3/30/2000

Mommy is still sick. Yesterday her whole voice was almost gone!

I went to the orthopedist today. We got some news that we really didn't expect. My hip IS NOT dislocated! YIPPEE!! He said that little almost five-month-olds like me are pretty tricky with hips and sometimes positioning will make them appear dislocated. He said he can't guarantee that my hip will stay in place, but at least it looks good for now. :o)

As for my feet, well, that's a different story. I actually only have one clubfoot, my left one. My right foot has some big long name that Mommy can't remember. She only remembers "congenital" at the beginning of it. Which "congenital" means I was born with it. My left foot is clubbed so tightly that the doctor said that putting it into casts would do more damage than good. He said the skin on my feet and ankles is very tender and soft and putting it in casts wouldn't be good. Besides, it wouldn't be good to force my foot one way when my bones want to go the other way. As Mommy suspected, my left foot will have to have surgery someday.

Mommy expected me to get a cast on my right foot. She had already planned to pick yellow, as my Easter dress is yellow and she wanted them to match. WRONG! My right foot has to have surgery someday too. :o( The doctor said casting that foot wouldn't do any good because it would just fall back to its original position. (Mommy doesn't really understand why.) The doctor was very nice and said that he didn't want to do anything to risk my life. He said that I have already beat some numbers because I am almost five-months-old and still going strong. He doesn't want to do a surgery that will put my life at risk - which you all know what my heart thinks of surgeries! YIKES!! Anyway, he said that when I'm a big girl, if I can show him that I am going to walk, he will fix my feet. :o)

Now, of course, since my hip was good, that doesn't mean we can have all good news... Mommy had noticed that my leg between my knee and my ankle looked "funny". It kind of has a swoop in it. The doctor noticed it too and noticed that my knee will pop right out of socket! He said that is really bad for my ligaments and tendons, even if I like having my leg that way. When I start physical therapy (hopefully next week) my therapist has to make a splint that will keep my knee bent at a 20 degree angle. Also, the splint will run down to my foot (which is conveniently the left one) and will splint my foot a little to try to curve it back in the right direction. It won't correct the club, but it may make it where Mommy could get a shoe on my foot - if my feet would ever get big enough for shoes!

That's about all for my doctor visits. Thanks for praying for me!

Love,
Carleigh

3/29/2000

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!

Blake 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 Blake 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!!)

3/26/2000

Not a whole lot happening here at Carleigh Central. We did find that the correct spelling for our newest discovery about Carleigh is laryngomalacia. She is still taking Zantac for the laryngomalacia. We have noticed that it really acts up at night and early in the morning. I guess that makes sense. There are a lot of nights that I go to bed not feeling well and then in the mornings I wake up with a scratchy throat or stuffed up. The laryngomalacia really aggravates Carleigh. She will be breathing along just doing fine and then start screaming. She is getting so used to it that she can catch herself before she even turns purple! I feel she is doing so much better than she was. We bought her a "Teeny Weeny Boppy", which is a round thing that can go around her neck. Usually they are used for children 18 months and younger in their car seats. When they fall asleep, the Boppy keeps their head from falling forward or to the sides. We use the Boppy as a little neck roll for Carleigh. When her neck is positioned a certain way, her snoring stops and her laryngomalacia doesn't act up. We bought Carleigh's first swim suit this weekend! She is going to look like a little ballerina. It looks more like a ballerina dress than a swimsuit! It's pink with three little white roses on it. We have a little pool for Blake, so I'm sure Carleigh will enjoy "swimming" with him. We are not going to immerse her totally, just hands and feet, but I wanted her to look all "official" and be in a swimsuit. :o) This will be a busy week. Tuesday we go to the pediatrician and to the geneticist clinic. On Thursday we have an orthopedic appointment to check out her hip and her feet. We were supposed to have Spina Bifida Clinic on Wednesday, but we're not really sure about it. I have to call tomorrow. We also have Parents As Teachers scheduled for Wednesday AND we are supposed to start therapy (Physical, Occupational, and Speech) sometime soon. I'll post more Tuesday night after our appointments. Oh, we ended up in the Emergency Room again! This time it was for Blake, not Carleigh!! Blake is now the proud owner of two stitches IN HIS FACE! He fell and hit his face (about ½ inch from his eye at the top of his cheekbone) on the edge of a step. His stitches will be removed on Tuesday, when Carleigh sees the pediatrician.

3/21/2000

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)

3/19/2000

Carleigh is in the hospital again. Last night she was having episodes of breathing, then pausing, then making a snorting sound. When we would look at her after the "snort" her nose, mouth, and around her eyes were purple. Then she would start crying and breathing normally again.

We were told when she was born that her snorting was caused by her Chiari Malformation. I have since found that Trisomy 18 children sometimes have obstructions which cause them to snore. We called the doctors' office and the doctor on call said since she is having times that she is purple, we needed to take her to the emergency room. We arrived at the hospital at about 9 p.m. and were in the ER until around midnight. Then they admitted her and moved her to the 5th floor (pediatrics). Her x-rays show no sign of obstruction, but she does have narrow airways. That doesn't surprise me at all, because all of her is petite! So now we're just playing the waiting game until tomorrow when our pediatrician comes.

We are expecting to get to bring Carleigh home tomorrow, but it will be up to the pediatrician on whether or not Carleigh sees an Ear/nose/throat specialist. I am home tonight with Blake. We don't want him to feel left out. :o)

Oh, and Carleigh is up to 8 lbs. 5 ozs.! She has gained 1 ounce each day since we last saw the pediatrician! Hopefully she's on her weight gaining climb again!!

Keep Miss Carleigh in your thoughts and prayers, as I know you all already do. We'll be back home soon - we hope!!

