Imagine being startled awake three times beginning at 5 a.m. by your daughter's apnea monitor. The blinking red light and the screaming siren say "slow heart".

Imagine looking at your precious baby and seeing a horrified look on her face, purple, and no movement at all.

Imagine scooping up that precious girl into your arms, crying, and screaming at the top of your lungs, "Oh, God, please don't let her leave me!!"

You have just experienced my morning, April 6, 2000, the scariest morning of my life, thus far.

Carleigh was taken by ambulance to the hospital at about 9 a.m., Central Time. She had blood drawn and a chest x-ray. The ER doctor cannot tell us why our daughter's heart insists on beating slowly. Her three alarms in the early a.m. meant that her heartrate had dropped below 80, which is low for a baby her age. After that, I freaked out and set her apnea monitor to alarm when she drops below 100. She has alarmed at least 7 times today on that setting.

We were released from the ER at about noon and went to eat before our promised trip to the pediatrician at 1:30. Carleigh was checked out there and sent back to be admitted to the hospital. She has lost 6 ozs. since last Tuesday, and now we have to make a decision about the dreaded g-tube. We also still have to talk to the ENT about her laryngomalacia. Though they still cannot tell us why her heart is slow, they feel it could be connected to her breathing problems.

All I know is that one Mommy and Daddy aren't going to be able to sleep tonight. John is at the hospital with Carleigh and I am home with B. I am so scared something will "happen" while I'm not there, but I know that our son needs his mommy too. It's very hard to be two places at once and to choose where to be.

I talked to John once and Carleigh had alarmed again. Three nurses came in to "bag" her to help her breathe, but ended up not having to. The bag is still in her room. She has also just received an IV.

Tomorrow she will do a Barium Swallow Test to determine if she has reflux and how bad it is. If she has to have surgery for the reflux, it takes about an hour. Surgery for the g-tube is 10 minutes, but she would still have to have general anesthesia.

Please pray for Carleigh. Please pray harder than ever before. We know that she is in God's hands and that He has been so gracious to us. But still I find myself not ready to give up my daughter. I do not want her to suffer or be in pain. I am hoping that this is something that can be fixed easily, but with no one knowing what is wrong with her heart, I don't see how.

Please pray that God will give us the answers. Should we put her through surgery or not?

There has been a song running through my head all day long. I have been singing it to my sweet Carleigh. It is by Leann Rimes and these are a few of the words:

How do I, get through one night without you,
If I had to live without you, what kind of life would that be?
Oh, I, Baby, I don't know what I would do,
I'd be lost if I lost you, if you ever leave,
Baby, you would take away everything good in my life,
And tell me now,
How do I live without you, I want to know
How do I breathe without you, if you ever go
How would I ever, ever survive?
How do I, oh, how do I live?

Again, please pray for Baby Carleigh.

Thank you,
Andrea. (Carleigh's Mommy)

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!!

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!!

Well, this is it. Tomorrow one little Carleigh and two nervous parents will make their long trip to St. Louis Children's Hospital. Tomorrow will be filled
with a consultation with the anesthesiologist and another with the neurosurgeon. Hopefully we will have time for a little fun to break some of the nervousness. Then,
on Thursday, Carleigh will have the shunt surgery to free her little head of the swelling from hydrocephalus.

B will stay here at home with Grams and Grandad, Mammaw and PawPaw, and Aunt Kim each taking shifts. We are thankful that we live so close to all of our family and that they are willing to help us. He would be miserable if he had to stay at the hospital with us.

I think I'm ready for this. My friend, Lori, (another SB mom) called me a couple of nights ago and prepared me for what Carleigh might look like after surgery, how she will act, and basically just psyched me up for it. Her husband, Nathan, also took the time to talk to me. *Thanks, Lori and Nathan!!* This will be the last post until Friday or Saturday. Please say and extra prayer for Carleigh to have strength
and for her nervous parents to have courage.

Carleigh is still doing great! She drank 28 ccs. from her bottle two different times!
The only problem is that she's not consistent with it. Until she's consistent, the feeding tube has to stay in.

We are still hoping for the surgery. The earliest it would be is mid-January. No
plans are totally in the works yet. The surgery is going to depend on many things - the biggest being if Carleigh's heart is strong enough to handle anesthesia. Only time will tell...