Good Weekend (728-7/30)

Cedie had a good weekend. She was very happy all weekend and she had no troubles at all. After she came home from the hospital Wednesday night, you would never guess that she had been to the OR.

She has learned a new way to get out of "tummy time". Instead of getting mad or crying, she just would just roll herself right back over to her back! It became a game on Sunday morning. She thought it was so funny! (Little did she know that the rolling skill is just as important as spending time on your tummy :-)

Surgery Day

Believe it or not: CEDIE IS BACK HOME! We managed to get in, do our surgeries, and get out within 22 hours! We had a lot of waiting to do this morning (first they changed our time to 8:45am, then to 10, then back to the orignal time, and then to 1pm) so we took some pics to pass the time. As you can see, Cedie was in a good mood. The first 4 pictures are prior to surgery and the last was after she came back from surgery.

Results: The ear canal on the left side was too tiny to get a tube in. (ironically, she hears better out of that ear...) Once they cleared all the fluid and wax off of the right ear, they found that the tube was still in place and was functional.

Her vocal cords are still paralyzed. Her doctor still holds out hope that they will one day be repaired. He will check them again in a year. -He believes she needs a year to be LEFT ALONE and grow :)

Her trachea looks good. He said that once the vocal cords repair themselves, it will be important that her trachea is in good shape so that we can take out the trach tube.

While they were doing the scope procedures, they found yet another rarity in our little girl (you'd think she has enough :-). It turns out that one of her carotid arteries (where you would feel your pulse in your neck) is serpintine shaped- meaning it makes a S and detours by her throat. This is a very rare thing. There is nothing that they will do about it at this point. It would only become an issue if we ever have to look at taking her tonsils out or any other throat surgery. I'll have to get with my CHARGE friends and see if this is yet another Chargeland twist.

Everyone was shocked at how well she did after the procedures. She only needed increase O2 for 15 minutes or so and they never had to make any other vent changes. Since she was doing so well, they decided to let her go home! Go Cedie!

It is almost midnight and she has been home for almost 6 hours. So far she has slept most of the time but is otherwise doing well. I've checked her temp twice- no fever, and she is handling her feeds well. Hopefully this will continue. Her nurse is here to monitor her for the rest of the night. She's in good hands :-)

Tuesday, 7/25/06

I just left Cedie in TCU for the night and I am already missing her! So, I decided to write about her again on the blog.

We had a good afternoon. First, Ms. Leslie, an Occupational Therapist, came over to do an evaluation on Cedie. She brought a bag of neat toys and Cedie had fun exploring (i.e. putting them in her mouth!) each one. She especially like the wooden circular disks. They must have felt good on her teeth because she didn't want to give them back! She can be really strong when she wants to be :-)

After Ms. Leslie left, we had our session with Ms. Debbie, our TIPS parent advisor. She brought a really cool musical alligator (see pics above). Once Cedie got the hang of it, she loved it. We were both impressed at how fast she picked it up. The second picture is blurry because she was in mid swing! Maybe she will be a musician :-)

Right before we left for LBCH, one of our favorite TCU nurses (used to be Cedie's primary weekend nurse) came by the house to bring Cedie a late birthday present. It was a beautiful bracelet. It fit Cedie really well. Thanks!

Well, I am going to go say a prayer for my little angel in hopes that all goes well tomorrow and then I'm going to bed. I plan to be back at Cedie's side before she wakes up in the morning. I will post from the hospital at some point tomorrow after her surgery.

Surgeries Are A Go

We are all set to have our surgeries done tomorrow. We are on the surgery schedule for 11:45 am. (we take this time with a grain of salt- they have always been either late or early, never on time)

We are all set to "check into" TCU tonight. Her bags are packed and we have the doctor's orders.

However, first, we have a couple fun appointments at the house. Our new Occupational Therapist is coming to work with Cedie at 2:45 and Ms. Debbie, our parental advisor, will come at 4:00 for our TIPS session. Cedie will certainly be tired afterwards so that should help her sleep tonight in the unit.

Wish her luck!

New Luggage for Cedie

Nana and I found the CUTEST luggage for Cedie today! We thought it would make the little trips to the hospital (and hopefully out of town one day) easier. We will be showing it off to all of our TCU friends on Tuesday night when we check back in for our surgeries. (Wednesday we will be getting our PE Tubes replaced, a larynoscopy procedure to check on her stinosis and a broncoscopy procedure to check on her paralyzed vocal cords.- surgical procedures 10, 11, & 12 sigh..)

We had some friends over for dinner tonight. Dylan got to play with two of his best buddies, Grant and Christian, while Cedie got to meet baby Aaron. So many boys! Grant's mom (Dylan and Cedie's Godmother) is expecting and we are SO hoping that its a girl so that Cedie will have a girl on her side! Chris grew up with all 3 of the kiddos' dads so its fun that our kids will grow up together too.

