A Mothers Love

Icky o'l Winter

2009-11-13T10:15:00.000-08:00

The first thing I can say is we are from Florida. We arent used to having harsh/cold winters, & what may be not so cold to you....is freezing to this little family :) Oh and we now live in TN, which our winters consist of snow and...pretty cold weather.

We have had a run of sickness's going through our household for the past two weeks. BLAH. I have been diagnosed with sinusitis today. Got some antibiotics & some mucinex hopefully Ill sleep well tonight...finally. Krista has the sniffles, Nate has a sore throat, BUT little Miss Kaylee is healthy :) I think the weather change is affecting her respiratory system and affecting her o2 level because they do fluctuate right now but she hasnt had to be put back on 02 yet.

Our little munchkin has 6 teeth!!!! She is starting to get the hang of partially sitting on her own, rolling over from left to right and playing on her tummy more. Its a glorious thing. Now I have to figure out what Im going to do once she is mobile with all her tubing! Kaylee is starting to get so spoiled, I love it. Shes always been such an independant baby. Wanting to be left alone or to just lay and play and here lately she will cry & stop once you pick her up!!! Im so excited. She melts my heart. My goal is that she will be mobile within a year or less from now. Mobile however she chooses, crawling, scooting, using a chair, rolling....thats my goal!!

This is a nice and quik update Ill be posting pics of my little ones later I have some great Halloween pics :)

Kaylee was Snowhite and Krista was Ariel, I must say if I didnt tell you that Kaylee REALLY isnt Snowhite she would have you fooled :) She was the most perfect Snowwhite!

Just showing off :)

2009-06-27T19:56:00.000-07:00

Thats right TWO teeth!

Summer =)

2009-06-20T13:51:00.000-07:00

I never imagined that Kaylee would be such a little.....adventure....Im not sure that is the right word but it suits me for now. She is all smiles and has a personality with tons of attitude! I would swear she was in her terrible twos with some of the tantrums she throws! There are reasons for the tantrums though, I cant make her sound like a big meany...its us big people that do it! Always picking on her!... Making her sit when she doesnt feel like it, wiping boogies from her nose, cleaning the trach area, cleaning her ears, looking at her teeth, give her a bath....there is always a reasons for tantrums and she calms down quiet easily, its funny. You can tell she knows what she is doing, as if she is letting you have an earful, which I suppose she really is :) She has the biggest smile and she is sneaky!...boy is she sneaky! I made her mad the other day wiping her little nose, she had her tantrum and then decided to ignore me...it was too funny. I kept trying to get her to look at me and she wouldnt, but she kept smiling like she thought it was funny. She amazes me every day! She is a holy cow 17 pounds!!!!! Is that amazing or what?... going from her tiny 3lbs to 17lbs...rather amazing :) she is only a little 24 1/2 inches so shes a short stumpy little turkey! Krista has a vocabulary that I swear wasnt there yesterday! She talks in senteces, remembers songs, tells stories...My babies are fascinating..growing every day, every minute! Kaylee is doing pretty good as far as health goes, she keeps getting little colds we arent sure why....so shes been on the vent 24/7 lately due to that. I think it has something to do with the ventilation in the house =\ She also has the sniffles right now, she has a runny or should I say frothy(because the texture ha) nose constantly!....She is getting big though, she loves her excersaucer and jumperoo, before she would only stand them for so long and then get tired and grumpy...now she enjoys them and has learned how strong her little legs are & she bounces!

