Tune In

Don't forget to tune in tomorrow at 10 AM to 96.1 The River for the Our Lady of the Lake Children's Hospital radiothon. We will be interviewed live at 10 to share our story about our most recent hospital stay. You can listen online at http://www.961theriver.com/main.html or on your iphone through Iheart radio app.
Addison has started the bacterial antibiotic liquid Flagyl to kill any bacteria overgrowth she may have from food being stuck in her duodenum. Dr. Alberty said it wouldn't cause diarrhea like most antibiotics but guess what, it did. She has been doing better with her nightmares. I wish I could record her after she has one. It is so weird, her voice changes and all. It is just like we are in the hospital all over again. She hasn't been talking about the tube in her nose anymore but she still talks about the IVs and her belly boo boo. I wish she didn't have to go through so much. It is like she can't forget about it because now we have another test for her to take and she had 3 doctors appointments this month.
For March we have a upper GI series with small bowel xray, surgeon follow up, another GI follow up, and we get to pick up her inserts for her shoes. It is not only a copay expense going to the doctor appointments, the gas adds up driving to Baton Rouge at least once a week and I am not looking forward to paying for the inserts either, $737 cash, they do not accept credit cards. I was telling someone about how our insurance, Blue Cross Blue Shield of Louisiana, does not cover her orthotics or the inserts and they asked me what are you going to do? My response, whatever it takes. She has to have them and she is my daughter and I know God will provide for us. I was able to pay off another bill today, Addison's neurologist, Dr. Holliman. She was seeing her every 6 months but was discharged a year early at her last appointment in October. It was just under $70. I have been using t shirt money, donations and our income tax refund to pay off as many smaller bills as I can so we can pay more on the big ones. We have started a raffle too. The tickets came in today. Please contact me if you are interested in donating or selling tickets, southerngal05@cableone.net. As always thank you for your continued prayers and support.

Even more testing

We saw Addison's pediatric GI, Dr. Alberty, today. He doesn't know why Addison is still vomiting so much so he ordered another test for this week. He also prescribed Flagyl. He aspirated her duodenum and the pathology report came back fine but he said she may have bacteria overgrowth on the outside from the food being stuck so long. She will take it 3 times a day for 10 days. I had to go to a compounding pharmacy to have the liquid Flagyl made for her. If we do not notice any changes she will start Reglan. If the test she has done this week doesn't show us anything she will have to have a motility test as well. If we still don't know what is going on we will have to start checking for allergies. He said normally he doesn't like his patients to be on Reglan longer than 2-3 months but patients with a cronic stricture like Addison will have to be on it longer. But she definetly still has something going on causing her to vomit. We will follow up with him again in 1 month. He said normally he is the one doing all the testing but in Addison's case we have to do the testing (medication trials) and tell him the results. I do feel confident he knows what he is doing and I trust him. He spent over 20 minutes explaining everything to us. I have been keeping track of what she vomits and when she does but now I have to also keep track of what she is eating. She was already supossed to have another swallow test next week ordered by the surgeon to check to see if the part of her duodenum that was enlarged is still enlarged and he said he will get her testing done this week. He said he is certain it will still be enlarged so this test will be different. It will time how long it takes the fluid to go down. Hopefully we will figure this out soon.
We will be interviewed live on Thursday at 10 at a radio station in Baton Rouge called 96.1 The River to share Addison's story about her most recent stay at Our Lady of the Lake Children's Hospital. It is for a radiothon to raise money since it is a community funded hospital. I am so nervous. I have been so emotional lately I am so scared I will start crying on air.
On a happier note, I paid off the surgery center she had her tonsils and adenoids removed and PET tubes placed in her ears and the one in Ocean Springs she had her first EGD done at. I also paid off the anesthieologist, radiologist, Dr. Alberty's bill from the EGD, and Dr. McNair. I owe the surgeon over $1,000 but I was able to make a $125 payment all this week. Thank you to everyone who ordered t shirts. I am hoping we have a huge success at the upcoming yard sale and dance to pay for her orthotics that our insurance does not cover.

