Do you ever catch up on sleep?

Sorry I have not updated on Addison in a few days. I am so overwhelmed with everything. I am still trying to catch up from our hospital stay. There are just not enough hours in a day. Between taking care of Addison, working, and keeping up with the daily house chores, I am exhausted. You don't even realize how much you miss not being home for so many days. The stacks of mail to go through, bills to pay, the never ending laundry piled up, etc. Addison is still not sleeping through the night. She has never been a good sleeper and we were hoping the surgery was going to be like magic and fix her completely but that has not been the case. She usually wakes up and whines for something to drink but lately she has been waking up crying. I have to tell her we are at home and everything is okay. Then she wants me to rock her or she may not even go back to sleep and stay up for a few hours. I think she might be having nightmares about the hospital stay. She wakes up 3-4 times each night.
Addison followed up with her pediatric gastroenterologist today, Dr. Alberty. She almost weighs 27 pounds so that put a smile on my face. His main concern is her stomach's motility. He said because she had her stricture for so long that it may take severel weeks for it to work properly or it may never work normally. The part of her stomach that was right before the stricture, (the part that had food stuck in it) he said may always be enlarged. When I asked if we have to worry about this happening again, I hated his answer. He said "absolutely." I am trying not to focus on the thought of her going through this surgery for a 3rd time. Everyone keeps saying she is so little she won't remember. But how do they know? Of course she doesn't remember her first surgery at 1 day old but she keeps talking about her hospital stay. She is playing hosptial with her baby dolls and stuffed animals. Taking their temperatures and listening to their hearts and bellys. Today she yelled out her favorite nurse's name (we will call her L) and when I asked her who is L, she answered me L needs to come check my belly, she needs to listen to it. It is obvious she is thinking about it. On our way home from Dr. Alberty's office she was asking to eat and told me to call the nurse for chicken, french fries, and ketchup. Dr. Alberty said he wants to see her again in 1 month. We are hoping things will only get better once the swelling has gone down. He said Addison will be on the Prevacid at least 2 more months and if she is better after that we can start to ween her off of it. While we were waiting there was an 11 month old baby girl with a feeding tube and her mommy was preparing her bottle and then poured it into the feeding syrindge. Addison couldn't take her eyes off of the baby. She was asking questions and then started talking about the 2 tubes she had. And I was explaining to her the baby has a tube in her belly too and it was helping her to grow big like Addison.
Addison is so used to seeing doctors I have never had a problem with her but lately she wants me to carry her and she has to sit on my lap the whole time instead of playing with the toys. And when I tell her we are going to see the doctor she gets scared. I hope she starts to feel comfortable again. This month she had 3 therapy sessions, 5 doctor appointments and a 9 day hospital stay. I am glad January is over! So far we only have her orthopedic appointment scheduled for next week and her GI follow up on the 27th of February. Hopefully it stays like that so we can get a break. Traffic is so bad in Baton Rouge her appointments take hours. We left our house at 12:30 today for her 1:45 appointment. It was after 3 when we left the doctor's office and then had to deal with traffic to get home. It took 3 1/2 hours and we didn't even have to stop at a pharmacy. But then again I am so thankful we live near a big city and have access to all these specialists.
Yesterday she woke up and said she needed to go potty, which she did on the big girl potty! We asked her what she wanted for her reward and she wanted to go to Chucky Cheese. We took her and normally she runs around and we have to chase her, but she just wanted to people watch this time. She did ride a few rides but we had to carry her, she was scared to get down and walk. She ate 1/2 a piece of pizza and some grapes. We took her to Target afterwards to buy big girl panties so we can get this potty training started again. We first started after her 2nd birthday but November was such a hard month for us we slacked off for a while. Wish us luck!

One step forward and two steps back

I woke up around 11:45 last night and asked mommy to hug me. I was feeling bad and then I told her to get a towel. But before she could get out of the bed I threw up. Mommy called the surgeon and the resident said for me to call and get an appointment in the morning. I couldn't go back to sleep after I threw up and took a bath so daddy played with me until 4 am. Dr. Lopoo said he isn't concerned about me throwing up just yet. He said because I have reflux and hiatal hernia I will always be an easy vomiter. He gave me an order to have another swallow test in 6 weeks to see if my duodenum is still dialated (enlarged from the food being stuck there). He also removed my steri-strips from my boo boo so now I can take regular baths. Mommy called my GI, Dr. Alberty, to see if my biopsy results were in to see if maybe she fed me something I shouldn't eat. I was checked for celiacs disease (gluten allergy) but the results were negative. All the biopsies were fine except the one of my duodenum showed inflamation. Dr. Alberty wants to see me Monday and he prescribed Reglan to help my stomach move the food down. I also had to get my Prevacid refilled today and since my pharmacy  deductible was not met yet, it was $170.00 for a 15 day supply. Mommy wants to wait and see if I will vomit again before she starts me on Reglan because the side effects are so bad. All I ate from  7 -6 today was some cheese its. Pawpaw Speedy fried some fish and I ate 1 piece and 3 french fries for dinner. Later I asked for some cereal and I ate a small bowl. I was playing with Mawmaw Vickie in my toy room and I told her the tube in my nose hurt me. Mawmaw told me it was to help me feel better but I just repeated myself that it hurt my belly. My hospital stay must have been tramatic to me since just out of the blue I will say things like that. I also got scared when mommy told me we were going to see the doctor today. I am keeping mommy on her toes. She hasn't even been able to unpack our suitcases from our hospital stay. I hope we all get some much needed rest soon. 

