Annie Katherine Osborne
 |
One Year Old
9 lbs 6 oz, 22 inches long
Hello all, Annie is our third and last child, she came to us a surprise. Annie was originally due on September 30th 2001, but decided to make an appearance on the 22nd day of June. What was even more of a surprise was what Annie weighed, not even a pound....she tipped the scales at 394 grams which is almost 14 ounces, she was 11 inches long. She was a miracle especially after doctors told us that she would die when she was free from the womb. We weren't expecting her to live, we were told to get ready so that's what we did. Annie was taken directly to the NICU and was doing fine on the vent. I think we hit every bump and went up and down every single hill on the rollercoaster. She had two bouts of pneumonia. We were actually very lucky she had no hole in her heart, no brain bleeds. To us she was perfect just tiny. Annie stayed 3 months and 4 days in the NICU at Methodist Gemantown Hospital. She was known there at the NICU as "TIDBIT". On the 26th day of September Annie was transferred to Lebonheur Children's Medical Center. Before transferring her there we were told that she had a stridor and was probably going to have to be trached, it wasn't until after the bronchoscope was done that we found out Annie ended up needing a trache, She did really well off the vent and O2, but was really struggling to breathe. So, her ENT Dr. Jerome Thompson did the trache surgery due to severe Subglottic Stenosis. The surgery went great...It was me whose knees locked up when I saw her after the surgery.. We were then told she would be just fine and would have reconstructive surgery when she is around two and half years old. We ended up needing another surgery to place a g-tube for feeds, she was just not able to swallow fast enough to gain weight so almost 2 months after the trache being placed she got her g-tube and we finally were able to go home...During her stay at Lebonheur, she had a total of two surgeries and was in the ICU twice. After finally coming home we ended up back at Lebonheur for Tracheitis once in December and once in March, Both stays were only for a week. Annie is now 14 months old weighs 10 pounds 4 ounces she is on Pediasure for weight gain and whole milk, she's crawling everywhere, pulling up on everything. She is learning to make sounds with a Passy-Muir valve, but so far the only thing she does with it is look at us like were crazy. Her trache is a special made Bivona 2.5. In September she will go back to Lebonheur to have a size 3 put in...We are hoping all goes well....We are also hoping that very soon her g-tube will be removed, because she is taking everything by mouth 4 to 8 ounces in 20 minutes.....Annie also is teething right now, she already has 8 teeth, and chews on everything. She also has Physical Therapy twice a week for an hour, Speech twice a week for and hour and Occupational Therapy once a week for an hour, and in 6 months from the first evaluation she went from newborn to 1 and 3 month level to now at 13 months and 18 month level. So we are very proud of how far she has come...And we have so far to go.
Update, December 2002: Annie is now 17 months old!!!! Annie just went back into the hospital for a upper respiratory infection, but since Annie is still small (11 lbs.) the doctors and residents decided to get genetics involved just to make sure there was nothing else going on that was making her sick, they ended up doing two sweat tests to rule out cystic fibrosis, a brain scan, bone age, renal ultrasound, chromosome blood work, barium swallow test and an upper GI everything so far only suggests the trache tube that she has in 2.5 neo Bivona 25mm is too small and is not allowing accurate oxygen supply to the lungs which is keeping them unable to grow from the BPD and they have also mentioned Russell-Sivers Syndrome which there is not a test to prove that she has but has a lot of the characteristics of the syndrome, Annie has been put on continuous feeds at night to help her gain extra weight plus giving mommy and daddy a little extra sleep at night. We just have to get AnnieCakes to gain weight and we'll be OK. Her new trache tube a 3.0 neo Bivona 25 mm will be in soon. more updates later........