Oh and she has started to roll over and has once!

teethers :-)

2009-05-26T17:28:00.000-07:00

I have no idea when the last time I was that I updated. Kaylee is a lovely 16lbs and 24 1/2 inches long =) she is rather chunky! She loves to sit and is a very active little munchkin! She has gotten her first tooth =) It came in on May 21st and I was more than just excited about it =) Krista is growing and I honestly think she grows like an inch everyday and also adds 3 words a day to her vocabulary. Things are good here at home, nursing is....going. Its tough finding night nurses, we live out in the country and a lot of the time its a far drive for people and I end up doing night shifts a lot which gets hard because I have to stay awake all day with my little rugrat when she gets up in the morning......but hopefully it gets better soon. I dont mind having slumber parties with Kaylee we have fun! Kaylee is my little buddy, its the sweetest thing and makes me feel amazing, Im her favorite person and I love every minute of it. Krista also is a favorite person of her =)

Right now I am scatter brained. I have night shift tonight but wanted to finally get some pics on here and let people know how out little life is going =)

& some pics ;)

2009-04-22T16:57:00.001-07:00

& I forgot to mention that my fatty is a whopping 15lbs and a short 23inches =) She is our little chicken nugget!
Next time Im going to make a slide show I am sure this is really annoying just posting 20+ all in a row =\ sorry!

I do hope you enjoy them all though!

Isnt she just something?

Kaylee & her rings =)

Krista.....gardening in....style haha.

She was looking for worms & she found one =)

She had to put him back in his home...

This was Kaylee how I found her at the hospital, turned so she was directly under her toys haha.

what a cutie =D

Krista loves to read to Kaylee...

Kaylee loves it too! She really pays attention and looks at the book ...

Its the sweetest thing =)

My love bunnies on Easter =)

Kaylee & the egg she found lol

piggy tails =)

Their Easter baskets!

coloring eggs the night before =)

Papa and the girls

Kaylee snuggling with her bunny blanket!! She is such an angel!

Ok thats all of this extremely long blog!

Time for an Update =)

2009-04-22T16:27:00.001-07:00

My oh my, where do I start? Kaylee is.... amazing. Its impossible to describe just how much I love her. We got home from the hospital March 4th 09, two days before her 1 year Bday =) So we were happy that she got to at least spend her Bday at home! It was a nice change since Kaylee has spent every holiday except 2 and now her bday in the hospital. Easter was one of those holidays it was very fun and I got lots of cute pics =)

Kaylee now has a tracheostomy, it is amazing! I thought it was going to be a devastating process to go through, but its been more than a miracle. I thought Kaylee was active before, but this new Kaylee that can breathe without an ounce of a problem, blows the roof off. =) I actually like the trach.... I am always sure she has a secure airway. Since before if her little nasal passage way was closing we had no idea until Kaylee was showing signs and symptoms of struggling to breathe. Which was much more scarier to me than changing a trach twice a week! Kaylee now has a J-tube for now and probably will for awhile, we still get to feed her by mouth she only tolerates at most....for right now around 4cc's. Which happens to be quiet the accomplishment for our little munckin =) We are so proud of her progress since she has been home. She is wanting to roll over and its hard since she is on a vent...but its absolutely adorable all the effort she puts into it =) We have 24/7 nursing which was a crazy thought giving up all your privacy at first but its been more of a blessing than anything, letting me get a good nights rest when I need it! It was hard at first finding nurses that I trust with my baby and we are still ...struggling with that. We have 4 nurses 2 night shift and 2 days shift in all and they rotate days and its the night shift nurses were having trouble finding.... well finding ones we like.

Krista turns 3 on the 27th....where does time go? Can anyone tell me that? She is too big for her little britches ha. She has a vocabulary I never thought was possible and she puts sentences together......daily...its rather amazing to me still and I think it always will be. It makes me sad to see her get to smart and independent.

Kaylee is getting a toothers!! I am SOO excited, its the cutest little thing in the world and I love it hah. I am so serious when I say this, and I know all moms say it but...... Kaylee IS THE cutest baby ever, and will be the cutest baby ever with a tooth haha. I love her so much, she laughs SO much these days and is just so happy. The teething phase for her hasnt been bad yet she has got a little rash around her mouth from drool and shes been sleeping much more than usual but thats it. She has had a couple days where you were NOT aloud to touch or even talk to her or she would have an absolute fit, but since those couple days which were last week sometime...shes been generally happy ...just sleeping more than usual =)

I love love love my life. This is the longest we have been home with Kaylee...she is staying so much more healthier with this trach in place... She did go to the hospital...she caught a little cold/caugh and it was too tough on her to handle it on her own and went in on the the 13th until the 16th of this month, but there was nothing wrong but a high white blood count so...it was ruled out as viral or a cold/caugh....and she is better now =) happy as can be!