First TIPS Session- 7/21/06

This afternoon we got to meet Ms. Debbie, our parent advisor with the TIPS (TN Infant Parent Services) program. Our time is normally Tuesdays from 4 to 5 but since we were stuck downtown at the Endocrinologists this Tuesday, we rescheduled for today.

Ms. Debbie was great. She has tons of expierience working with special needs children and she has even worked with a CHARGE patient(in NY)! It was so refreshing to meet someone who had actual knowledge of CHARGE and its many complicatons.

She brought a bag full of neat learning toys that Cedie (and Dylan!) found quite fun! Cedie cooperated very well with her and even showed out (in a good way) for her as well.

Cedie has changed so much in the 6 weeks that she has been home. She proved it today in how easy going she was when she was being worked! I was so proud of her and it makes me that more excited to get her OT, PT, and ST going!

Our "homework" for the week is to work on tummy time and encourage "baby pushups." Ms. Debbie showed us some tricks to make this a little easier on Cedie. I think this program, along with other therapies, is really going to help Cedie make up for all her lost time.

The Weather Takes Its Toll-7/19/06

I think our long trip to the doctor on Tuesday in the 100+ degree weather took its toll on Cedie. Tuesday night she was up alot coughing but we didn't get much when we suctioned her. She continued with the unproductive cough throughout the morning Wednesday and you could tell it was making her miserable. Her O2 sats were good and she wasn't weezing- two good signs. The cough was just keeping her awake. She finally was able to get a 1.5 hour nap in and she woke up feeling much better. She slept alot, on and off, up until 8 and then she slept all night long- the cough had gone.

She was all smiles this morning and looking/acting much more like her normal and happy self. I have decided that she will not leave the house again until next Tuesday night (when we go back to LBCH for her surgeries). This insane weather is just too harsh for her and we want her feeling her best going into surgery.

7/18/06- Dr Appt-Endocrinology

Cedie, her nurse, and I went to see her endocrinologist today. We were there from 1:15 to 5:15. Sigh.... However, Cedie was in such good spirits so we passed the time by taking these cute pictures of her and her new shoes (size 1 and still to big but absolutely adorable). Cedie was in such a good mood, up until it was time to get her blood work done :-(

The appointment went well. The doctor eased my mind on a couple issues. He was a little concerned about her lack of growth but wanted to concentrate on her thyroid function at this point. It is most critical during the first three years of life. He had blood drawn to check her thyroid levels as well as a couple other levels. He wants us to change her thyroid medicine (the brand) and he may/may not change the strength once we get the test results back. We will see him again in 2 months (Sept).

Monday , 7/17/06

Cedie had a good day. She slept alot in the morning but she stayed up all afternoon. I moved her into the kitchen to watch me cook dinner. It was her first time hanging out in there and she was facinated! She always amazes me with how aware she is and how curious she is about her surroundings. Once dinner was made Cedie sat in her high chair at the table at watched Dylan and I eat! I thanked God that she was able to be home again and was feeling well enough to entertain Dylan and I ate the table with her "coo"s and her blowing kisses.

Our endocronology appointment is actually tomorrow, not Wednesday. I am not sure what to expect but I would imagine they will be testing her thyroid levels and make sure she is on the right meds.

Also tomorrow, we have our first parent advisor appointment (this is a program offered through the Tennessee Infant Parent Services program). She will be coming to work with Cedie and I every Tuesday afternoon. She has a specialized curriculum that we will work through to help Cedie grow developementally. She will even leave us with "homework" each week- this will be a specific skill or task that we will work on with Cedie throughout the week. This is in addition to her 3 therapies (physical, occupational, and speech) that will hopefully start soon.

Finally, I spoke with her pediatrician's office, her pulmonologist's office, and her ENT's office. Her pediatrician says unless she gets to not feeling well again, we don't need to see her until after the surgeries next week. The earliest we could get an appointment with her pulmonologist was Aug 17th. I am very frustrated with this because we won't be able to start weening her from the vent (even though she is definitely ready and able) until we see him. Her ENT doctor says we will go forth with her surgeries as scheduled.

Cedie Is Back Home

Cedie got to come back home late Friday afternoon. She was actually feeling 100% better by Wednesday but they wanted to watch her for a couple days to make sure she was totally over it this time. We tried to get her surgeries done while we were there but her surgeon was out of town and since she's definitely not an "average" kiddo that any surgeon could just pick up, we will wait. We will just check back in on the night of the 25th.

It was fun seeing some of our favorite nurses and LBCH personel again. It always amazes me that so many people, besides the TCU nurses, know and care about Cedie. I ran into people walking down the hall that would know Cedie and ask how she has been doing. Many told me that they follow her on this blog. It means so much to us that these people, who meet so many special children everyday, would not only remember our daughter but also follow her when she is at home! Thanks to you all!

