A Poem For Cedie

Why me?
What did i do?
To deserve an honor as special as you?
What is it, Lord?
What did You see?
That led You to give this perfection to me?
Was it something I said? Is it something I've done?
Am I worthy to love this untouchable one?
I know this is a gift, though i'm not very smart
A gift that I treasure down deep in my heart
and as I look upon you when your sleeping so still
I can see that you're perfectly made in His will
well... I just had to tell you on this havoc-filled day
one thing that I'm grateful for in every way
in all of this massive and havoc-filled place
You are my direction, love, and saving grace.
copyright Nichole Ray 2006

Someone on my CHARGE listserv posted this and I thought it was so beautiful and so appropriate for these miracle babies.

Although life with little Miss Cedie Lynn definitely has its crazy moments with its highs and lows, I would not trade it or her for anything on this Earth. She has touched our lives and made it better in so many ways. Words can not express how in love I am with her and how special she is to me.

6/29/06-Another Surgery Needed

We had an appointment with Cedie's ENT doc this morning. Turns out that the reason she got an ear infection is that her tubes (put in this past Feb) are no longer working. She has fluid build up in both ears. So, he decided to go ahead and schedule surgical procedures numbers 10, 11, and 12. He decided that if she will be under anesthesia for the tubes anyway he will go ahead and do the larynoscopy procedure to check on her stinosis and a broncoscopy procedure to check on her paralyzed vocal cords (she has to be completely sedated for both). Our surgery date is July 26.

On a happier note, I finally found a food that Cedie won't spit out and that she actually liked!! Amy Sullivan (friend from our church) brought us dinner tonight. She also brought some banana pudding. I let Cedie try and she loved it! I was so excited to see her eat like a big girl!

Tonight we had to call in reinforcements (thank you so much Karen) to deal with Cedie's poor bottom. The antibiotic she is on has made her already bad diaper rash 10 times worse. I got her in an oatmeal bath and Karen mixed up her special concoction. Hopefully we can get it back under control.

6/28/06- Back Home Again

We are now back at home after our two day stay at our second home, LBCH. Cedie has an ear infection and a viral tracheaitis. We were sent home with amoxicilin and tylenol with orders to go see the ENT doctor tomorrow. Sorry I couldn't post sooner. So here's what happened over the past few days:

Saturday night we did not have a nurse. It was a rough night because Cedie didn't sleep well. Sunday we managed to go to church but we came back home and just vegged out - we didn't have a day nurse for Sunday either. As Sunday went on, Cedie slept alot but her breathing rate was faster than normal and she kept waking up crying. She was only content when we held her or when she was asleep.

Monday she ran low fevers all day (around 100 or so). Her breathing rate was even faster than it was on Sunday. Also, her eyes were constantly draining yellow goo. I called the pulmonologist and her PCP. By the time they called back it was 4:30pm and it was too late for my PCP to see us. The pulmonologist wanted a blood gas and a chest x-ray done right away in case she developing pneumonia or something. He told us to take her to the ER to have those two things done since we couldn't get to Dr. Best.

So we loaded her up with the intention of only being gone a few hours. We didn't take the power cord for the vent (the marine battery lasts 4 hours and the internal one lasts 45 minutes). We didn't bring meds or extra clothes. The doctor called ahead for us so we didn't have to wait with all the other children and that was a plus. They took the blood gas and it looked great. They looked at the x-ray and it looked like her previous one. However, they wanted to find out why she was running fever(it was 102 when we got there), breathing fast, and have so much eye gunk. They took blood, urine and secretion (from trach and eyes) cultures. Then they said they needed to watch her over night.

They didn't have any beds open in TCU and she is too much to go to the floor so she had to go to ICU. They stuck her in a spot right in the middle and I then knew there was no way I could leave her alone. She had a really sweet nurse (thanks Amanda) but I was afraid some trauma would wake her up and she wouldn't know where she was and what was going on. Therefore, I stayed up with her all night. At 2:30am, my head was spinning so I sat in a recliner in the waiting room and tried to close my eyes. I gave up on that at 5am and went back to Cedie. Around 12pm Karen (one of Cedie's nurses from TCU) came up there to rock Cedie while I left to take a shower and a much needed power nap.

