Mommy is almost cured! She still has her cough, but her voice is back!

I am congested and feeling yucky. It's hard to breathe when you have laryngomalacia and congestion!!

I am still eating like a "piggy girl" and Mommy hopes that I am gaining weight. I am getting really tall and it makes me look more skinny.

Guess what? B has PINK EYE! Mommy can't figure out how he got it because he doesn't go many places. She guesses he got it from going to the doctor with me. So now he is getting the medicine in his eyes. He screams and throws a fit. BOYS! I thought they were supposed to be tough!!

Tomorrow I get my splint. I'll let you know how it goes.

Happy Four-Months-Old Birthday to Carleigh!! We celebrated by coming home from the hospital yesterday! We love to spend our birthdays at home!!

I had planned on getting Carleigh's pictures made today, but since we just left the hospital, we'll wait until early next week.

As for Miss Carleigh, she's doing great! She came home from the hospital on one liter of oxygen. By yesterday afternoon though, we already had her turned back down to 1/2.

She is on a new machine called a pulse oximeter. It measures how much oxygen is saturated into her blood. It's a harmless machine that has a little probe that is taped to her foot, hand, big toe, or thumb. Our problem is that she is getting so active that the machine alarms a lot trying to find her. She won't keep those little feet still - which for nurses is a nuisance, but for us is a blessing! :o)

Carleigh is still pretty congested and has a lot of drainage. We have to suction her a lot, but she is not receiving breathing treatments at home.

I would like to take this time to thank everyone on the fifth floor of the hospital who helped care for Carleigh. I guess all things happen for a reason, as the hospital was given a chance to "redeem" themselves. We no longer hold a grudge for the hospital itself, just the certain people who refused to care for Carleigh as a newborn. Everyone we dealt with for this trip was positive and never mentioned the word "die". They were interested in knowing all about Carleigh, what all of her
little special areas are, what she likes, and what she dislikes. We believe in giving credit where credit is due, so THANKS to all of our FRIENDS on Pediatric Floor #5!! :o)

Also, Carleigh received the hearing test that she was denied as a newborn. We knew her hearing was not good, but we wanted to know exactly what we are dealing with. The test required Carleigh to be asleep for an hour and they put a series of clicks into her ears and measured the brain activity. Even though we do not have the results, we know that Carleigh pretty much requires 85 decibles to hear well. That is the equivalent of turning your tv up as loud as it will go. We don't know if hearing aids will help at this time, so for now, we're just talking a little louder and Carleigh is "talking" right back to us.

Carleigh's formula has been changed from Enfamil with Iron to Enfamil Lacto-free. She has been having extreme diaper rashes and the pediatrician thinks it is from the way she is processing her formula. If we take away the lactose, the diaper rash should disappear.

We are also supposed to give her five teaspoons of rice cereal a day (which is a lot) and add in baby food whenever we can. We are working with the pediatrician and a nutritionist to get Carleigh up to a nice weight. Our goal is the 25th percentile - she is currently under the 5th percentile. I think this is a large goal, especially considering that B is only on the 20th percentile!!

On Monday, Carleigh will have her vision test. This was another test denied to her in the hospital. It is also another test in which we are expecting the worst and praying for the best. We know her vision is impaired, we are praying that it's nothing big and that some cute, tiny glasses can fix.

Then on Tuesday, she will go to the pediatrician for a weight check and to an orthopedist. The orthopedist is a new one. We knew we would see him eventually because of Carleigh's bilateral clubfeet, but it appears on Carleigh's x-rays that she could have a displaced hip. If the hip is displaced, she will have to wear a special contraption to get it back into place.

This child never ceases to amaze me. With her, we take one step forward and two steps back. Through it all she is a trooper. I have NEVER seen such a small child go through so much - I guess that's why she qualifies as our little miracle. God must approve of what we are doing for Carleigh and Carleigh must love to be with us - because she is still our Angel on Earth - and we like it that way! :o)

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!!

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)

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!

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)