We just had our first visit with the geneticist, Dr. Miles. We knew that T18 was not something that we passed to Carleigh, but it was nice to hear an actual geneticist tell us that! She said that T18 happens randomly and there is absolutely nothing we could have done to keep her from getting it. We were worried about our son being a
carrier or that our brothers and sisters could be affected. We are thankful they won't be!!

Now we understand a little more about how the Trisomy happened, as far as the way the cells divided. Dr. Miles was very positive toward us and what we're trying to accomplish with our little miracle - something we appreciate VERY much! She told us Carleigh is an individual and no matter what the statistics say, she is still our baby. We get to make the choices that we want for her and also, it is going to be up to her on how long she is with us.

Dr. Miles said that Carleigh making it through the pregnancy, labor, and delivery shows that she is stronger than many other T18 babies. Most don't even make it through the first few months of the pregnancy!!

Also, we are not classified into the 1 in 1000 chance for Spina Bifida, as Carleigh's is caused by the T18. Spina Bifida can sometimes be prevented by taking Folic Acid. When I found out she had SB, I felt maybe it was my fault because I didn't get enough Folic Acid. It's nice knowing that no matter what I did or didn't do, it did not cause Carleigh's problems.

Now we can just concentrate on helping her grow and letting her know she is VERY loved!!!

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!

I'll tell you right now, we have got a "wild child" on our hands! When Carleigh is older, I'm sure she is going to challenge us in every way!!

Last night at 11:45 I was fixing her bottle. John was holding her in the bedroom trying to keep her calm. (When she's hungry she has a real attitude!) John yelled, "ANDREA, COME QUICK!" It was a yell of panic, so I knew we were in trouble. I could hear Carleigh crying, so I knew she was breathing, but I thought maybe she was choking for some reason. I went running into the bedroom and, well, Miss Carleigh decided that she doesn't need her feeding tube anymore! SHE PULLED THE THING OUT!!!

John didn't know what to do. I told him this is Carleigh's big chance to show her doctor that she doesn't need it. We went ahead and gave the bottle to her. She actually drank BETTER without the tube in her mouth!

As of this morning we have been through four feedings without the tube. She has behaved herself and drank every drop that we've given her! I am so proud of her for doing so well. She may be small, but she knows how to fight! In the future though,
I wish she would ask me first. LOL It would have been so nice for her to say, "Mom, Dad, I'm going to pull out my feeding tube now", rather than scaring us to death!! Just one more sign to remind us that she is a normal baby. It will be a great Christmas present if the doctor will leave the tube out. There will be one less "gadget" hanging from our little girl.

We hope everyone has a very Merry Christmas! We have found the best Christmas gift - our little miracle baby - sent straight to us from Heaven. Just watching Carleigh and her brother together is the greatest gift of all!

I called the doctor today.

I've been concerned about Carleigh's head shape. It's not getting "fatter" but it's getting "taller". I was worried about hydrocephalus, but since her circumference is still in the normal range and she isn't vomiting or acting differently the pediatrician said it was ok.

Paranoid Mom I am, but I don't want anything to happen to my little angel!

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...

I am so proud of my girl! This evening she drank 8 whole ccs. of milk from a bottle!!

Earlier I had given her formula and she only drank 2 ccs. The formula is so thick she has problems, but the milk worked like a charm!! The only problem we had was that she would rather sleep than eat. I had to keep taking the bottle away and burping her to wake her back up! :o) At least we're off to a good start. 8 ccs.... only 24 more to go!!

Today is Carleigh's "official" one month birthday!! We're celebrating by trying something new!!

Carleigh had her first taste of milk! It was from a bottle - not her tube!! I thought I would experiment with her and see what she could do. I have to be very careful and not let her gag. I don't want her to aspirate the milk back up into her lungs!

She did pretty well for her first time. The bottle is too big for her and she's not too sure about it. She does try to suck, so I think we'll be doing great eventually. I bought her some preemie bottles tonight. They are much smaller and I think they will be just right for her. We're starting out small - just 1 or 2 ccs., but I hope we can eventually have the whole 32 ccs. from the bottle and can get rid of the feeding tube!! :o)

We've had a great first day without the IV! Carleigh is tolerating her
32 ccs. of milk with no problems. We will stay at 32 ccs. until she gains more
weight. We can't overload her heart with liquids.

I'm noticing that she is becoming much more alert. She doesn't sleep as much and loves to just look around. She has a fondness for lights and will just stare at them! She is still enjoying her big brother. As soon as he touches her head she just gets this calm look on her face. He is so proud of her!!

A sleepless night last night has given us reason to be happy today.

Yesterday we ended up with air in Carleigh's IV line two different times. We believe the cause was the filter in the line. We had people here two different times to get the air out for us. At about midnight Carleigh started doing her usual crying. She always does this, wanting to sleep with Mommy and Daddy - and of course, she always gets what she wants! :o) I noticed that she was crying louder than usual and knew that she had to be in pain. We couldn't figure out what the problem was, but as long as we rocked her, she would calm down a little.

At 2:30 a.m., Carleigh's IV pump alarmed that there was "high pressure". We checked the line to make sure it wasn't pinched and couldn't find anything wrong. I called our Hospice nurse and she found that Carleigh's Picc Line was blocked! She stopped the IV pump (since it couldn't work anyway) and we got to bed about 5:30 a.m. I noticed immediately that Carleigh had calmed down when the pump alarmed. That was her reason for pain!

Anyway, we were back up at 7:30 a.m. to get our appointment with our pediatrician. Now the reason for our happiness... Carleigh's Picc Line was REMOVED!!!! YEAH!!!!!
No more IV! We are increasing her feedings to 32 ccs. Carleigh hasn't gained much weight in the past two weeks, only 3 ounces, which makes her 5 lbs. 8 ozs. The doctor gave us a special recipe in which we can make formula be 24 calories, rather than just 20. So, when she's not receiving milk, we can boost Enfamil up to 24 calories.

We're so happy the IV is gone. Now Miss Carleigh has no painful machines hooked to her. She's still got her oxygen, apnea monitor, and feeding tube. We're hoping the feeding tube will be next to go! :o)

What a day! Last night Carleigh began IV infusion antibiotics. (Rocephin)

Yesterday morning she surprised me with "diaper yuckies" that had run up into her Spina Bifida lesion. Our problem was that no one in our area would provide IV therapy to a baby.

Our case worker through our insurance arranged for us to live at the Ronald McDonald House for 5 days so Carleigh could receive her medicine. After some fast and furious packing, we arrived at the House. We played "phone tag" most of the day and eventually talked to the nurse who was going to administer the medication. As it turned out, WE are the ones that are administering her medication!! It's such a simple job that she taught us how and we got to come back home. I told John we were turning into qualified nurses! :o)

Carleigh also has had "eye gunkies". She had the problem since birth. In fact, we thought she was unable to open her right eye and it turned out that it was just sealed shut with the "gunkies!" She is now on eye drops (Tobramycin) to clear that up.

Mommy will sure be glad when the "diaper yuckies" and "eye gunkies" are gone!!