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.

Hospital Day 4

I had a rough day today my eyes was swollen shut ( the doctor thinks they were swollen because my tissues were absorbing the IV fluids) and I ran a temperture of 103.7. I shake so bad when I move because of the pain. The doctor ordered labs which the lady had to stick me in both arms because when she stuck the first one the blood was moving too slow to get enough for the test and they had to cath me to get an urine specimen. The doctor told mommy and daddy my lab results were good but we have to wait for the results of the blood and urine cultures. My fever dropped to 98.9 and I slept most of the day and the swelling in my eyes went down. I also have three blisterlike areas on my right elbow and two on the right side of my face which we do not know what these are for sure.  I did roll over two or three times today by myself. Mom and mawmaw Vickie gave me a sponge bath and it made me feel so much better. Dad and pawpaw Speedy has not left my side either. Both along with mawmaw and mom take turns holding my hands and stroking my face to help me feel better. I did smile when my Uncle Austin came to visit me. I let him hold my baby doll Sarah and I lifted my leg and said do you see my IV?  It is now 800 pm and my fever is starting to climb again it is now 100.0 so please continue to pray for me. Oh, a few times today I had to hold my purse on my arm, hold all my balloons everyone gave me, and snuggle with my pink teddy bear and all my favorite blankets.

Hospital Day 3

Last night I was in pain and did not sleep, so neither did mommy or daddy. My morphine was increased from every 4 hours to every 3 hours. This morning I was hurting even worse, my heartrate was high, sweating bad, and my breathing was bad. Dr. Lopoo increased my morphine dosage and added Tordol, Ativan and tylenol supositories to help me with my pain. He chewed out my poor nurse for letting my pain get so bad. My pain got bad because my IV wasn't working so I had to get IV number four in my foot. After I recieved my pain cocktail I relaxed and mawmaw Vickie painted my finger nails and toenails. I took a two hour nap and my body started jerking in pain again. I woke up crying and upset with my NG tube so the nurse had to retape it down. We talked with the surgeon again and he said there is no way of knowing if I was born with this stricture and it was missed or happened over time. He did say I had to be in a lot of pain. Now they are concerned about me getting pneumonia from lying in the same position so now mommy is holding me in her arms like a baby.

Day 2 of Hospital Stay

We checked into Our Lady of the Lake Children's hospital at 8 am yesterday. I had an Upper GI Swallow series test that showed liquid has no trouble passing through my stomach. The surgeon didn't want to just cut me so he contacted my pediatric GI. They decided to do another EGD first to see what is going on. My IV was messed up this morning so it had to be taken out. I went down to surgery at 12 pm. A new IV was put in my foot after I was put to sleep. The EGD showed the narrowing of my duodenum and it had a piece of food stuck in it. That is why the liquid has been passing through but not food. The first part of my intestines was "balloned up" because the food that could not get through was sitting in there causing irritation and ulcers. The GI, Dr. Alberty, took biopsies of the irritation. Now it was the surgeon's turn. Dr. Lopoo discovered the narrowing was not caused by scar tissue like we thought. He could not see where the original surgery when I was 1 day old was done. So this meant I have always had this. I was born with a closure and narrowing. Only the closure was noticed and fixed when I was 1 day old. What was fixed today was narrowing, not a full closure. Dr. Lopoo said it was in a very hard place to get to and my appendix was actually pushed up there too so he was able to remove it as well. Since it was in such a hard place he had to cut me bigger than the scar I already have. I can't be mad at my first surgeon because I was so small, 3 pounds, and just think how small my intestines were then. Must have been really hard to see. Mommy and daddy are extremely upset I have been suffering like this my whole life and no one was listening to them, thinking it was reflux. My surgery took 1 1/2 hours and mommy and daddy didn't get to see me until after 4 pm. I have a NG tube coming out of my nose suctioning my belly. I didn't like it when I woke up and pulled it out. It was put back in while I was awake and now I have to wear mittens that are strapped on my arms. I also have a suction tube coming out of my belly close to where my diaper starts. I haven't had my diaper changed in 12 hours so my fluids have been increased. My temperature has been 99.9 so my nice night time nurse is keeping an eye on me. I am recieving morphine for pain and antibiotics. I wish I could say I have been resting peacefully but I have the shakes which is a side effect from the anesthesia. I fall asleep for a few minutes and then I will jerk and shake. I have to let my stomach heal for a few days so I can't eat or drink. After a few days of just fluids from my IV, I can start a clear liquid diet, then a regular liquid diet, and then soft foods and so on. I will be in the hospital at least 1 more week. I will try to post each night on my progress. As always thank you for all your support and prayers.