I thought we'd leave after rounds but the docs decided they wanted to wait for the culture results to come back. They take 24 hours. Unfortunately, the 24 hours wouldn't end until after the docs are done for the day. Fortunately, a spot opened up in TCU so that at least she could spend the night in TCU where she would have her own room and the nurses & staff would all know her. Everyone was excited to see Cedie and kept talking about how much she has grown. It was nice seeing everyone again (even though a quick visit minus all the sticks and xrays would have been nicer :-))

Overall it wasn't so bad. I really broke down in the ER when they said we had to stay because all I could think of was back in August when they said we'd get the trach, stay a day or so more and then be on our way. As you all know, that was certainly not the case. However, this time it really was only a couple nights.

She is now resting in her bed and she looks much happier. She knows this is were she is supposed to be.

Monday, 6/25/06- Re-admit

Cedie was re-admitted to ICU tonight. We hope to only be here a couple days. They suspect she has tracheitis but we have to wait 24 hours for her culture results to come back. I am staying with her and I will try to post more later.

Saturday, 6/24/06- Dylan's T-Ball Awards

Dylan had his championship T-Ball game today. It was a great game. They lost by 2. However, he still got a medal for making it to the last round. They finished 2nd in their league bracket and 4th in the league.

After the game they had an awards party at Pizza Hut. It was too hot for Cedie to go to the game but I went and picked her up afterwards and took her to the party. She had fun. We even gave her a piece of pizza crust to chew on. She was so tired when we got home that she fell asleep while doing some "tummy time"!

Friday, 6/23/06- Cardio Appt

We had an appointment with her cardiologist today. He is a great doctor (one of our favorites). He was impressed at how well she has done at home thus far. Her O2 sat number wasn't great but I told him at home when we watch it at night it is higher. He was also a little concerned with her elavated blood pressure. It is running a little higher than he would like. He wants to increase her heart meds a little but he will consult with her pulmonologist and the pharmacist before he makes any changes. Its important that the cardiologist and the pulomonologist work closely together because it is the combination of her heart and lung problems that have her on the vent, not one more than the other. Overall, he felt that she is doing good and he doesn't feel that he needs to see her until December unless Dr. S wants an echo or a repeat heart cath done before then.

The little Minnie-skirt outfit she wore today was absolutely adorable! Thanks Aunt Lynda!

Wednesday, 6/21/06

We had another great day. She was very happy all day. Since she was in such a good mood this afternoon, we did some physical therapy. Afterwards, I sat her up on my lap and she posed for some pictures in her cute new clothes.
We were supposed to go see her pulmonologist in the morning but he cancelled on us. It has been rescheduled for the second week of July. We still have an appointment with the cardiologist on Friday.

Tuesday, 6/20/06

Cedie had a good day today.
She wore a pretty little Gap outfit that she got from her Aunt Kim, Uncle Jim, Tarrah, and Dalton. Thanks guys!

Monday 6/19/06- busy day

Cedie had 2 doctor's appointments today.

Our first appt was with Dr. Best (her pediatrician). She was pleased with how well Cedie looked. Cedie weighed 6.85 kg (15.1 lbs) (gain!) and her length was 23 & 3/4 inches. She "sounded" great as well. Cedie had to get 2 shots, one in each thigh :-(. She will have to get 2 more at 15 months old. We will see Dr. Best again in 2 weeks for another check up.

Between appointments Cedie went up to mommy's office and had a nice nap in her new pack-n- play while mom and nurse Lena ate some lunch.

Our second appt was with Dr. Eubanks (the surgeon who did her skin graft and lung biopsy). Our appt was at 2:15. It was warm in the waiting room and Cedie was pretty fussy. She threw a big fit around 3:20 (yes, we were STILL waiting). We had to suction her right there and give her a few puffs of O2. Needless to say, after that a room magically became available. The doctor was right in. He looked at her graft site, donor site, and biopsy site. All was well. We will not have to follow up with him again unless we have a problem. That's one (of 8) that we can mark off our list :)

Cedie is wore out tonight. We were going to watch Daddy play volleyball tonight but I think instead we will take it easy at home.