To medicate or not to medicate

Addison went to daycare Wednesday, Thursday and Friday morning. When Tre' picked her up on Friday she had just vomitted. Her teacher said she ate some yellow watermelon and she gave her seconds and then she vomited. As soon as she came home she vomited 2 more times. We bathed her and she asked for a popscicle so I gave her one while she was playing in the bath tub. She ate 1/2 of it and before we could get her dressed she threw up again. She then asked for juice so we gave her 3 sips and it came right back out too. She was crying for mashed potatoes and chocolate milk but we were scared to give her anything. She finally cried herself to sleep and took an hour nap. She ended up vomiting 5 times in 2 hours. After her nap she was feeling a lot better and running around being silly. I called her GI, Dr. Alberty he said if she started vomiting again to bring her straight to the emergency room and to start her on the Reglan. She has an appointment with him Monday afternoon and I want to discuss with him the side effects before I start her on the Reglan. It seems she may need it because she is still vomiting so much but the side effects are horrible and who wants to put their 2 year old on something like that?
 Me and Tre' just feel so helpless and the constant worrying is so stressfull. I was feeling better the last few days. I went to Jazzercise 3 days in a row, I got my hair done, I made homemade cleaning products to save money, I planned out our dinners for the entire week and went grocery shopping. This may seem like normal things to most of you but when you are depressed you just don't have the energy to do anything so it was like running a marathon for me, especially getting all that done in 3 days.
We are still accepting donations for the upcoming yardsale on March 24 for Addison and Evan. We will need fold out tables, grocery store bags and volunteers to help with setting up, taking down and during the day. The southernbelle tshirts came in too and they are so cute. It took me 2 days to sort through all the orders.

School Days

Things have been going better. Addison hasn't vomitted in almost a week. She will tell us she needs to but she hasn't. I wonder if it is just the reflux aggervating her and that is why she thinks she needs to. She does get the hiccups a lot. I weighed her at home and she has gained her weight back and is between 28 1/2 - 29 pounds. Her belly is still swollen and she has been wearing bigger sized clothes. It seems so weird to me to dress her in a 3T. She has always been at least 3 months behind in her clothes size. She was wearing size 24 months before the surgery. Her size 2T dresses still fit but the pants are to tight on her belly. Thankfully Target has cute kids clothes for $5 a piece. Her nightmares are getting better. She has always woke up during the night but usually drinks something and then goes right back to sleep. You can tell when she has a nightmare because she crys and it has a different sound. No matter what we try we cannot calm her down. She doesn't know what she wants. First it is milk, then we get it for her and she wants apple juice, then she wants a baby blanket, then she wants to rock in the recliner, it goes on and on. She also has started asking for a pacifier which is just silly. She very rarely took a pacifier when she was a baby and she got really sick when she was 9 months old and hasn't had a pacifier since. But she gets so upset we will give it to her if that is what it takes to calm her down.
She started daycare yesterday. Her teacher said she didn't cry the whole time but acted sad the whole time. She goes from 7-12 in the mornings and then comes home to eat lunch and take her nap. Which works out perfect since she can't lay flat on the mat like other kids do for their naps at daycare. I get anxiety when I think about her catching a stomach virus or getting sick from the other kids but she really needs some interaction so she can learn to share and play with other kids.
I enjoyed my morning "off" yesterday. Although it was not a break at all, I worked the whole time. But at least I can listen to the TV while I work and catch up with all the news.
We took Addison to the Baton Rouge Zoo on Tuesday. It is a small zoo and usually takes around 2 hours to see the whole thing but she loves it. The animals must have liked the weather because they were so socialable. The bigger elephant was reaching his trunk across letting people touch it. A giraffe was as close as he could get and and Addison was reaching out her hand with a leaf trying to feed him. Our favorite bird talked to us too. I always shake Addison's snack bag and the bird will follow me and usually dances. He will bounce his head up and down and say "hello" and then reach his hand out for a bite. I never feed him but Addison loves it.
My mom's friends from Biloxi High, the same ones that had the super bowl party, are orgainizing a dance for Addison. It will be on April 28 from 8 pm-12 am. Admission is $10 a person or $15 a couple. You can bring your own drinks. There will be a DJ and Karaoke so come shake it for Addison! We will also have the raffle drawings there too. We are still taking donations for the yard sale benefiting Addison and Evan. You can read Evan's story at http://allaboutevan.com/ On October 19, 2010, two year old Evan Heidingsfelder was is diagnosed with ALL (Acute Lyphoblastic Leukemia). He is still fighting and will receive chemo until 2014. We will take anything, so please contact me at southerngal05@cableone.net if you have donations. As always thanks you for your prayers and continued support.

Here we go again?

Addison vomitted again last night. That was the second time in 3 days. I hope things are not going back to the way they were. She doesn't follow up with her GI until the 27th. I am keeping a journal of the days, time, and what she is vomitting for him to look at. I hope she doesn't have to start taking the Reglan he prescribed. She was drinking her milk last night and just stopped and said I need to puke in the sink. She did wait until we could grab a towel but as soon as we placed it over her, it started coming out. I am so confused. I don't know if I should worry about her stomach from the surgery, if she just has "slow stomach" and the food is taking awhile to get digested, or if she is just so used to vomitting she is making herself. I really don't think she is making herself, who would want to do that? She is still swollen and I even had to get her some bigger clothes to wear and larger sized diapers. I weighed her yesterday at work and with all her clothes and shoes she weighed 30 pounds. I was all excited and then realized she had a very wet diaper. But I think she has gained all of her weight back. Please continue to pray for her recovery and that we can get some answers to why this is still happening.