Preparing for the big day

We have been very busy the last few days. I have only thrown up two days this week. Me and Mommy had to go to the laundry mat because I made a mess on the comforter and mattress toppers. I went to visit Maw Maw Vickie and Paw Paw Speedy Friday afternoon in Ocean Springs, MS so mommy could work. She has been working nonstop the last few days getting everything she can done before my hospital stay. I accidentaly broke her laptop screen so she won't be able to bring it to the hospital. Mommy has also been cooking all kinds of food to freeze so daddy will have something to eat and for when we come home she can concentrate on taking care of me. She says it can't get any easier than defrosting and eating on a paper plate. Mommy has already started packing for us too. Wow the things we have to bring! Mommy even packed some toys for me just incase I feel like playing. Mommy never knows when I will get sick and vomit so she always has to pack lots of clothes for the both of us. I have my last therapist appointment Tuesday morning. I am really going to miss my therapist, Mrs. Michelle. I just love her! She has taught me so many things and mommy says we can't thank her enough. She said she wants to visit me while I am in the hospital too. I think we will always keep in touch with her. Maybe when I grow up I will help special and preemie babies too. Please continue to pray for me, my doctors and for my sweet mommy and daddy.

Websites

My mommy found some websites that explain my birth defect Duodenal Atresia and one that explains the surgery I will have next week. I have started throwing up again today. Mommy has had a very emotional day. I am so sweet, she was crying and I brought her a tissue and patted her face. I told her it was okay. But I think I made her cry harder.

http://www.answers.com/topic/duodenal-obstruction

http://www.yoursurgery.com/ProcedureDetails.cfm?BR=1&Proc=80

What kind of surgery?

Sorry, I think I confused some people. The name of my surgery is Duodenal Artresia Repair. The surgeon will repair my stricture. Since I have been so busy in and out of doctors office's, I caught a cold. Mommy is trying to care for me without taking me back to the doctor but just have to wait and see how I feel in the next few days. I can't be sick for my big day. Thanks again everyone for your support.

Surgery Update

I saw my surgeon, Dr. Lopoo yesterday. Yep, that is right. 4 doctor appointments and a trip to the ER all in 13 days. With a $40 copay, you can see how my bills add up quickly. Oops! I forgot to tell you about my latest trip to the ER on my last post. My mommy caught a stomach virus on Christmas day and I caught it 2 days later. I threw up 19 times in 6 1/2 hours. I saw my pediatrician that day and she gave me a prescription for Zofran to help me stop vomiting. Mommy had lots of laundry to wash. 2 days later I broke out in a horrible rash and the pediatrician had a full schedule so I had to go to the ER. The rash was all over my body and it was so bad, the doctors thought I had chicken pox. They said not to give me the Zofran anymore incase it was covering up something else going wrong. Without the medicine to keep me from vomiting, I started right back. 4 days later I went to a new pediatrician's office. I want a doctor that will give me an appointment when I need one. Her name is Dr. Guidroz and she is so nice. She spent 30 minutes with me going over my complete history. She even called a pediatric GI, Dr. Alberty, on his cell phone because his office was closed for the holiday. They agreed I had gastroparesis. Which is temporary paralysis of your stomach. It sometimes happens when you have a stomach virus. Dr. Guidroz wrote me a prescription for a stomach "muscle relaxer" that will help my food move down through my stomach. My rash turned out to be an allergic reaction to the Zofran not chicken pox. What bad luck I have! I will always be an easy vomiter and I am allergic to the medication to help me.
I will check into Our Lady Of The Lake Hospital on January 18th for an Upper GI series at 8 AM. My surgery will be the next day. Dr. Lopoo will make the incision in the scar I already have across my belly. If he can reach my appendix, he will go ahead and remove it. Only 5% of people get appendicitis but just to be safe he will be preventing a future surgery. I will be in the hospital for 4-6 days. This may be a surgery I have to get every couple of years as I grow to be a big girl. I just had an Upper GI on November 18th, but the doctor wants another one to check for changes.  So my parents are paying for the same test just two months later. It took 5 hours for me to see the doctor and preregister for my hospital stay. I had to meet with a nurse and an anesthiesiologist to go over my history. The anesthiesiologist called my cardiologist to get my records to make sure it is safe to put me to sleep. What a small world, he is from Gulfport, MS.
Mommy and daddy say they cannot explain what they are feeling. Not just helplessness and worry to see me go through all of this. You really can't understand it until you walk a mile in their shoes. They are embarrassed to ask for finanical help but feel they have no choice. Mommy even had to cancel her health insurance to pay for my monthly medications. Isn't that weird how our country works? Two people that work and pay taxes cannot get help with their sick child but other people who have healthy babies can get free insurance and never receive a bill. I am not judging people but it just seems unfair for my hard working mommy and daddy to be declined assistance. Thank goodness my mommy's nice employer allows her to work from home so she was able to keep her job and stay home with me. If she had any other job there is no way she would be able to work.
Thank you everyone as always for your prayers and support. Please continue to pray for my mommy and daddy's strength, guidance for my doctors, and for me a quick recovery.