Everyday I get a little bit stronger

I woke up twice during the night last night and the second time I took some tylenol with codeine for my pain. Mommy and Pawpaw Speedy keep trying to get me to eat but I told them "I don't like food." I will take 1 or 2 bites and then I will chew the food and spit it out. Pawpaw has been pulling me around the yard in my red wagon so I can get some fresh air. I am getting stronger and walking more stable. Since mommy is so worried about me tripping and falling down (since my feet are pronated I fall down all the time)  she has to keep a very close eye on me. She doesn't want me to hurt my belly boo boo. When I played with my baby dolls today I played pretend hospital. I listened to their hearts and stomachs, and even took their temperature and gave them medicine. Since I can't get my incision wet yet I have to take baths in the sink with just a little bit of water. Mommy says she will never take simple things for granted ever again. Like being able to just pick me up without thinking about stretching my belly and hurting me, paying close attention to everything I drink and eat to make sure I don't get malnurished, having to weigh each and every diaper, being able to play in the bath tub with me, dressing me in pajamas instead of a hospital gown, sleeping in our own bed and using our own bathroom. It is so nice to be home with all my toys. Tomorrow mommy is going to collect all the toys I don't play with anymore and get them ready to donate to the hosiptal's toyroom so other sick kids can play with them too. Mom's friend Mandy John is orgainizing a raffle for a fundraiser to help with my medical bills. She even set up a bank account named Addison Gautreau Benefit Account at Bankcorp South for people to make donations. Mommy had Southern Belle t-shirts made to sell too. They are purple and say "Real Southern Belles know Blessings come in small packages" and on the front they say "I wear purple for Addison Gautreau" Purple is the national color for prematurity so that is why mommy picked that color. I also have a team for the March for Babies walk for March of Dimes. The walk is on April 28,2012. You can make a donation to our team at http://www.marchforbabies.org/team/t1761063 . Or sign up to walk with us. Thanks again everyone for all your prayers.

Day 8

Yesterday afternoon I had to be given extra fluids because I had not had a wet diaper in over 12 hours. After the fluids I started having diarrhea. My IV started hurting and it had to be taken out. Three other veins were tried but just not strong enough to handle the IV. My nurse had to call Dr. Lopoo and ask if he wanted me to receive a central line or could I try oral antibiotics. Thankfully he said I could try to go without the antibiotics and the central line. He also said I could eat whatever I wanted. I ate some popscicles and mashed potatoes. I tried to eat a french fry but I choked on it. At first I was scared to eat again but after a few minutes I took a few more bites. I had been asking for gumbo so daddy bought me a bowl from the cafeteria. I fell asleep around 8 and woke up a few minutes before 1. Mommy and me watched Finding Nemo and then she pulled me around in the wagon for 45 minutes. During my wagon ride I saw some cheese its in a vending machine and mommy bought me two bags, I ate close to half of the bag. Mommy finally talked me back to going into my room and I started watching Bolt and went back to sleep. I woke back up around 6 and I was ready to eat. Mommy ordered me scrambled eggs, turkey sausage patty, a banana and chocolate milk. I had 2-3 small bites of eggs but I was scared to swallow the sausage. I would chew it up and spit it out. I am still having diarrhea. Dr. Lopoo said since I was feeling so good I could go home. Mommy just has to be sure to keep a close eye on me so I don't dehydrate. I am so excited to go home! Since I have been home I have started walking but I am very wobbly. Someone has to stay very close to me so I don't fall and hurt my belly. I still have not eaten any real food besides the cheese its. I had 1/2 a popscicle and I fell asleep before our lunch was delivered. I slept for 3 hours but woke up in pain and mommy had to give me tylenol with codiene and I fell back asleep. Pawpaw Speedy is staying with us to help mommy so daddy can go to work. I have to be picked up with one hand under my booty and the other around my neck. Mommy is about to go to Walmart to get me some ice cream to make me milkshakes in hopes of me gaining some weight back. When I checked into the hospital I weighed 28.6 pounds and today I weigh 25 pounds. Mommy keeps saying I look so thin. I can't take a real bath yet because of my belly still healing so I can only take sponge baths. I follow up with Dr. Lopoo in 2 weeks. Please continue to pray for me to have a speedy recovery and I will continue to keep you updated on my progress each day.