Update, February 2003: We have wonderful news!!!! On the 22 of Jan. we went to same day surgery at Lebonheur, but the intentions were to get a bigger trache and to let Dr. Thompson have a look around the trachea, but they didn't have the new trache so we didn't get it yet and when Annie went to recovery Dr. Thompson came into her room and told us that we will for sure have the trache for another 2 to 3 years, but he most wonderful thing I hears come out of his mouth was that SHE DOES NOT HAVE TO HAVE RECONSTRUCTIVE SURGERY to correct the stenosis only a few LASER surgeries a year and she'll have it out......Hey I don't know about ya'll but I'll take laser over total reconstruction of the airway any day!!!!!!!!! We are very excited, just wish she would grow a little better. She is now 13 pounds even and 24 and 3/4 inches tall, walking everywhere sometimes you'd think she has rollerskates on her feet she walks so fast. Nobody believes us when we tell them she's walking, so we have to prove it to them. She also made her first true sounds with her trache it's the B sounds it's so raspy and whispery, She still uses her sign language to tell us more all the time but right now that is all she knows. I'll be sending in updated pictures of her soon to the website. More later....Take care.....Rosie
Update May 2003 - Annie will be 2 next month and is still very small for her age. She is barely over 13 pounds and is almost 26 inches long, but let me tell you she's going everywhere, sometimes you would think she had roller skates on her feet, she doesn't let anything or anyone get in her way. She is improving in her sign language, and was recently named March of Dimes Ambassador for her Daddy's work, and all of Desoto County( our county where we live). She loves to go outside, but isn't to sure about the grass. Recently she was moved up a trache size she is now in a 3.0 Bivona, but it is still cut special for her it's 25mm long. Still nothing on her most recent tests from the endocrinologist that was done in Feb., but that can take up to 6 months for the results to come back since it has to shipped to a lab in California. We hope she hits a huge growth spurt soon, because I get so sick of everybody pointing and saying "Oh my gosh she's so small, and tiny, Is something wrong with her" kind of mess every time we go out. Or they say "Look at that baby" when really she's a little girl, not a baby. Uggh will it ever get any better???? Oh I almost forgot Annie loves to eat "SLIM JIMS" and "PIZZA ROLLS" and loves to drink sweet tea and juice....
 |
Update, August 2003: Annie is our county Ambassador for the March Of Dimes. She turned two on June 22nd. She weighs a little over 15 pounds and is still 26 and a half inches long, she has moved up to a size 2 diaper and she can now wear a size 3-6 month outfit, if it's pants or shorts we still have to pin up the sides or she looses them. She is signing so much now, she knows her colors, and how to sign mama, dada, duck, bird, cat, dog, fish, book, more, finished, night-night, baby, grandmother, grandfather, and shhhhhh, and sometimes she can put two words together. She has quite the temper, you wouldn't think that something so small and sweet can have such a temper, well I'm here to tell you she may be small but she's mighty. She loves to go outside and wants to play with the bigger kids and sometimes she gets them to come over and play with her. I know that it doesn't look like we will ever get the trache out, but I have to let God deal with it, I know now that it has been out of my hands for a long time, and when He decides she's ready than she'll be ready... I know that she's our miracle and I have to be happy with what I have and not want more than what I've got already, to be still and be patient, and that she'll eventually catch up. I thank my lucky stars for her. She has developed such a character she can't talk but you know what she wants. Another thing is she really hates wearing a diaper, but where am I going to find training pants to fit her little tush???? An unbelievable thing happened the other day, we went to church for the first time since she's been born and she knew exactly what the song book was for "she grabbed it did her sign for book and started rocking back and forth clapping her hands. Now someone try and tell me that this baby wasn't heaven sent. I don't think I'll ever be able to put into words exactly how much I Love her, and what I feel every time I look into her eyes. She is just amazing. She hasn't been sick in the hospital in a very long time now, but the bad months are coming. We just pray they won't be too hard on her. All the tests she had are back and they can't seem to find anything wrong with her...She was just born too soon and was too tiny..that's it.. She's getting to where she doesn't like to take naps either, she still has her therapy 3 days a week on Monday, Thursday, and Friday. I'm pretty thankful for her therapists they have helped her come so far. I'm still getting the "oh she's so tiny" stuff all the time, or "look at that baby walk." I even had one lady tell me I'm rushing her and I'm hurting her legs by making her walk early, but when she found out how old she was the lady shut up and walked away...Some people just don't understand that sometimes saying nothing is better than saying anything at all...Rosie
Update, Jan. 2004: Happy New Year everyone! Annie is now TALKING !!!!! It's is surely something I didn't think would happen. She repeats almost everything you say. Just all of a sudden she broke loose and is getting better everyday. Her favorite words to say are "Wuv ou" (Love you) I "Hot", and "Pop, Pop" and "No". It is still raspy and almost whispery, but you can hear it. It's wonderful, She was just discharged from one of her therapists (OT) Monday, so now she just has speech and PT. She has been doing well this fall and winter (knock on wood). She finally had ear tubes put in on the 26th of November (Thank You Dr. T). We haven't had a trip to the hospital except for the same day surgery for the tubes since March (again knock on wood).
