1/29/2000

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.

1/28/2000

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!!

1/25/2000

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.

Blake 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.

1/20/2000

Today's weight check brought us more good news. Carleigh is no longer a "six pounder"!! She has climbed up into the "sevens". 7 lbs. 11 ozs. to be exact!! We are so excited! 13 ozs. in 14 days!!

Our pediatrician wants us to increase Carleigh's feedings up to 65-70 ccs. This is going to be a challenge, because even though we were supposed to increase to 60 ccs. this past two weeks, Carleigh has really been liking 50, so we didn't push her. The pediatrician did not like that at all because she said Carleigh will not be able to maintain her weight at only 50 ccs. She said that if Carleigh will not drink what she is supposed to, we WILL get it down her. (feeding tube!) So now we have to push. We have come so far and I'm not going to let Miss Carleigh go in reverse!! I did get her to drink 60 ccs. tonight, but she drank half of it at 6 and the other half at 7. I think we may try feeding her less amounts more times and see how that works. As long as I can get her to gain 13-14 ozs. between each visit, we'll be doing well, no matter how much she drinks! I want her to gain weight and I don't want to stress her little heart. Drinking from that bottle is hard work! Determined Mommy and Determined Carleigh will find a way - without a feeding tube!!

1/18/2000

The visit with the cardiologist at St. Louis Children's went well. We didn't see Dr. Grady, but two women cardiologists. Unfortunately I don't remember either of their names! Anyway, they said they see no reason why Carleigh cannot have the shunt surgery. It is scheduled for Thursday, January 27.

We now know all of the concerns with Carleigh's heart. We were afraid they would try to put a life expectancy on her, which they didn't. We were very pleased
with them, especially when they referred to Carleigh's heart as "different". They never said she was "defective" or even had "problems". We liked their use of
words because we believe Carleigh is a normal child, she just has things that are different from other children.

Carleigh's heart is very complex. Trisomy 18 has caused the complexity. She has four things that make her heart different from other people's.

These are the differences, with my best attempt to describe them.

A Ventricular Septal Defect (VSD) is a hole between the two lower chambers of Carleigh's heart. The low oxygen blood in the right ventricle is allowed to mix with the high oxygen blood in her left ventricle. Because of this, you can hear a heart murmur. The Ventricular Septal Defect is a common problem with Trisomy 18 children.

An Atrioventricular Septal Defect is a hole in the top part of Carleigh's heart. There are several types of ASD defects. We do not know exactly what extent her ASD problem is, but fortunately it is not a "complete" ASD! We do know that she will have to have penicillin prior to dental work or surgery on the mouth, bowel, or bladder. Penicillin will prevent the uncommon, but possible, occurrence of bacterial infection forming on the heart lining near the defect or valves. The Atrioventricular Septal Defect is also a common problem with Trisomy 18 children.

Pulmonary Stenosis is the narrowing of the pulmonary valve. This narrowing keeps Carleigh's right ventricle from pumping as much blood through the valve to the pulmonary artery. Currently this stenosis is helping Carleigh's heart, because it is preventing the extra blood from the VSD from being pumped through the artery. As Carleigh gets older, Pulmonary Stenosis will become more narrow. We may notice she is turning blue while she is eating or crying. The Pulmonary Stenosis can be reopened with surgery.

A Bicuspid Aortic Valve means that Carleigh's Aortic Valve is shaped differently. It should be shaped like a "peace sign" where there are three openings. Instead, Carleigh's is shaped more like a "fish", with only two openings.

With these heart concerns, we know that Carleigh will never be a basketball or track star. That does not bother us in the least! We are very happy and feel very blessed to have such a special Angel in our lives!

We go to the pediatrician in two days. I'll be back then to reveal the next big (hopefully big!) weight gain! :o)

1/12/2000

We went to the neurosurgeon yesterday. He ended up referring us to a neurosurgeon in another city that has a Children's Hospital. They really don't know what to do with Carleigh because of her heart.

The second neurosurgeon (Dr. Park) wants to have a cardiologist at the Children's
Hospital look at her heart. The reason for all of this is to determine whether or not Carleigh needs a shunt. Since her Spina Bifida lesion has closed itself, there is no way for her fluid to drain. Her head circumference is increasing some and if we don't take care of the problem, it will continue to get larger. So, we need to know exactly what's happening with her heart so we'll know if she can have surgery or not.

We see the cardiologist next Tuesday, so hopefully we will know more then.

1/09/2000

It's past midnight, so I didn't get here soon enough to update on Carleigh's two month birthday! I missed it by a whole 20 minutes!

Carleigh doesn't care though, she enjoyed her "little" birthday today. I had gotten her some long-sleeved onesies. Since it's warm in the house I let her wear one without pants over it. She liked having bare legs! I even took her socks off too! LOL

She just looked around with the biggest brightest blue eyes I've seen in awhile. Speaking of eyes, Carleigh is back on Tobramycin. She has those dreaded "eye gunkies" again. This time she minds the drops though. She's almost figured out that when she sees the dropper coming to close her eyes. With 17 more doses to go, I think she will be challenging us before they are all given!

Also, I forgot to mention that the pediatrician said we can feed her whenever she wants up to 60 ccs. (2 ounces) eight times a day.

Currently at this minute, she is WIDE awake with no intentions of sleeping anytime soon. Her brother is watching a Maisy video. What a couple of night owls!! :o)

1/06/2000

Today we had another visit with the pediatrician. We were "thinking big" as Carleigh was weighed. She now weighs 6 lbs. 13.8 ozs.!! The pediatrician said that gaining 14 ounces in 14 days is right on target. We are so happy that we're close to seven pounds and that Carleigh is growing as she should!!

Carleigh is going to stay on the oxygen. The pediatrician doesn't want her to have to work any extra to breathe. She is doing well with the oxygen. We do have her off it for small amounts of time, like when we make pictures of her or when she pulls it off herself!

Carleigh also had her first vaccinations. We were thankful that two of the immunizations were put into one needle, so she got three shots rather than four. Of course she cried, but it wasn't nearly as much as her brother did when he got his immunizations at two months of age! The nurse and I noticed right off how Daddy "just happened" to go pay at the desk while Carleigh was getting shots. It would hurt him as bad as it did her if he saw the shots in process! It's hard on me too, but someone has to be there.

We are going to see a neurosurgeon on Tuesday. He is going to look at Carleigh's head size and shape and determine whether or not she has a problem with hydrocephalus. If there is a problem, she could possibly have to have a shunt, which I'm hoping she won't.

1/03/2000

On this day (Monday) exactly eight weeks ago, our little angel was born. Actually, at this time I write (8:23 p.m.), she was being christened because we thought she only had hours to live.

Now, eight weeks later, our angel is still here on Earth with us. We are so thankful to God for the gift He has given us. Carleigh seems to get stronger every day. We know that God is right here with her, holding her hand, encouraging her to get stronger. We also know that He is with us, letting us know that she is safe, no matter what.

We have enjoyed our first eight weeks with Carleigh and look forward to the many weeks that lie ahead with our little miracle from God.