3/16/2000

Yes, another post! Tonight between 6:30 and 7:00 p.m. Carleigh had her first REAL bath!! She found it enjoyable at first, but then started SCREAMING at the top of her lungs!! I think she got a little chilled. She's used to being covered up with the towel while I bathe her.

I've made a decision about her SB lesion. I tried today to keep the dressing off it. I did put a piece of gauze into her diaper for some extra padding. When I got ready to give her a bath, I noticed her SB site was red. It wasn't damaged or anything, but the color of it reminded me of one of the painful "strawberry" burns you get on your knees if you fall on a gym floor. I don't want the SB to get irritated, so we are going to continue to do the gauze, sterile water, Saran Wrap thing -- even though Carleigh did not appear to be hurting at all. We've worked hard taking care of that SB and we don't ever want to go back to the way it was!
Yesterday was a good visit with our neurosurgeon. He said that Carleigh's shunt is looking good. He also looked at her back and said it was good too! I had a few questions for him and got some great answers. Carleigh's back is healed so well that she is going to finally be able to have her first REAL bath!! She has only had sponge baths since birth because of her open SB and now, at four months old, she's going to get a REAL bath!! I was going to do it this morning, but need to wait till tonight when John is off work so we can do pictures, video, etc. This is a super special moment for us!! We had expected to give Carleigh sponge baths forever - even when she's not a baby anymore!!

Also, we don't have to cover her back with the gauze, sterile water, and Saran Wrap anymore!! We have done that for so long that we're afraid to change anything. I think I will continue to put a piece of gauze on it, just to provide extra padding. Dr. Park said to be really careful and not scratch her SB. Most of it is covered with thick skin, but part of it still has thin skin. If we scratch the skin, her spinal fluid is right under there and will start leaking again, putting her back into a major infection risk. Also, if fluid can leak from her back, it will cause major problems with her shunt.

Her shunt is looking so good that we don't have to go back to the neurosurgeon for three months. So we'll continue to pray that the little shunt keeps doing its job. :o)

3/14/2000

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)

3/13/2000

We went to an orthopedist today. Carleigh does have a dislocated hip - it's her left one, not the right one. The doctor mentioned a Pavlik harness that would go onto Carleigh's body and attempt to put her hip back into place. His concern, though, was with her Spina Bifida. I guess putting her legs into the harness could bother her back. He wants us to talk to our neurosurgeon on Wednesday and ask him which orthopedist he works with. They will make the decision at St. Louis Children's whether or not to do the Pavlik harness.

As for the clubfeet, he said that we need to keep working with them and keeping them soft. They don't do surgery for clubfeet until age one, but it is possible that Carleigh will have to have a cast on her left foot. That will also be left for the doctor at St. Louis to decide. Carleigh is too small for AFO's. It would be nice if she could fit into them as they are removable braces, rather than casts.

Tomorrow we see the pediatric opthamologist and the pediatrician. Please think "big numbers" as Carleigh will be weighed tomorrow. We will be REALLY happy if she is 8 lbs., 6 ozs. or more!!!

3/11/2000

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.

3/08/2000

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 Blake 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)

3/04/2000

This is what happened to Carleigh - as well as how she is doing now:

Carleigh had a doctor's appt. on Thursday morning. When we put her on the scale, she had gained a big fat ZERO!! I just knew the ped. was going to be on our cases, but she wasn't. I explained what had been happening since we had come home from the shunt revision.

Carleigh has been congested since being pulled from the ventilator. I called the doc's office and our doc had hurt our back and wasn't there, so I had to talk to a different doc. He didn't seem too concerned and put her on Delsum, which didn't do any good. (That was on Wed. the 16th.) By Sunday night, she had the runniest nose I had ever seen. Monday morning I called back to the doc's office and was stuck with the same idiot because our doc still wasn't there. I told him of her symptoms and that I was very concerned about RSV because I knew it was very serious in babies and would be even more serious with her. He said it didn't sound like RSV to him because she had no fever or wheezing and told me if she did get a fever he would have to see her.

Maybe I haven't been paying attention, but I was unaware that there is a "snot test" for RSV. Had I known, I would have insisted on a test. So here we sat for two weeks with a congested, snotty kid until our appt. with our pediatrician. The FIRST THING she did was a chest x-ray and a RSV test.

So, on Thursday evening, Carleigh was transported to the hospital via ambulance - RSV positive! The idiot doctor that told us she didn't have it (without doing a test) currently rates right up there with the idiots from the NICU.

Oh, and by the way, she is in the hospital that she was born in. My heart sank when we knew she had to go there. I have watched them like a hawk. They consider her latex precautions an actual allergy and are extremely careful. We have had a wonderful experience with them. They are treating her like "any other" baby with RSV. She started in the PICU and was moved to the floor the next day. It's amazing what getting into an elevator and riding up one floor can do for you!!

Now about Miss Carleigh... Her chest x-rays are clear. She is not showing any signs of pneumonia. (THANK GOODNESS!!) She has an NG tube, but has almost worked her way back up to normal feeds, and I'm predicting they will remove the tube tomorrow. She was so congested that she couldn't even suck a bottle on Friday morning. She receives breathing treatments every three hours. Otherwise, she's normal little Carleigh - happy, awake, and "talking" until 3 a.m.! Thanks for your extra prayers and please keep saying them until our little one is safely home.

3/02/2000

I can't make this long. An ambulance is on the way to pick up Carleigh. She has RSV and has to be monitored in intensive care in the hospital.

All we know for now is that it hasn't caused pneumonia, but with her heart problems, they feel the need to monitor her closely. Please say an extra prayer for us and I'll update again as soon as we're home.