Day By Day

Sorry it has been so long since the last post. Addison is doing better. She has started asking to go to school and play with the kids. Last summer she went to daycare for 15 hours a week but she only lasted about 6 weeks. She would cry and throw up and well I just couldn't take it! She would come home in a different outfit from vomiting and I felt like we were paying and she wasn't even there. Since she keeps asking we have decided to try it again. She will just go from 7-12 and it is across the street from where Tre' works so he will drop her off and bring her home on his lunch break. I am not going to lie, I need some mommy time. I still have gift cards from my birthday last May that I haven't been able to use. I need to start taking care of myself again. She starts back next Wednesday.
I was feeding her grits yesterday for breakfast and she all of the sudden said I am going to puke and she did. It wasn't a huge amount of vomit but I still don't know why it happened. I feel so sorry for her because she just acts like nothing has happened when she does it. I know my stomach gets sore and it hurts so hers has to feel the same. That was her third time to vomit since surgery 3 1/2 weeks ago.
She is talking about the tubes and cutting her belly less and less each day. Today we went to get the oil changed in Tre's truck and she got scared. She was saying things like: They not going to check me, its not going to hurt, no more ouchies mommy. And she didn't even leave her car seat, she was just scared because we were some where different. She is still waking up during the night. But that has always been her routine. She isn't crying as bad and goes back to sleep faster. Her schedule is still messed up. She was awake until midnight last night and 11 the night before. Poor Tre! I have to work so he has to stay up with her and then get up during the night and be up at 6:30 for work. I am hoping daycare will wear her out and get her back to a normal sleeping pattern. Fingers crossed! She is still waking up during her naps too. It is the weirdest thing, it is like she doesn't know what she wants. She will ask for apple juice and then we give it to her and she screams she doesn't like apple juice and she wants chocolate milk. She is still not eatting a whole lot or even a lot. I have tried cutting her food into shapes, fixing her favorites, like corn on the cob she would normally eat two ears and now she only takes 1-2 bites and she is done. I needed to do some dishes and she wanted me to play with her. I handed her the barbies and said you play and I will be doing the dishes and she responded with "Play with me, chill mommy. Yes mam! Any excuse to put off the dishes for a few minutes.
As for me, I am feeling a little bit better too. I was upset because I expected people to react the way I would if the shoe was on the other foot. I just don't understand how they can't even ask how Addison is doing. And it isn't just friends, it is family too. I know for a fact they know what is going on. I read a quote a few days ago about God putting people in our lives for a reason or a season. I guess the people I was hurt by are just meant to be "seasonal" friends. I have heard from lots of friends from high shcool that I have not seen in over 12 years (yes I am getting that old!). They have even bought shirts and sold them to their co workers. My mother in law had her hair cut today and the beautician didn't charge her, and told her to put it towards Addison's orthotics. She doesn't even know us! I even had an exboyfriend doante but peole I see everyday don't even comment on her. I am moving on, I am not letting others bring me down anymore. I would love to say what goes around comes around but knowing me I would be there to help them anyways. I guess I inherited the nice trait from my mom. Those of you that know her know exactly what I mean.
I just deposited almost $600 from my mom's classmates from Biloxi High School. They had a superbowl party and raised money for Addie. Now I can pay off the surgery center that is always so rude to me. I have started receiving notices from our insurance company but no bills yet. I know, they are on their way! Addison of course met her $750 deductible and her $3000 out of pocket while she was in the hospital. My goal is to mainly pay off the doctors, pay for her inserts and orthotics and just owe the recent hospital and the one she was born and spent 5 weeks in the NICU. Of course I would love to pay them off too, but as long as we can shrink the amout we are sending out monthly that is a huge help.
We have set the date of March 24th for the yard sale to benefit Addison and Evan. Please contact me if you have anything to donate. My email is southerngal05@cableone.net. I am also placing another order for the tshirts on Friday if you missed out on the last order. I can't wait to get them in and start seeing purple every where. Addison also has a team walking for the March of Dimes in Diberville on April 28th. You can join her team or make a donation to the March of Dimes at my website http://www.marchforbabies.org/JrgautreauAs always thank you for your continued support and prayers.