Father's Day 2006 (6/18/06) - Tooth #4

We woke up to tooth number 4! (that may be why she was so fussy at the end of her party) We now have 2 on top and 2 on bottom. That's 4 teeth in less than 2 weeks! Bless her heart!

Cedie and Dylan wish to say Happy Father's Day to the best Daddy Ever! Also, happy father's day to G-daddy, Grandpa, and P-paw.

We did a lot of nothing all day today. We didn't have a nurse from 9am to 9pm so we just relaxed all day. I put away all of her new clothes and she and Dylan explored all of her new toys. Daddy watched the race and slept :-) Cedie was a little needy today but she seems to not have any ill effects from her big day yesterday.

Tomorrow we have 2 doctor appointments.

Saturday, 6/17/06- PARTY DAY

The day started out rough. Our nurse didn't show up last night and Cedie's teeth were really bothering her (or maybe she was just excited about her birthday party :-) ). Needless to say, mom, dad, and Cedie got very little rest. We had lots to do to get ready for Cedie's party. We let Cedie rest in her bed the majority of the morning while we ran around like crazy!

Cedie's party went well. She had lots of guests and she tolerated it better than expected. She got some really beautiful clothes and lots of cute toys. Everyone just gushed over how well she looked :-) I think everyone, including Cedie, had a great time.

Mrs. Mary Jane Gullett (member of our church) made Cedie the most beautiful cakes! She made a big one for Cedie's guest and a small one just for Cedie! They were delicious! Thank you Mrs. Gullett.

Tim Dent and Cedie's daddy made the BEST BBQ! Everything was perfect! Thanks guys!

Nana, Mee-maw, and Granny brought our sides. Yummy! Thanks Moms!

Ellendale Baptist Church let us borrow the tables and the folding chairs. Thank you!

And last but not least, THANK YOU to all our family and friends who made the party. Thank you for your love and support (and the presents :-) )

Happy Birthday Cedie - 6/16/06

Happy Birthday To Our Miracle Baby!!!

Wednesday, 6/14/06

TWO MORE DAYS UNTIL CEDIE'S 1ST BIRTHDAY!!!!!!!!!!!!!!!!!!!!!!!

Today was our last day to have 24 hour nursing. Starting tomorrow we will have nursing for 16 hours per day.

Cedie was a little irritable today. She was in one of her "just leave me alone" moods for the majority of the day. I think her teeth were bothering her a bit. She started to spike a temp earlier tonight so we gave her Tylenol and we will watch her closely.

Also, I want to say a big THANK YOU to Nurse Kristy! She has made these first two weeks at home much easier for us all. We wish you well as you journey back home to Nashville.

Pictures from our last days at LeBonheur

Tuesday, 6/13/06- Test Results

They called me with Cedie's test results today. Her best area was social skills (which I would have to say have improved tremendously in the past two weeks). She scored at a 7 month old level. Her worst area was gross motor. It was at 4 months. The other 4 areas were at a 5 month level. They told us not to get too discouraged. The lady said that they used to take into account the time hospitalized. If they did that then she is ahead of the game because she has spent less than 1 month outside of a hospital. They don't even take prematurity into account anymore. If they did, her adjusted age would be 10 1/2 months old. Anyhow, I have to tell myself that these are just numbers. Cedie will progress at her own rate. Her first year was taken away from her because of her illnesses but she has time to catch up and all the support she can stand. :-) She has a wonderful support system of family, friends, church, and therapists (coming soon anyway). Cedie will do wonderful things, just wait!

Monday, 6/12/06- Developmental Test Today

Cedie had a test today. A nice lady from TIPS came out to the house. She had lots of questions for me and she observed Cedie and me playing together. Then she brought out several sheets of paper that had all of these skills listed on them. It was a developmental test. Its purpose is to judge where Cedie is in 6 different areas: social skills, adaptive skills, gross motor, fine motor, communication skills, and cognative abilities. The whole process took a little over one hour. Cedie had a good nap and so she was in a good mood and she tolerated everything pretty good. Cedie even surprized me a couple times with things I didn't think she could do. All in all I think it went well. We will know tomorrow.