Day 7

I slept pretty good last night. I woke up in pain around 1 and received morphine. I didn't go back to sleep for a few hours so me and mommy watched tv and put on pretend make up. I had my swallow test done betwen 7-9 this morning. A contrast was pushed through my NG tube. Because I was laying flat, it was pushed so fast and I have not had my prevacid just IV Zantac, I started having reflux and the physician assistant had to suck back up over half of the contrast. I still threw up all over myself and after that I had to sit straight up or I would dry heave. Dang reflux! The nice radiologist techs took pictures of me every 15 minutes and had to raise the bed each time so I was elevated and not flat. When I got back to my room I tried to step on a scale but I am to weak to stand. I tried to sit up on a baby scale but I couldn't do that either. My dressing had to be changed because I got vomit on it. My surgeon's resident said my test was okay that the liquid went down so she took out both of my drainage tubes. I drank 4 1/2 ounces of diluted apple juice and said I was full. I am resting peacefully now after my exhausting morning. As long as I tolerate my feedings I should be able to go home this weekend. Thank you everyone for all of your support. I just have to gain my energy back now. I will post again tonight about how my afternoon goes.

Day 6

I have not had a fever in 29 hours!!! I woke up complaining about my IV again and my hand and fingers are a little swollen. I took morphine for my pain and after it kicked in, I got a sponge bubble bath. This was the first time my hair has been washed since Wednesday. It felt so good to get all cleaned up. I even got to dip my feet in the bubbles. My hair is matted from just laying in the bed. After my bath I was slap wore out. It really took a lot out of me. My GI doctor's partner came to visit me. They will be in charge of my diet when I can start drinking and eating. I can't wait!! I keep asking for all sorts of foods, even a bite of a tootsie roll  and I have not seen one of those since Halloween. The doctor ordered to have my weight checked so I get weighed tomorrow. My surgeon has ordered another Upper GI swallow test for tomorrow and if it shows no leaks I can get my NG tube taken out. I took a decent nap today but woke up screaming in pain. I took some more morphine and then I just chilled. My nice child life specialist brought me some Mardi Gras masks and some princess dress up clothes and jewelery to play with. I got out of bed and sat on Mawmaw Vickie's lap for almost 40 minutes. I do not shake in pain when I am moved anymore. When daddy got off of work he came straight to see me. I started screaming in pain that my arm was hurting so my IV had to be removed. When mommy pressed the button to call the nurse I said, "Don't call the lady." The antibiotics are so strong, they just tear up my veins, that already are collapsing from me being dehydrated. I got IV #6. The nurse said sometimes you have to get an IV every 12 hours. I pray I don't have to because I am running out of veins to use. Since my IV was changed I started acting like my old self again. It really must have been hurting me all day long. I was talking to my night shift nurse and trying to pinch her with my toes on her legs. Mommy and Daddy couldn't believe their eyes. I started moving around in my bed and even scooting myself up to my pillow. Now that I am feeling better, I have to be carefully watched because I try to take of the IV tape, press the IV machine's buttons, and play with the draining tube coming out of my belly. I didn't have to take any tylenol today and it has been 7 hours since I have had any morphine. I am still on 2 antibiotics and Zantac. When I wasn't feeling good I was asking questions like what happened to me, Addie has a  boo boo, begging help me, and I kept telling everyone I loved them, and the nice nurses thank you lady when I was ready for them to leave me alone. I am so happy I feel better tonight. I hope I get to eat some ice chips tomorrow and maybe even drink some pedialite. Fingers crossed. I also told mommy to call the nurse for some chicken nuggets. Thanks for all your prayers, they sure are working.

What day is today?

We are so physically and mentally exhausted all of my days are running together. I keep having to ask Tre' questions over and over about what the doctor's say. Addie is sleeping peacefully right now so I will be writing for her. We are so proud to be the parents of such a strong little girl. I had a bad day yesterday and was angry with God for her continous suffering but today I am once again counting my blessings she is so strong and I have an amazing husband who could not be a better daddy. He is so good to her and hasn't left our sides. We are still battling her high fever. It comes on quickly and takes a few hours to go away and then appears again. She is still not showing any signs of infection at the incision site. We were also blessed with an amazing nurse who understands our sense of humor. My nerves have my stomach in knots and before she left tonight she jokingly asked if I had enough toilet paper to last until she returns to work on Tuesday. She is so sweet to Addie bug. She even let us take her on a wagon ride for a few minutes this morning. The resident doctor ordered a chest xray just to ease our minds even though Addison sounds so good. The xray was clear. Addison had labs drawn twice and had to get another IV. I am glad it is in her hand this time so when she feels better she will be able to walk. She has gotten so used to getting the tylenol supository that when I went to change her diaper, she said "No Momma, I don't like that thing." Not a whole lot to post tonight, I am very tired and plan on setting my alarm to check for fever every 30 minutes, if I can even fall asleep. I just wanted to post an update and also thank everyone for all your prayers and support. I told Tre' today, the sad thing is all we know about parenting is about having a sick baby. It almost feels normal being in the hospital. I am so used to things going wrong it is like I expect bad things to happen. I have horrible anxiety worrying about her. And it is killing me she keeps asking for food and drinks. She even asked for ketchup. Thank you to all her visitors, for  holding her hand, playing with her hair, and all her gifts. She loves them all and they have been a helpful distraction. Thank you to those of you that have fed us also. It really means a lot to us and it helps out our wallet, especially since we will be here a while. I feel like I am forgetting something but like I said, I keep getting my days confused.