Magic shoes

Addison saw Dr. Frierson this morning for her feet. Since we have been home from the hospital she has been walking on her tippy toes. He said it is probably from her laying in the bed for so long without walking, her feet just got stiff. So she has to wear some different inserts for 6 months before she can get the orthotics. She will follow up with him again in six months. He also showed me some stretches to do on her feet 4-5 times a day. We went straight over to the prostetics place to get her fitted. She had to have both feet placed in cast to get their shape. She was terrified and cried the whole time. They had to place this tube between her feet and the cast and it looked like the rubberband they use to tie your arm or leg before you have blood taken or get an IV. She was screaming no more IVs. I just kept reassuring her it wasn't going to hurt and it wasn't an IV but nothing I said or did was working. She was crying for Tre' to come get her. She must think I am the mean one because I am the one always bringing her to all these appointments. After the cast were made they had to be sawed off and the noise scared her even more. Then we get the news our insurance, Blue Cross Blue Shield of Louisiana does not cover the inserts or the orthotics she will get in another six months. Can you believe that? Not even on a 2 year old! The inserts are $737 and who knows what the actual orthotics will cost. And they only accept cash or checks made out to cash, no credit cards. It just makes me sick. You can even see on the video of her first steps her feet are already messed up so how can they not cover them? They will take 5-6 weeks to be made. She was so wore out from crying she fell asleep after only 2 minutes of the car ride home. I stopped and got her some Raising Canes chicken fingers but all she ate was half of the coleslaw. She kept saying it was her salad. How she could resist their awesome chicken fingers I have no idea. She did eat almost all of her Gerber toddler meal for dinner though. At this point I will take what I can get when it comes to her eating. I have even tried cutting food into fun shapes but that doesn't even work. She is getting her energy back a little more each day. She plays for a while and then has to lay down for around an hour watching Barney, Poppy Cat, or Peppa Pig before she is ready to play some more. As always thank you for your continued prayers and support.

Just a few peoms I have come across that are sure to bring a tear to your eye

Did you ever wonder how the mothers of premature babies are chosen?
Somehow, I visualize God hovering over Earth, selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to take notes in a giant ledger. "Beth Armstrong, son. Patron Saint, Matthew. Marjorie Forrest, daughter. Patron Saint, Celia. Carrie Rutledge, twins. Patron Saint... give her Gerard. He's used to profanity."
Finally, he passes a name to an angel and smiles. "Give her a preemie."
The angel is curious. "Why this one, God? She's so happy."
"Exactly," smiles God. "Could I give a premature baby a mother who knows no laughter? That would be cruel."
"But does she have the patience?" asks the angel.
"I don't want her to have too much patience, or she'll drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it. I watched her today. She has that sense of self and independence so rare and so necessary in a mother. You see, the child I'm going to give her has a world of its own. She has to make it live in her world, and that's not going to be easy."
"But Lord, I don't think she even believes in you."
God smiles. "No matter, I can fix that. This one is perfect. She has just the right amount of selfishness."
The angel gasps, "Selfishness?! Is that a virtue?"
God nods. "If she can't separate herself from the child occasionally, she will never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn't know it yet, but she is to be envied. She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'mama' for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see – ignorance, cruelty, prejudice – and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."
"And what about her Patron Saint?" asks the angel, his pen poised in the air.
God smiles. "A mirror will suffice."

Heavenly father full of grace
A ray of sunshine upon her face.
On this night there's one thing I pray
You gave her life so please don't take it Away.
You sent her an angel to stand by her side
Thur heal pricks for gases, not a tear did she cry.
All ten fingers and all ten toes,
Barely as big as a giant rose.
From one pound to three pounds
Your on your way home,
My precious little girl, oh how you've grown.
On this night there's one last thing to say
Thank You God for letting her stay.
Now I lay me down to sleep,
I pray for this preemie God gave me to keep.
So very little, So very small,
I pray you make it through it all.
Each day I hold you skin to skin,
I hope you feel my love within.
You are so brave, you are so strong,
You came early because you belong.
Angels watch over her all through the night,
God keep her safe and help her fight.....
She has learned so much about life,
To be the greatest mother, friend & wife.
She never complains about the little things,
She appreciates what tomorrow brings.
She's been through the gates of hell
And still stands tall,
She has laughed, cried, prayed & rejoiced,
She'd been through it all.
Her children mean the world to her,
She will walk any mile
Just to see their precious face,
Just to see them smile.
She's got invisible wings on her back
That God has put in place,
She wears a purple heart for the bravery
She has faced.
She is admired by many, blessed by God above.
There is nothing more powerful
Than a Preemie Mother's Love.