My story

Hi! My name is Addison Grace Gautreau and I would like to share my journey with you. When mommy and daddy met in Destin, Florida in April 2006, it was love at first sight. Mommy moved 6 months later from Ocean Springs, Mississippi to live with daddy in Gonzales, Louisiana.  Daddy asked mommy to marry him in March and they were married on December 1, 2007. They immediately started planning for me. After trying for a year, mommy and daddy had some test done and the doctors gave them some sad news. The doctor said after 14 months of trying with no luck and the test results proved they would have to start fertility treatments. SURPRISE! Before ever starting treatment and just 2 weeks after the bad news mommy found out she was pregnant. It was the happiest moment of both of their lives; well of course until I was born.

 My due date was December 4, 2009, almost on my parent’s anniversary. Mommy read all the pregnancy books and ate very healthy so I could grow big and strong. During my 20 week ultrasound the technician could not get a good look at my heart so the doctor ordered another ultrasound in 4 weeks. That ultrasound showed mommy had lots of amniotic fluid so maybe she had gestational diabetes. Mommy passed the glucose test so nope, it was something else. The doctor ordered another ultrasound in 3 weeks. My 27 week ultrasound revealed I had a birth defect that is 1 in 10,000 births. It is called Duodenal Atresia. It is very common in Down Syndrome babies. Mommy saw a neonatal physician the next week and he confirmed my diagnosis. This meant since I was unable to swallow the amniotic fluid it would continue to grow and could cause mommy to be very uncomfortable and hard for her to breathe and I would arrive earlier than my due date.

My Maw Maw Vickie came to visit mommy to help her get all the nesting done. My daddy was out of town hours away at a fishing tournament. Mommy was having contractions and she went to the hospital on Friday night around 8 PM. The nurses did some test on mommy and then the doctor came to give us the news. Mommy’s water was leaking and had caused an infection, she was in labor. The doctor said it was not the best case scenario for me, he thought I was septic. I was born hours later at 3:41 AM on September 26, 2009. Don’t worry, daddy made it in time to the hospital. I was 10 weeks premature. I weighed 3 pounds and 12.2 ounces and was 17 ¼ inches long.

There was a team of neonatologists waiting for me and they placed me on a ventilator to help me breathe. I was born with 2 heart defects, a PDA and ASD. I had surgery the next morning to repair my stomach. After my surgery I weighed 3 pounds 6 ounces. I had jaundice and anemia. Mommy didn’t get to hold me until I was 5 days old and it was just for a few minutes. While I was in the NICU for 5 weeks I had many ups and downs. I came home on October 31st and I weighed 5 pounds. I even got to dress up like a pumpkin for Halloween. I had an apnea monitor and caffeine medication to remind me to breathe. I was only home for 5 days and I had to visit the ER because my monitor was going off so much. I was admitted for 4 days and came home on continuous oxygen. A home health nurse came to visit me 2 times a week and I had 8 doctors all of different specialties to follow up with.