Sunday, 6/11/06- First Time At Church

Today Cedie went to her church, Ellendale Babptist Church, for the first time. She has been on their prayer list since her birth and everyone was anxious to meet her. At the beginning of the service she got a church wide round of applause and the preacher said she was a miracle baby. She loved listening to the choir. She raised her hands and smiled big for each song. She took a power nap during the sermon but was wide awake again once they started singing again. At the closing, the preacher remarked again about how great it was that Cedie could attend. She did not fuss once and her alarms never went off.

She wore the dress that nurse Nicole gave her and the bracelet that nurse Karen gave her. She was beautiful.

Tonight she took her first trip to Nana's house to celebrate her G-Daddy's birthday. She did really good. Once it got to be 8pm (her bed time) she was out like a light and she never woke up, even when we took her home and put her in her bed. It was a great day.

Saturday, 6/10/06- We Got Another One!

Cedie's 2nd Tooth Came Today! She now has two front top teeth!

Cedie stayed indoors all day. The high today was 97 and it was code "orange"- the most dangerous kind of climate for the "respiratory challenged" :-) We stilled found lots of things to play though!

After I put her to bed for the night, I watched her do her "settling down routine". I thought of her nurse Karen and how she would try to describe this routine to me some nights when I was missing my baby girl. I was so grateful that I could witness this in our house! There were times when I couldn't see this day coming. I know Karen misses watching this little angel sleep so I took this picture. Enjoy and feel free to stop by any night (or day).

Five days to go until the BIG BIRTHDAY #1!!!!!!

Thursday 6/8/06- Busy Day

We had a 10am appointment downtown at Lebonheur today. Her nurse and I packed everything up and left the house with Cedie at 9am. We were signing in at the clinic at 9:45. We waited for 1 & 1/2 hrs in the waiting room, then got put in a room to wait some more. They checked her CO2 (looked great) and her O2 sats (not as great) and they checked her weight/BP/Temp. Her weight was 6.65 kg (her discharge papers said she was 7.3 last Wed). The pulmonologist saw her and he seemed pleased with her condition. He didn't make any changes and said to come back on the 22nd. Our discharge order for nursing was 24/7 for 2 weeks and then 16 hours thereafter. I asked the doctor today if we could extend the 24/7 because of how involved Cedie's care is but he isn't prepared to do that at this time. We left out of there just before 2pm. Next time we will take us a lunch!

Two of Cedie's nurses from TCU came to see her today. We all had a nice visit. It was so good to see them again. They have been a major part of our lives for the last year.

Tonight I found out my nurse will be late. She won't be arriving until 12am or so. So Chris and I are taking the 7-12 shift tonight. So far so good. Hopefully it will be a good night.

Wednesday, 6/7/06- Scary Morning but WE HAVE A TOOTH

Cedie had a rough night. She hardly slept and she just wasn't herself. I called her pediatrician, pulmonologist, respiratory therapist, and anyone else I could think of. Her pediatrician said to come in immediately. So, the nurse and I frantically rushed around to get her dressed (and me) and get her and all of her equipment out the door and into the car. Her pulmonologist called as I was about to lock the door and he agreed that we needed to go to the doctor.

As we were waiting for the doctor to see us, Cedie was happy as can be. She was smiling, making her noises, and blowing kisses. (what is it about dr's offices that make your kids better and make parents look like liars?). Anyway, she was also trying to eat my arm and I noticed a little poke. I looked in her mouth and to my surprize SHE HAD A TOOTH! It is her top, front, right tooth!

The doctor checked her out and found that she sounded like she had a lot of fluid on her left lung. She sent us over to LeBonheur to get an X-ray. We were told that if the x-ray showed anything significant, we would have to be re-admitted. Luckily, the x-ray results came back with little/no change from her last x-ray! So, we were sent home and advised to come tomorrow at 10am to see the pulmonologist.

We had an eye doctor visit scheduled for today but I cancelled it. I just couldn't make her go through an eye exam after the night/day she had.

Tuesday, 6/6/06- Trach Scare/Rough Night

Cedie's had a trach scare today. She was in her room alone when I heard her screaming. I ran to her room (the nurse was in the kitchen) and found that her trach was completely out and she was starting to turn colors. I quickly replaced the trach and gave her some O2. Later, after her nap, I had to put in a sterile trach. That is alot of trauma for one day. She seemed ok (not as happy as she has been) but she didn't take a nap.
She couldn't really get to sleep tonight. She was real irritable, clammy, and she was coughing alot. Her vent alarms went off several times and her apnea/heart monitor went off twice.