You know you're the parent of a preemie when...
1.You use strange initials (C-PAP, CCs, NICU, NG) when discussing your child.
2.You actually remember how many CCs make up an ounce.
3.You count his weight in grams.
4. The skin on your hands is peeling from washing so often!
5.You hesitate when someone asks his/her age, but you know exactly how much he/she weighs!
6. The answer to "How old is your baby?" is a story 30 minutes long!
7. When someone asks his birthday, you reply, "Which one?"
8. You start to understand some of the things they say on ER!
9. You turn into Kung-Fu Mom when someone tries to touch your baby.
10. You attempt to measure just how much spit-up he/she just had before you clean it up!
11. You know how much he weighs before putting him on the scale at the doctor's office
12. You cry at Maternity Ward and get mad at Baby Story.
13. You see a 7lb newborn and say "Wow! She's so BIG!"
14. Your baby is months old before he can even go to the mall.
15. You have never explained why your baby is on an apnea monitor.
16. When someone says how tiny your baby is, you argue that he is huge -- and to demonstrate, you whip out pictures of him in NICU.
17. You do a health check on people when they come to your house to visit.
18. You make people wash their hands before going near your child.
19. You want to scream when someone says that she just wants to have this baby now - at week 28, 32, or 34.
20. You are so amazed when someone actually tells you your baby is big for his age!
21. You tried to find a place to buy newborn size diapers in bulk.
22. You called half your relatives when the baby grew out of their first pair of pajamas!
23. You never take your child for granted.
24. You worry about RSV season and it is still weeks away . . .
25. You know what "RSV" stands for.
26. You donate his/her tiny clothes to the NICU and marvel that they seem so small - when they were too darn large!
27. Your son gets a simple cold and her doc sees her within the hour!
28. People say, "He CAN'T be __ old...he's too little!"
29. It has taken them 5 months to grow INTO newborn clothes!
30. You pick up 2 pounds of ground beef and think that your baby was born at the same weight
31. You buy "Purell" in bulk
32. You know about oxygen tanks and regulators more than the company supplying it to the airplanes
33. You can stare at your baby for hours when he sleeps

The Preemie songs http://youtu.be/CLz9k_NFFq4     http://www.youtube.com/watch?v=VIuK1gz24NA&feature=related

How about a little flash mob  http://www.youtube.com/watch?v=JBIOzyOT1gI

Once again one step forward and 2 steps back

Addison has been drooling since Saturday and her nose started running last night. She threw up during the night but it was not food, just her chocolate milk. I made her an appointment with her pediatrician this morning to go ahead and have her checked since we were at Chik Fila on Saturday and you know she gets sick everytime we are around other kids. I gave her a bath and she pooped in the bath tub. I was cleaning the mess and she pooped again. This time on the carpet in my office. And then she decided to pee on the carpet in our bedroom too. I am already rushing to make it to her 9:15 appointment in Baton Rouge and I get to my car and remember she poured out her cheese its on the drive home from Mississippi last Sunday in her car seat. Great! I clean the mess and get ready to go. Then I notice my car is on empty. So you can imagine my anxiety is full blown by all of this. I stop and get gas and she is already fussing about the ride. I am so used to driving to the hospital and her cardiologist, Gi, and surgeon are all in the building next to the hospital so I turned in there. Oops! I had to turn around and go down further to her pediatrician's office, all with 2 minutes until her appointment time. Its like nothing can be easy for us. Anyways we finally made it. I talked with the her about Addie's nightmares and she said we are doing right to just keep reassuring her it is over and she is getting better. She said if they get to bad we can take her to counciling. Addison woke up from her nap yesterday and the first thing she said was "I have a rash and it is chicken pox. I need to go to the hospital." She remembers everything. That happened over a month ago, and it turned out not to be chicken pox. We really have to watch what we say infront of her because she is so smart. I told her about Addie chewing and spitting out her food. She said she may had a food aversion and need therapy to teach her to eat. She said probably from her being used to hurting and she might have food texture issues. Dr. Alberty, her GI, had mentioned to us adults with strictures usually don't eat meat because it takes longer to digest. Addie's pediatrican is married to a GI and asked the same thing, if Addie had been put on a special diet. But so far she hasn't. We are trying to eat healthier. I bought some tofu and some ground beef substitute called veggie crumble last week. The veggie crumble was actually pretty good. We cut her food up in small, pencil eraser sized, bites but still the spits it out. And it is not just meat, sometimes crackers or mac n cheese. Dr. Guidroz said we will give her some more time to heal and if she is still doing it she will have to start therapy. She didn't prescribe antibiotics for her cold, we are going to try over the counter medicine first. I am glad I took her in though because she has had strep throat 3 times and I just wanted to make sure that wasn't what is causing her drooling. She normally vomits when she has sinus drainage too so we are sure that is what caused her to vomit last night. But on the brighter side it had been 11 days since she last vomitted.
She was being so cute last night playing doctor with me and Tre. I was working and she was saying things to Tre' like: It's not going to burn you, It will just be for a second, I am going to make you all better, I wanna take a picture of your bandaid, It's okay Addie is here, I am a doctor, It's all better, your boo boo is going to go away. She was putting guaze and bandaids all over us. She even kissed Tre's leg to make it all better.
I paid off 5 doctors yesterday, it was over $560, 3 anesthesiologist (1 from her EGD in November, 1 from her tonsils being removed in November, and already had a $190 bill for her surgery on 1/19/12, (they sure didn't waste time on billing!), Dr. McNair (GI in Ocean Springs that found the stricture first) and Dr. Scallan her ENT. Since she just saw Dr. Alberty last Monday, Dr. Guidroz today and Dr. Frierson (orthopedic) on Thrusday, that is already $120 in copays for this month and today is only the 7th! I hope she starts to forget soon and the nightmares go away. I just want to focus on getting her belly and her feet fixed before we have to start thinking about counciling and therapy.