I continued to grow big and strong but I had horrible reflux. Mommy couldn’t even lay me down to change my diapers or spit up would come out of my nose.  I saw many doctors, cardiologists, ophthalmologists, neurologists, pulmonologists, surgeons, orthopedics, and I have a therapist that visits me once a week.  I have so many scars from the NICU it takes fingers and toes to count them all. By January 2010 I had been taken off my continusous oxygen and the apnea monitor. Mommy was excited to not have to worry about wires while changing my diapers and giving me my baths or having to bring all the equipment to my appointments. I received 6 months of RSV vaccines. The dosage goes by weight and each vaccine was $3000-$5000. I was discharged from the cardiologist when I was 9 months old and both of my heart defects are heeled.  The cardiologist told mommy if she gets pregnant with a brother or sister for me she would have to visit him to check their hearts too. Mommy and daddy just want to spoil me but I keep asking for a baby brother. Because my reflux is so bad I wasn't able to do tummy time and  I started crawling when I was 9 months and 2 days old. I weighed 20 pounds 12 ounces and 28 ½ inches long on my 1^st Birthday!!!

I took my first steps when I was 13 1/2 months old. Because I am flat footed I have foot pronation, which means it looks like my ankles are going to touch the ground when I walk. My pediatrician said she didn't think I qualified to receive RSV vaccines this winter because I was gaining weight. I had RSV when I was 14 months old. I was able to stay out of the hospital because mommy and daddy took such good care of me. It took 3 rounds of antibiotics, steroids and 5 weeks before I felt better.  In April 2011, I had my adenoids removed and tubes placed in my ears. I was snoring, having sleep apnea and as much as I stayed sick I had lots of ear infections. By my second birthday I had many follow up appointments. My eye doctor said I don’t have to visit him for 2 more years! I was visiting him and my neurologist every 6 months. My neurodevelopment doctor said I tested as a 29 month old and I was only 24 months (21 ½ corrected age) so she discharged me a year earlier than expected. She even gave me a certificate for my baby book. Mommy is always asking me questions like, what color is this, what shape is that, count this, etc.

I was still snoring and having 5-8 second apneas so my ENT took my tonsils out on November 2^nd. I had to stay the night at the hospital but I wasn’t scared. I am still suffering from reflux and I vomit all the time. Mommy and daddy wanted some answers and changed pediatricians twice. The nice doctor mommy works for gave me a referral to see a gastroenterologists. I had an EGD done on November 18^th. I have hiatal hernia, esophageal ulcers, reflux, and a stricture. I even had old blood in my tummy. The nice doctor stretched open my stricture but he told us sometimes it doesn't work. After the EGD, I had to go straight to the hospital for an upper GI swallow test to check for other blockages. The radiologist noticed my stomach only empties when I lay on my left side. When I was laying on my back or right side the fluid barley drained. Because mommy and daddy are worried about me choking and I still don't sleep through the night, I have always slept in their bed. I sleep in a nap nanny because it is elevated and helps with my reflux.  I have vomited 42 times in 39 days. Little things make me vomit, like coughing, hiccups or if I cry hard but, sometimes I vomit for no reason at all.  I was referred to a pediatric surgeon to have surgery again on stomach. The scar tissue from surgery when I was 1 day old is closing the opening. This will be my 5^th surgery.  Next month I will see my orthopedic doctor about my feet and I will get to order my special shoes called orthotics.

My medications for reflux and ulcers are $210 a month not including if I get sick and have to get antibiotics filled. There is a generic for Prevacid but it has been on back order for several months and the pharmacist says there is no telling when they will get it in. Because I take it twice a day my insurance will only let me get it filled every 15 days and it is a $70 copay each time.  My mommy and daddy spend an average of $4,000 a year just on my medicine and copayments for my visits with all my doctors. They have applied for financial assistance with my medical bills from the hospital I stayed in for 5 weeks and from the state but were denied each time. When I was born mommy and daddy were told by the hospital's social worker I would qualify for Medicaid as a secondary insurance because being born premature is considered a disability. But when I applied I was denied because according to them I was 11 ounces to big to qualify for my gestational age. They make monthly payments to 2 surgery centers, 3 hospitals, and many doctors. It will take 27 years to pay off the bills I have from when I was born until 2011. I had 55 therapy sessions and 43 doctor appointments in 2011. Thank you for reading my story. I will keep you updated on my progress.