh and she was moving her arms wildly, as usual. But then I noticed her blanket was moving! I pulled it off her legs, only to see her bending and straightening her knees!!

I was so excited! Usually when Carleigh moves her legs, it is basically from her waist with both legs extended outward, close together. Yesterday, though, with the bending knees, she did more of a kicking motion. All of this from a baby who is SUPPOSED to be paralyzed from the waist down. (That's what they told us in the
NICU.)

So, now we are trying to push the issue to get Physical Therapy available to us now, instead of having to wait until Carleigh is six months old. I believe that Carleigh
will learn to walk - you just wait and see!! :o)

Carleigh is still doing well. She's been a bit cranky - but I would be too if I had just been through surgery!! As promised, here is the shunt story...

We first began going to St. Louis Children's Hospital when we found that Carleigh was beginning to get hydrocephalus and would need a shunt. We could tell that we were going to like St. Louis Children's from the minute we walked through the door. It didn't have the "hospital atmosphere" at all. We could tell that it would be full of people who loved kids.

Things progressed rapidly after our first visit. We saw the neurosurgeon and the cardiologist within a week of each other and surgery was scheduled to be performed on our precious baby on January 27, 2000.

This is where the story begins...

On Wednesday, January 26, we arrived at St. Louis Children's for an appointment with the anesthesiologist. He explained to us all the risks involved in putting
Carleigh under anesthesia. We thought he was a very nice man, even though the words he told us were scary. We were told to report to the sixth floor at 9:15 a.m.
After that meeting, we again met with Dr. Park. He explained the shunt to us, where it would go, and how it would work. We were finished for the day and went back
to the motel to soak everything in. That night I felt I needed to make pictures of Carleigh. I wanted to remember what she looked like before she got the shunt.

Thursday morning I woke up with the overwhelming urge to be sick. The day had come to put my daughter through the surgery that I didn't want her to have.
When I had first learned she had Spina Bifida, hydrocephalus and shunts were what scared me the most. Now one was staring me in the face - just a few hours away.

By the time we arrived at the hospital, Carleigh was crying. She had to stop drinking formula at 5:30 a.m. and Pedialyte at 8:00 a.m. The time was 9:15 and my girl was wanting to eat!

We were taken into a room and Carleigh was weighed. Seven pounds, thirteen ounces. Not much of a weight gain in a week's time, but Carleigh had been sluggish about
eating - no appetite. She was also measured for the first time since birth. Twenty inches! She's grown a whole inch and a half!

We spoke with another anesthesiologist. He told us that the anesthesiologist that would be with Carleigh was the best. He went over the risks again. The whole time
my stomach was turning. We asked if we could have anesthesia with Carleigh so that we wouldn't know what was going on. He thought that was funny. The neurosurgery
nurse practitioner came in to check and see if we had any questions and then we had to take off Carleigh's clothes and put a hospital shirt on her. At the last minute
the anesthesiologist came in and asked us how far we wanted her to go with Carleigh if something went wrong while Carleigh was under anesthesia. We told her to fight and not to give up on our little girl.

Before we knew it we were moved to a different room called "Surgery Holding". There were other parents in there getting ready to send their kids off to surgery - happy,
like it was no big deal. We were in tears. Carleigh was the smallest there. All the other kids were two and above. How could we let our little girl go without us? The anesthesiologist came over and promised us three things - she would watch Carleigh closely, she would take good care of her, and she wouldn't let Carleigh feel anything. We kissed Carleigh goodbye and before I handed her to the anesthesiologist, I whispered, "Be tough, keep fighting, I love you." Handing my daughter to someone I had just known for five minutes and trusting her with Carleigh's life was the hardest thing I have ever had to do in my life. The time was 10:30.

The surgery was expected to last 2 hours. John and I tried to ignore the time, but it was hard. We read magazines, talked, and hugged and smelled (yes, smelled!) Carleigh's pink blanket and clothes. We sat close to the door so we could see in advance who was coming. Our biggest fear would be to see Dr. Park early, because then we would know something was wrong.