Recognizing Blessings

This post will be a little bit different. I have been debating on sharing some things because of what it may look like but I want peole to know what really goes on when you have a preemie or a sick child so here goes. During the summer I had a dream of my Uncle James. He is my mom's only brother and passed away August 2003. I walked into my mom's house and he was sitting on the floor in her living room with his legs crossed indian style. I said "Hey, what are you doing here? to him and he didn't respond. I leaned down to hug him and I said "I have missed you." He started crying and I asked "What is wrong?" and he covered his face and started crying harder. I asked him "Is Addison okay?" He shock his head no and I asked "What is wrong with her?" He answered "She has a blockage." I woke up after that. I told a few people about my dream but I was embarassed to tell her doctors becuase I thought they would look at me like I was crazy. About 2 months later my father in law found out he had 2 heart blockages and had to have stents put in. My husband thought maybe that is what my uncle was trying to tell us. Of course now we know he was talking about Addison. The weekend Addison came home from her surgery I was working in the living room and mom was reading a book about Jesus to Addison in our bedroom. I heard mom tell Addison she has a brother named James like Jesus does and Addison responded "I know, I met him." Mom asked what they talked about and Addison said "He just wants me to feel better." Surely this proves my Uncle James is Addison's guardian angel. How lucky are we to know for a fact Addison has someone watching over her. I just wish I would have spoke up to the doctors sooner, I will now for sure.
When I had Addison my OB told me he really has to watch his preemie moms because it is very common for them to have postpartum depression and post tramatic stress disorder from the NICU expierence. Lucky me I developed both. I know this sounds gross and you really don't understand until you have felt depression but when she was a baby I would go days without washing my hair or even remembering to brush my teeth. I just physically didn't have the strength to take care of myself. I still have anxiety attacks just taking her to Walmart and hearing someone cough. My heart races and I have to leave almost immediatly and then I stress about her getting sick. Everytime we go to a birthday party or holiday gathering she gets sick. I don't want her to miss out on these experiences so I still bring her. Even taking her to McDonalds to play I get anxious and I am constantly thinking about things like, I wonder when was the last time this equipment was cleaned, oh goodness that kid has dirty hands, etc.  I know it probably seems like I am over protective but trust me I wish I didn't feel like this. People think because she is 2 now, she is not a preemie no more and I shouldn't worry. It is not just worrying about Addison, I get stressed out when I feel over whelmed. Poor Tre', he has learned to deal with it by now. The smallest upset can lead me to days of feeling so depressed I won't even get out of my pajamas. I get jealous of people who get to get dressed everyday and go into work. I love staying home with Addison but she is with me 24/7. I know this may sound horrible and I am so very blessed to be able to work from home to take care of her. But when you go into work, you have adult interaction, you know you are getting your work done, you have days off, when you get off you don't have to think about work anymore, etc. I have to work every free second I get, including weekends and holidays. There is absolutely no way I could keep any other job the way Addison has doctor appointments all the time. I would have to take off work at least once a week. I have been having a bad episode for the last couple of weeks since her surgery. Even feeling like I am just ready to give up, until yesterday when I read about this baby. I am a part of a group of preemie moms on facebook. One of the moms posted about her friend that just had a baby boy named Ryder. He was born fullterm at over 37 weeks. He had heart defects, a cleft lip and his intestines were on his outside. He had surgery to correct his intestines at 1 day old and surgery was scheduled to correct his cleft lip the next day. His surgery should have only taken 2 hours but lasted 8 hours. His body had a reaction to the medication given during his surgery and his fever spiked at 107. He passed away at 3 days old. My heart is broken nmfor his family but after I heard the news the first thought that crossed my mind was he is lucky. He is not suffering anymore and he is in Heaven. I hate to say that but look at Addison. All she has known is suffering. Then my next thought was I feel guilty for feeling sorry for myself. I am blessed to even be able to get pregnant, have a live baby, and even a child that has survived so much. I wish I could turn off these sad feelings but it is beyond my control. Before dealing with depression I didn't understand how people could let it control their life, but now I know what they go though and it stinks!!! I started taking Zoloft and Tre' said he could tell a difference but since we canceled my insurance I have not had it filled. I was trying to see how I would do without it, but I realized I really need it. I am going to see if I can get some samples first, fingers crossed. But if not I will have to switch to the cheapest medication I can find and I already feel guilty about spending money on me. But enough about me and onto Addison.
Addison is eating a little bit better. I just fixed her some red beans for lunch and she lifted the bowl up like it was cereal to drink the juice. She only woke up 3 times last night and she went back to sleep faster than she has been. She is still talking about the hospital and what happened to her. We just keep reassuring her she is getting better and her belly boo boo will go away. We were at Walmart the other day and the pharmacist was reaching by her to grab a pack of gum and Addison froze and just stared at her. Her white coat scared her. I made a comment she had just got out of the hospital and the pharmacist told Addison she wasn't going to do anything to her and smiled at her. Addison is scared really easy now, and whines for us to hold her, seems like constantly when we are not home. After her nap today we plan on making valentines with her cousin Colin.
Thank you everyone for your donations. Not just money but stuff for the yard sales and buying shirts. I am going to send thank you cards out. I have a little surprise being made to send with them to show our gratitude. It will take at least 2 weeks, but they are coming. Oaky I have been on here long enough, the boss is fussing at me. As always thanks for your continued support and prayers

