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!!)

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)

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)

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.

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!

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!!

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.

We're back from another visit with the pediatrician. We had a lot to talk about today!!

First of all, we were hoping Carleigh weighs 6 lbs. Well, she couldn't have gotten any closer - 5 lbs. 15 ozs.! We're so proud of her for her weight gain!

We told the pediatrician about Carleigh pulling out the feeding tube. She wasn't upset at all and asked how Carleigh had done without it. She opted to leave the tube out! :o) Not only that, but she said she thinks Carleigh is HUNGRY! (We had told her of our problems with crying 1 hour before feeding time.)

We are supposed to raise milk intake from 32 ccs. to 51 ccs. every 3 hours! If Carleigh can't handle it, we're allowed to cut it in half and feed her more often than 3 hours. I don't forsee any problems, as we've affectionately dubbed her "Piggy
Girl". LOL

Another concern with her is the still open Spina Bifida. The pediatrician told us that she can't give us a referral to get it repaired. She explained that she will not do the referral because she is not going to do something that she believes will
allow Carleigh to die. The surgery is a major surgery as a surgeon has to go in and repair and try to reconnect the nerve endings. With Carleigh's heart problems, the pediatrician feels she would not make it through surgery.

John and I were not willing to leave her back open, until today. We have accepted this well. When you get the choice of having your daughter alive, or risking her life for a surgery, well, we want her with us, hands down, no arguments. She has lived 6 1/2 weeks with open Spina Bifida and has flourished.

My main concern had gone from the back surgery anyway, and is focused more on the fear of hydrocephalus. Carleigh's back has "grown" a protective covering on it. What was once a walnut-sized opening is now a small slit that is about 1/4 inch long. Without that opened all the way up, it has made it possible for her head to collect fluid. We addressed that issue with the doctor too. She said that Carleigh is a possible candidate for a shunt, and she would give a referral for that. She said that Carleigh's bones in her head will compensate to make room for the fluid, but she doesn't want her head getting large and heavy because it would then be hard to care for her. We are going to see a neurosurgeon to determine if a shunt is needed. Carleigh's head has had the same measurement, so for now it's not growing. A shunt would be a future consideration - that is - if her heart can handle the anesthesia. The surgery for the shunt is not as major as closing the back, but she would have to be put under anesthesia for the surgery. That's about all for now. We are proud of our little fighter!

We took Carleigh to the doctor on Tuesday.

She gained 6 ozs. in one week!! The doctor was VERY impressed, as she is right on target. She is now over her birth weight.

Also, we "sneaked" out and got family pictures made at Sears. Grandad had made them of us at the hospital, but wasn't happy with the "wall background". You should have
seen the tears in his eyes when he saw those pictures!!

Thanks, Sears, for accommodating us! (They made us the first appointment of the day and didn't book any others right behind us!)

We had our first well-baby visit to the doctor today.

Carleigh weighs 4 lbs. 14.8 ozs, up from her 4 lbs. 13 ozs. at discharge from the hospital. Her doctor was happy to see she has gained weight, rather than losing it.

The SB lesion is doing ok, no signs of infection. We discussed starting proflactic antibiotics, but her doctor was concerned that Carleigh would become immune to antibiotics if we did that.

We are supposed to raise Carleigh's milk intake to 20 ccs every 3 hours. I told the doctor that she gets a real "attitude" when it's getting close to time to eat. She sucks the feeding tube and cries!

We discussed having a heart check and also seeing a geneticist. Our next appointment is next Tuesday.

Carleigh is doing great! She is taking 15 ccs of milk every 3 hours through her tube! We have cut her IV to 7.5 ccs. Hopefully we will be off it soon.

Carleigh is now viewing the world through both eyes. She only opened one eye for
the first few days, but is now beginning to look around more. She has been enjoying lots of hugs and kisses from her big brother!

We go to the pediatrician on Monday. I hope she has gained some of her weight back. She weighed 4 lbs. 13 ozs. when we left the hospital, so we'll see. Thanks for your prayers!