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)

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!

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!!