At 11:30, Dr. Park came through the door. It had only been an hour and fear was in my heart. I asked him if Carleigh was finished. He said, "Yes, and she did great!" I cannot even begin to tell the amount of relief that poured through me. The overwhelming urge to be sick vanished and I asked when we could see her. He said it would be about 30 minutes.

We called Grams and Grandad and Mammaw and PawPaw, as well as Carleigh's godparents, Ruben and Debbie. They were full of questions and we answered as best we could, considering we hadn't seen Carleigh yet. The anesthesiologist came out and said that Carleigh would have bruises on her arms and legs. They had trouble finding a vein for the IV, but she assured us that Carleigh was asleep the whole time and didn't feel a thing.

Before we knew it, they were calling for "Carleigh's family" to meet her at the elevators. I expected to see the worst, but the only real thing that shocked me was how much of her hair they shaved! She still looked the same, only a little more sleepy, but she did have the energy to cry and let them know exactly what she thought of them! Our little fighter had made it through another trying time. I had expected her to be pale. She wasn't at all. Her Daddy and I were the only pale ones!!

Carleigh was put in the Pediatric Intensive Care Unit (PICU) for the night. She wasn't having any problems, but the doctor wanted to monitor her closely since she has a heart condition. The PICU was WONDERFUL! Carleigh's nurse was named Kellie. Before we could say a thing, she had removed everything latex from Carleigh's area and had put up a sign saying, "Latex precautions". She told us she didn't want anyone coming in and messing with "her" baby. Everyone in the PICU was fascinated with Carleigh. They said that the other PICU babies didn't cry - (most were on
breathing machines) - and it was different hearing a baby cry there. By 3:30 p.m., just four hours after surgery, Carleigh's IV was capped off because she was eating. Carleigh spent an uneventful night sleeping in the PICU and Mommy and Daddy caught a few zzz's in the parent lounge.

At 6:30 Friday morning, I went down to see Carleigh. She was sleeping like an angel. The night nurse, Jim, said that she had been fussy until about 2 or 3 a.m., until she finally went to sleep. That's my Carleigh! I told him that she does that most of the time at home. She's a little night owl!! *lol* John and I spent time with her until 8, and then we had to leave so the doctors could do rounds.

At 10:00 rounds were over and John went back in to see Carleigh. They were moving her!! We joked about "sitting on top of the world" because we were moved to the 12th floor, the highest in the hospital. In 12W-24A we were very comfortable. Our nurse there was Gerry. She was the charge nurse, so Carleigh was her only patient that day. We really liked her too. She gave Carleigh a bath and finally washed all the Betadine off her. We "hung out" all day until the doctors made rounds at about 4:30 and said that we could go home! While the doctor was getting Carleigh's discharge papers ready, the nurse took out her IV and we got her dressed. We went over to say goodbye to Carleigh's roommate, Noah, a very handsome five-month-old who had just gotten a "button" feeding tube. He already had a shunt like Carleigh's and Noah's big problem was that he has a brain tumor.

By 5:30 we were on our way home - in the snow!!!

We would like to say a big "THANK YOU" to everyone at St. Louis Children's Hospital. Not only did they treat our daughter like a first-class citizen, they also gave value to her life. We never heard, "Oh, she's got Trisomy 18, she's going to die," instead, we heard about how cute she was.

The people at St. Louis Children's will never truly understand how much their kindness meant to us. They do not know the entire "NICU Horror Story" - just some parts of it. We did learn that had Carleigh been transported to St. Louis Children's after she was born, she would have been treated with the same first-class treatment she received during her shunt surgery.

St. Louis Children's gave Carleigh something we've always wanted her to have - A fighting chance and a little respect. Carleigh not only got respect, but love from people who found it a privilege to take care of our little girl.

We're home!! Carleigh is doing great! She made it through the surgery just fine. She's such a little trooper! Since it's so late, I'll post the whole story
sometime tomorrow. I just wanted to put a quick update for all our faithful friends who continue to follow our Little Miracle's story. Thank you for all of your prayers!!