Still trying to get caught up from the hospital stay

Addison is still having nightmares and everytime she coughs she says she is going to puke. She doesn't cough a lot just sometimes when she drinks fast she will get choked and she is so used to vomiting she asusmes she is about to. She is still not eating that much, still chewing and spitting out. She slept around 9 hours last night and woke up 5 times. Boy could I use some energy these days! I took her to meet a friend and her little girl today to have lunch and play at Chik Fila but she was scared to play. She just sat and watched again like she did at Chucky Cheese. She did go down the slide once but I had to go down with her on my lap. She still hasn't asked for any tylenol so she must not be feeling as sore as she was. She is still talking about her IV, doctor's cutting her belly, and the NG tube. Also when you ask her what she is going to do when she grows up she says she is a doctor and a nurse. Thank you to everyone that ordered shirts. I placed the first order Friday and I am still taking orders and will place another order hopefully this week too. I cannot explain how good it feels to actually be able to pay off doctors. I sent 3 checks to doctor's paying them in full yesterday. Each balance was under $100 but we are losing 3 bills that we have been paying each month so now we can pay more on the others. I plan to pay off the Surgical Specialty Center next, I still owe over $800. They are such rude people. I have been paying at least $25 a month since April and they called to inform me they will no longer accept payment plans under $50 a month. Since Addison has had surgery there twice that means I have to pay at least $100 a month ($50 on each account). When I told the collector our situation and stated I have never missed a month paying and all I could send was $25 to split it on both accounts she told me my payment would not be accepted. I don't understand how they can treat people like that. At least I am paying something!!! So I decided when I get the money for the shirts, we should make close to $800, I will send them their payment in full with copies of all of our medical bills and a "kill them with kindness" letter thanking them for their services and basically saying I hope we never have to use them again. I just hope Addison's orthotics will be covered since I am sure we had to have met our out of pocket for the year from the hospital stay. Also thank you everyone for your donations made on this blog. I do have to share a small percentage with paypal but every donation helps out tremendously. We have already started receiving donations for the upcoming yard sales too. I love yard sales! Please let me know if you have anything to donate and I will come pick it up. Addison also has a team walking in the March for Babies for the March of Dimes in Diberville, MS on April 28, 2012. If you would like to join our team or donate you can visit http://www.marchforbabies.org/Jrgautreau
Thank you again for all your continuous support and prayers. I promise to try to post more, I am extremely busy with work and Addison is such a mommies girl it is hard for me to get anything done. I am actually heading out to my office now and it is 10:40 PM. I wish I was a coffee drinker when I pull all nighters!