Cedie had a relaxing weekend. She met 2 of her new home nurses (we switched agencies) and they were both great. She woke up Saturday morning with a big smile on her face. I looked at her on the camera monitor and saw her beautiful smile as she was "dancing" in her bed. There is no better way to start the day!

We have an appointment with her endocronologist on Wednesday. We may have to see her pediatrician and pulmonologist this week too.

Update from LBCH

Cedie is feeling much better. They were able to tyake her back off the O2 (back to 21%/room air) yesterday around lunch time. They also decreased her rate from 16 to 14 (12 is her norm). They took a blood gas at 6 and it looked perfect. They will put her back on her normal rate in the morning and watch her to make sure she handles that as well. They think she will be going home no later than Friday morning.

She is in good spirits for the most part. She has gotten used to someone always being with her and so she is clinging to me with all her might. Unless she is tired, she really fights me putting her down in the bed. As long as someone is around she is back to her playful self. She had fun in a swing and she played around on a mat with some of her toys. I am sure though that she will be really glad to be home.

Mock Family Pics 2006 (part 2)

Mock Family Pics 2006

Back in TCU

Sorry it has been awhile since we last post. We have had a hard time of t lately AND our internet isn't working at the house (they are supposed to come fix it Wednesday). We had MAJOR nursing issues this weekend so mommy was very busy. Cedie had a rough morning Sunday morning (thought we were gonna have to rush to the ER for a few minutes). However, Cedie was much better Sunday afternoon. We even were able to keep our picture appointment! I will try to post the family pics soon. They turned out so good!

Then, Monday morning, Cedie had trouble similar to Sunday, again. But this time she was unable to bring her sats up, she was retracting really hard, and her nose was majorly flaring. So, I took her in to see her pediatrician ASAP. Dr. Best gave her two breathing treatments and still we could not get her sats above 92 (not good).

So, we were readmitted to TCU (luckily they had a bed so we could bypass ICU) yesterday afternoon. They had to put her on 40% O2 and start her on some antibiotics. She was so scared/upset that she didn't let me put her down until around 9:30 when she was totally passed out! She slept really good last night and seems to be in good spirits this morning. Hopefully we will find out what is going on, get her back off the O2, and go home soon!

7/5/06- Pediatrician Appt

We saw Dr. best today. We had to do a weight check and follow up from last weeks hospital stay. She has lost a few grams (2 weeks ago she was 6.81, this week she is 6.77). However, since she was sick and her antibiotic torn up her tummy, the weight lost was expected. We will go back the first week of August (week after her next surgeries).

We didn't do much else today. Her nurse called in last night and Cedie kept her mommy busy every 1 & 1/2 to 2 hours throughout the night! I can't complain though because it is better than her being in the hospital! Plus she is soooooo cute when she is sleeping and snoring!

4th of July 2006- First Holiday at Home!

Today marked the first holiday (besides her 1st birthday) that Cedie was able to celebrate at home! Hopefully this will be a trend for this year! I thought about 4th of July 2005 and how I was the only mom visiting in the NICU. Cedie was so small then and her future was so uncertain. My how things have changed!

Tonight Cedie watched her daddy, her G-daddy, her aunt Mel and her big brother do fireworks. We put her in her chair and placed her right in front of our big kitchen window. I think she really enjoyed it (until she fell asleep). :-) She kept making her little noises whenever they lit something up.

Cedie has a busy next few days. She sees her pediatrician tomorrow. She has her big therapy meeting Thursday (we will discuss her delvelopmental goals and her therapy schedules). Saturday we hope to finally get those family pictures done that mommy has been waiting over a year for.

July 3rd, 2006

Today I used some of Cedie's birthday money and got her a new doll and a new toy. The Ocean Wonders Kick and Crawl Aquarium is going to be great therapy for her. She normally hates tummy time but when we laid her on this she was so interested at the toys, mirror, and fabric that she didn't even notice that she was on her tummy. She was so happy playing on it that I left her alone until she fell asleep! Also, when I laid her on her back, she tried really hard to roll over, several times. She made it to her side and if she could just figure out what to do with her arm she would have it! I am so excited with the progress she is making! I definitely recommend this toy to anyone with an infant!

Also, Cedie's Aunt Linda and Uncle Dan came all the way from Florida to meet our little angel. We had a great visit!

7/2/06- Birthday Party

Me-Maw's (Chris mom) Sunday School class had a baby shower/homecoming celebration/birthday party for Cedie today. She got some really cute stuff and some much needed stuff. She was in a great mood and throughly enjoyed the cake! She has just discovered that sweets can be good to swallow and she went to town!

Thank you Ellendale Baptist Church and Larry Vaughn's & Darrell Overstreet's Sunday School Classes.

7/1/06-Cute Pic

Cedie was so tuckered out tonight that she fell asleep in the bath tub. I could not resist a picture :-)

Happy 29th Aniversary to Nana and G-daddy (Jenn's parents) and happy birthday to their dog Asta.