She has developed such a personality and character, she loves dancing around the house by keeping one foot planted firmly on the ground and spinning with the other foot. She is so funny...Ohh, and has such a temper...She looks more and more like her pop pop everyday. I just love waking up everyday wondering what new thing she'll do. She absolutely hates it that it's gotten colder, because she can't go outside and doesn't understand why she can't. She loves to color. She will not sleep when her daddy is not home at night, so I dread when he's away at work. I keep kidding around to my husband that I 'm going to record him snoring just to see if will help her sleep those nights he's away.
Her cousin NaNa is 17 months old and just towers over her, but she lets him know who's the boss. She's just you're typical normal everyday 2 year old, the only difference is she's just a lot smaller. She will have all of her follow-ups in March and I will have more to write about then...
I have included a picture of Annie and her daddy on the 4 wheeler on Christmas day.
 |
Update, May 2004: Annie is doing wonderful...We had one overnight stay in Lebonheur for two doses of antibiotics in I.V. She had an MRI and an EEG in April and do not know the results yet, I'm sure if the Dr's. saw anything bad we would know about it. She still has her little movements more now in the car seat, but other than that she's pretty normal, she was discharged from PT last week, which was sad because Christi has been with us since the very beginning, and now what will we do with our Fridays? We are going to Orlando on vacation for 2 weeks, I'm nervous and scared, but excited and thrilled at the same time. I can't let her disabilities scare me forever, and it is a vacation well overdue. I'm sure she will do fine, at least I pray. I'm sending updated pictures as well.... Love Rosie
 |
Easter 2004
Update, June 2004: Annie is now 3 years old, she still weighs somewhere between 17 and a half to 18 pounds, We just returned from vacation from Disneyworld, and she did great, it was I that ended up getting sick, anyway she now has a 3.5 neobivona customized to 25mm still because of her size...We are hoping she hits a growth spurt soon...
Her attitude has gotten worse maybe it's because I have spoiled her all this time. She had a EEG and MRI in April but when we followed up with her neuro Dr. Jabbour he said she had no abnormalities and that her tests all showed normal, so what makes her have those weird hand and arm movements when she's like super tired and about to fall asleep, and when she's drifting into nighty-nite land, I have no clue, he just diagnosed her with having partial seizures, and said she will eventually grow out of it, he also said it could have something to do with her breathing??? Hummmm. Maybe I should ask her lung Dr. She hasn't been sick except a rotten ear ache and infection and that was because we went to the drive-in movies and sit in the back of the truck and the wind was blowing a little, dum-dum momma.
She will not give up the bottle, but hey it took us 18 months to get her to take the dang thing, who am I to force her to giving it up right now? She is starting to develop granulation in the stoma, so off to Dr. T's we will go. Ohh yeah I almost forgot, she has been fully discharged from her therapy PT and Speech, mainly because she turned 3 but she had mastered all the goal anyway. So, I didn't mind so much her being discharged, it was just sad because you have these wonderful people who become members of the family that come into your home three days a week and work with your child and are strict but love on them the same time.. and now I don't know what to do with those days when Kelly, Andrea, and Christi are supposed to be there. They brought Annie so far, we were truly blessed with our therapists.