To tired to think of a title

Addison is feeling better. She didn't ask for tylenol at all today. She did have an episode where she asked for a towel but she didn't throw up. So she has made it a full week without vomiting. If we could just get her to sleep better. The first thing she said this morning was "Where is my IV?" She checked both hands and then removed the blanket and checked both feet. She then said "They cut my belly." But she didn't mention the NG tube at all. I hope things start to get better for her. I just can't imagine what other children with more severe medical problems go through. My heart breaks for them and their families. Sometimes I am very angry Tre' and I will never know "normal" parenting. We don't know what it is like to put Addison to sleep in her room and just walk out or even to sleep through the night. I get jealous when I see other families going on vacations and trips and we are worried about paying for medications and doctor and hospital bills. I know we are very blessed to be parents in the first place and I shouldn't get jealous. I also know we have it easy compared to some other parents. But sometimes I can't help but wonder will things ever get better. I just worry myself sick about her having surgery again. I know there is nothing I can do to prevent it but if it is this hard on her now I can't imagine when she is a little older. I think about her getting picked on about her scars and her feet. Her going to parties and not being able to eat certain foods because of the reflux and having to explain herself. I know she will be a very special person because of everything she has been through. She will most definetly be knid hearted and not judgemental. She has made me a better person and I have a whole new outlook on life. I would love to give her a sibling, she asks all the time for one. To actually experence a normal pregnancy and delivery. But we are to scared this will happen to us again and neither of us are strong enough for that. Not to mention the guilt we would have putting another baby through it. My OB says it is a very slim chance it would happen again. The only reason she was born premature was because of her stomach birth defects. No one in either of our families have ever had unhealthy babies but we can't trust that because it still happened to us. Maybe it happened to us because it is God's purpose for me to share her story and make other people aware.

Nightmares

It seems as if Addison is having nightmares. She has always woke up 2-3 times during the night and wants something to drink and goes back to sleep. But now she is waking up 3-4 times and is crying. She doesn't even sleep through her naps. She slept 1 hour and 20 minutes yesterday for her nap and woke up twice during that short time. When she woke up for good, she cried for 1 hour and a 1/2. I could not get her to calm down. It was like she was reliving her hospital stay. She was asking what happened to her IV, saying things like they cut my belly, and asking about the tube in her nose. I just kept telling her it was over and she was better now and we are home not in the hospital but everything I tried seemed to aggervate her worse. I tried getting her to play a game with me, she cried harder when she couldn't decide which game she wanted to play. Same thing when I tried to read her a book, she couldn't decide which book she wanted. Tonight she has already woke up 3 times in 4 hours. Her nose starts running from crying and then she is upset about that. I wipe her nose and she wants medicine on it. I put some Aquaphor on it and then she is screaming for a bandaid. I just can't get her comfortable. I am exhausted. I have to work at night and by the time I get her to sleep (she just wants mommy because she likes to play with my hair) and get to work she is waking up. I wanted to go to Jazzercise yesterday but she was so upset from her nap I couldn't go. I planned to get up at 4:30 am and go this morning and now it is 2 am and I am still working so it doesn't look like I will be getting to go. She consumes every minute of my life. Me and Tre' did get to go to dinner for the first time in 7 months tonight without her. It was nice to get away for a few hours but how can we really enjoy ourselves when we are constantly worrying. We don't know if she is in pain or just having anxiety. She is probably still sore from surgery but I don't want to keep giving her the Tylenol with Codiene so I have just been giving her regular Tylenol twice a day. The codiene can make her have nausea. We don't know if she is in pain from surgery or reflux. She starts gagging when she is crying hard and I know that has to hurt her belly too. I can't wait until she is older and able to communicate better with us. Don't get me wrong, she is quite the talker but it is like she is scared to tell us what is hurting because she doesn't know what we will do to her. I hope and pray she starts getting some sleep and forgets about what has happened these last few weeks. I don't know how she will forget because she keeps bringing things up several times a day but hopefully she will be reminded less and less in the next couple of weeks.
 I am placing an order with Southern Belle for some T-shirts to raise money for her medical bills. The shirts will be purple for the national color of prematurity awareness and will say "Real Southern Belles know Blessings come in small packages." They are available in short sleeve sizes youth XS- adult XXXL and in long sleeves youth sizes XS- adult XXL. Short sleeves are $20 and long sleeves are $22. Please let me know if you would like to order a shirt. My email address is southerngal05@cableone.net. We also have a raffle planned for mid April. If you would like to donate something or purchase some tickets please email me. We have a yard sale planned for March too. An old classmate of mine has a son with Luekemia and we will be splitting the yard sale proceeds with her. My mom and some of her classmates from Biloxi High School are also planning a dance and a band has even already offered to play for us. It amazes me the people I have never met that are reaching out to help us and yet some family members have not even called or wrote to offer help or check on Addison. You really find out who your true friends are in circumstances like these. It kind of makes me dislike people. I know that is horrible to say. I guess I just feel like I would bend over backwards for anyone in my family or any of my friends and to see the feeling is not mutual is very upsetting. Maybe because I have been through so much I would be more supportive to others but I can't imagine turning my back on a 2 year old that has been through more in her life than most people will go through in their entire lives. I pray God heals my broken heart and those people never experience an ounce of what me and Tre' have felt. As always thank you for your support and continuous prayers.