Monday, 6/5/06- Cedie's Invitations

Today I worked on Cedie's Homecoming/First Birthday Celebration invitations. Her party will be on SATURDAY JUNE 17th. We are having a Bar-B-Que! We said that people may start arriving for the party any time after 4:30 and we will open presents and give Cedie her cake at 6:30. It should be a blast. I am mailing out all the invitations that I had an address for tomorrow. If you are local and you do not get yours by this Friday, please email me at jennlmock@hotmail.com.

Cedie had a great day. I was concerned last night but evidently a good night's sleep is exactly what she needed. She was up around 7am and was very happy. She took a 3 hour nap :-() and was ready to play this afternoon. I tried to take her for a walk when the sun went down but she was too tired and we didn't make it far before she began to fuss. She was much happier after I got her ready for bed and played her some music. I think she is still trying to adjust to life outside of the hospital with all the stimulation.

Right now she is snoring sweetly in her bed. Her new nurse (started tonight) just came in and asked was that little mousey noise really come from her :-) We said "that's our girl!" I am still in awe that I can finally hear that sweet noise any time throughout the night because she is here with us. God is Good.

May Pictures

Sunday, 6/4/06

We took it easy today. The 4 of us (+ our nurse) just relaxed alot. We did have a few visitors but it was a pretty calm day. This morning, Dylan decided that he could not take a bath until Cedie was taking one because they "HAD to do it together". Later, I asked him to go to the store with me and he said he could not because it would make Cedie sad. He is such a sweet brother.

Cedie was a little fussy tonight. She wanted to be put in her bed and left alone. Hopefully a good nights sleep will do her good.

Saturday- 6/3- 1st T-Ball Game

Today Cedie made an appearance at her brother's T-Ball game. Dylan has handled Cedie being at home pretty well and we really wanted to support him today. It was an 8am game but it still got hot quick! She enjoyed the experience though. She only fussed when the sun got in her eyes. It really meant alot to Dylan.

Tonight we had guests over for dinner. Cedie slept through most of it though :-) Its tough work being so popular!

We have not had any problems thus far and we are praying hard that things continue to go smoothly.

6/2/06-First Pediatrician Visit

Today Cedie got to meet her pediatrician for the first time. We had an appt the first time she was discharged but we were re-admitted the night before her appt. It was quite a task to get her and her stuff ready to go and into the car! It took some arranging but Cedie, her nurse, and I all finally made it in the car and went on our way. I thought I had a big enough car until I piled all of her equipment into it!

The doctor was really nice. Cedie semed to like her as well. She examined Cedie from head to toes. She said Cedie looked really good and healthy. We will be seeing her every two weeks until things stable out and we all get comfortable. She seemed genuinely interested in being an active part of Cedie's care.

Cedie fell asleep on the way home. When she woke up, one of her favorite nurses from TCU came to visit her. We enjoyed the company.

We have been working on bottle feeding and baby foods since we've been home. She is not doing so great on the bottle (she's still getting used to people being around when we are doing a bottle attempt). However, I think she is making progress with the baby food. We tried cereal tonight. It was an interesting expierience :-)

Thursday, 6/1/06- 1st full day home

I went to bed at 5:30am this morning and got to sleep until 8:30 because I had both the nursing agency director and the resp. therapist coming over at 9. The reason I was up for 24 hours was because my night shift nurse was crazy and unskilled. Its a long story. She was so high strung that she had me scared. Lets just say that when you are teaching your nurse how to suction at 12:30 am, it is not a good thing. Luckily the nurse that came home with us came back around 5. The night nurse doesn't work for the agency anymore.

Needless to say, we took it easy today. I held Cedie for a big part of the day (had to make up for lost time :-) ) Dylan was a very helpful big brother. We had several visitors as well.

Cedie seemed very happy all day. I took her outside late in the afternoon and she loved that. She loved it so much that she cried when I had to take her back in.

The new night nurse came around 7. We instantly clicked with her and she actually new what she was doing so I crashed around 8:30. She said Cedie did great all night.