Annie still uses sign language but talks at the same time, which is cute. Annie likes to bite now, which is a bad thing, because when she doesn't get what she wants she catches you off-guard and bites a hole wherever she can reach. She loves that it's gotten so nice outside, but hates when it rains she doesn't understand that you can't go outside to play when there is a massive amount of water falling from the sky. She's my little pumpkin doodles, no matter how many times she kicks her feet, and bites me, I love her all the same...Rosie
Update, Jan 2005: Hope everyone made their New Years resolutions! Not much of an update on Annie except we finally hit 20 pounds. It's about time if I wasn't so big I probably would have done a back flip. Anyway, she has been doing pretty well, except a couple of small infections but nothing drastic.
As some of you may know we are getting ready for Annie's Make-a-Wish trip which she knows nothing about. It's all a surprise, they won't even let me know any details yet, which I can't stand being left in the dark about things, but it's alright I guess I can stand to be surprised.
The last appt with the ENT didn't go as I had hoped, it seems like we keep getting put off from doing anything. Just the same tired excuse that has been haunting us forever the words "She's just too tiny" Uggh, is there ever going to be one day that I don't hear those words? Guess not??? Her Endo appt went well, we were getting the process rolling finally for the GHT, but now we have to wait even longer "NEW INSURANCE" started at the first of the year so now I'm madder than mad, because now we have to start all over again, with nutritional consults and diary of intake and all that jazz. Annie gets really ticked and throws a rod now because it's cold and I forbid her to go outside, she will thank me when she gets older, but just seeing her stick that bottom lip out and cross those arms just kills me. As I have mentioned in the past she has a very bad temper so that does not help any.
Her favorite shows on TV are Dora, The Backyardigans, Bear in Big Blue House, she'll watch any cartoon, but it has to have something that will catch her attention or she'll get mad shake her head from side to side and I'll have to find something else, she also loves to watch Funny videos, or Animal funny videos, if she stays up at night we watch King of the hill together. She is very much the T.V. hound, and don't let there be a commercial she hates those but I just try to explain that commercials is what pays for the cartoons and stuff you like to watch to be on T.V. but she has no clue as to what I'm talking about so I just deal with it the best way I know how and flip through the channels until her show is back on. Right now she fights with her cousin that we watch and guess who wins? She does. I'm telling you she may be small, but the girl is mighty. I will update you more after we get back from her Make-a-Wish trip.
- New Pictures Jan 2005
Update, August 2005: Hi everyone, well here's what's been going
on lately.
Annie is just the most amazing little girl, and I am very proud to call her my
baby girl. In June, she turned four and she is very proud of that number 4 she
tells everyone within an arms reach that she's 4. She is still small standing at
2 foot 8 the same size as mini me in the Austin Power movies but she's still
teeny tiny wearing 12-18 month clothes in some stores and 6-12 in other stores
it just depends on who makes the clothes. She had a scheduled surgery for an L&B
in July but ended up having a reflux flare up and had to be rescheduled and will
now be in August 17th, but this time he added more procedures, (L&B, taking her
ear tubes out since they are out in the ear wax and hasn't done her any good
anyway, and doing measurements and a possible trache change) so she'll be under
a little longer. Which worries me a little. Annie will be starting Pre-K for
children with developmental disabilities in a small building located between her
big brother and big sister's school. I know at first I will be sitting outside
in the car for the first couple of weeks and then slowly but surely I'll let go
and go home. Until it is time to leave to pick up the kids from their schools.
Update, August 17, 2005: Annie had surgery today, Dr. Thompson her (ENT/Head and Neck Surgeon) came to the holding room which is where we went form the O.R. staff to prep the room for her, he picked her up and wouldn't let the nurse carry her, once they were in the O.R. he cradled her until the the sleepy medicine took effect, then he gently laid her down on the table and washed up, once he was in doing the L/B he noticed that her vocal cords had some webbing, he says it was from her being intabated, in the NICU, so I'm not exactly sure what that meant I was just glad that she was back from surgery and was once again in my arms, he said that he may have to end up doing the reconstructive surgery with the rib graft after all, but would try to do a laser surgery but wasn't sure it would work, but before he did any of that she would have to be much bigger. The good thing is that she is no longer in the same customized 25 mm length trache since she was three months old, first she had the 2.5 but it was still customized then the 3.0 and it was still customized and then the 3.5 and it too was still customized to the 25mm. Now she is a big girl and has finally grown length wise to get a regular NEO Bivona 3.5 at it's regular length. I was excited but so scared. The recovery room nurses said she was a great patient and it seemed as though her breathing became better and her sats were always at 100, I am so proud of her. Now I get to worry about the reconstructive surgery, and how much more dangerous it is than the L/B surgery. At least it will be a couple of years before we even consider it, just for the simple reason that Annie has to get plump, meaning she' s gotta get some meat on her bones and be a little stronger. With her being 4 and still wearing 12 month clothes and only weighing 21 lbs. she's got some growing to do. Dr. Thompson is wonderful with her and Annie calls him her sweetheart, and really is the only Dr. that she has taken to, the rest scare her, because they have no bed side manner, they don't play with her or even act like she's there except to ridicule me for her being tiny. So whenever we see Dr. T she is excited. I have noticed a change in her voice, it seems like I can understand her better, it is however still whispery and raspy.
On the other subject: I am having to fight the school board on the fact that they do not want to provide Annie with a nurse so she can attend pre-k. They gave me two options and neither of the two will work, 1. the board wants me to send her on a bus with no nurse to a pre-k class in Hernando, which is another city and a good 35-45 minute drive, which they have a nurse there. I have a problem with the bus, no nurse and no seatbelts so that means as little as she is she'll be hitting the roof of the bus every time they hit a bump or would slide out of the seat. Plus it is just way to far for her to be away. They did however give me the option to drive her there and back but like I said it way to far. 2. She can get up at 5:30 in the A.M. and miss 4 to 5 hours of what she needs a night of her kinderkal thru her g-tube via kangaroo pump, because they took the nurse that was in Annie's afternoon class away and moved her to the High School. So I am not going to sacrifice her loosing 5 hours of her kindercal just so they can be happy. I am going to the board and fighting until I get answers and Annie's needs are met. I will not give up without a fight. If I have to I will get the media involved. No one from the board has responded to the two e-mails I have sent them requesting a "Procedural Safeguards Notice". So I guess I'm just going to have to play hard ball. Today we had to drive to Senatobia which is an hour and 30 minutes away to the Mississippi Medicaid office to drop off her annual paperwork, so she doesn't get kicked off of Medicaid, if that happens we will be in such a creek. It helps us pay for whatever my husbands insurance won't pay, except co-pays and deductibles which all has to come out of out pocket. We had to come up with the $200 dollars, as Annie's surgery copay.
Annie has been practicing writing her name and the letters of the alphabet and she's actually doing a great job, we got her one of those Little People letter activity books that comes with markers that wipe off, and so she copies the letters like they are in the book. She one smart cookie. One thing that I did notice is that after her surgery she sure did sleep a lot, and her throat was really sore and she didn't want anything to drink, but she has made up for it already. She ate some chicken nuggets and drank a coke, and ate some of her fries.
We are going camping again this time, the kids will be able to walk down to the lake from the campsite and go swimming on their little beach, Annie is already excited, we're taking some friend of ours along, so it will be fun watching them play.
I wanted to thank every one of you guys for always being there for me when I am feeling blue or when I just need somebody to vent feelings, or just when I need advice. So Thanks you guys are my extended family, and even though we have never met, I love you all. You are all like my sisters and brothers, and we all share a common bond. We all have kids with traches and we all just understand one another. Alright until next time, please keep us in your thoughts...Love Rosie
- Annie's Hospital Pictures Aug 2005
- Email Mom Rosie Osborne