This is my update I am sure I have forgotten something but this is the general out look. We are extremely busy Kaylee's little schedule is hectic these days!

Thank everyone for following Kaylee's story and for all the support we have gotten in these past months!

Happy oh happy

2009-02-07T10:19:00.001-08:00

Kaylee is on the road of recovery! Doing great =) I want to thank everyone that has said many prayers for us! She is slowly waking up, they are taking her through the steps of weening off the drugs, but it will be a few weeks before that ends. It is so nice to see her putting effort into waking up and trying to look around. She is still very groggy and you can tell she cant really focus, but just seeing her eyes open and blinking is such a treat! She wiggles and worms and flays around like our little Kaylee bug always used to =) It is so wonderful! I think our only worry now is preparing ourselves for what is to come (learning all about the trachea). But for now, we are happy and she is getting better so we are not going to complain about anything!!!

Here is a video clip that you can see Kaylee moving a little bit, she is so sweet!
OH and Kaylee is over 13lbs!!!! WOW =) but a lot of it is water weight still and in the video you can tell...or at least I can lol

The video isnt the greatest, its has terrible lighting but you get the idea =)

The coolest snowman EVER!

Kaylee on her 11th month birthday =) my big girl!

Stronger

2009-01-27T08:56:00.000-08:00

Kaylee seems to be doing much better. Her stats are staying good, they had to stitch up the hole in her neck that the infection caused. She has lost so much water weight, she is looking more and more like my little Kaylee each and everyday, her eyes...the whites of them were swollen, I forget what it is called but they are looking much better also. I just want to let everyone know how much I thank you for all the prayers they have helped her so much! Please keep praying & I will talk to you all soon. I hope that everyone is doing great!

Leslie

2009-01-21T13:54:00.000-08:00

Thank you all for the support and please keep praying for her. We are about to head to the hospital I cant wait until Thursday because I know I can stay up there Friday and through the weekend. I talked to the nurses many times today, one of my favorite nurses has had her the past couple days but she is very good at helping me understand everything. She has needed many blood transfusions 3 today. The blood cultures came back there is staff in her neck, they wont know exactly what kind until 72hours of culture, right now we just know its staff and the other bacteria the doctor said she had. Please pray she gets better.

I dont care what Kaylee needs to get better, she can take all the time in the world. I will sit at her bedside for another couple months if that is what it takes. I just need my bug to get better.

Thank you all.

frusterated.

2009-01-21T08:08:00.000-08:00

I'm not sure what to do right now. I am scared. Kaylee had her surgery got the trachea put in and the other procedures they were doing during this surgery. Everything went great, she came back and looked beautiful. I could see my babies whole face, once again. Well now we are having issues. The ties that hold her trachea in were cutting into her neck, me and my husband noted this and wanted them changed...her neck was raw and red....it looked awful and had an odor to it also. We asked if the ties could be changed and the nurse said they weren't aloud to change them the ENT would have to come take a look. Well he came and changed them the next morning I guess they decided to take a look after we mentioned it and realized we WERE NOT lying/exxagerating. Or they did know and was just waiting for the ENT to come anyhow....I am more than stressed. Yesterday they call me ( I am home since I have no one to watch Krista during the day and she is not aloud in the picu, i stay home except weekends when my husband doesn't work) well like I was saying they called me around 12 and 'Kaylee wasn't being herself, she was lethargic, her color wasn't right, her blood pressures were low, she had a fever' well it just gotten crazy. Well they said they think there is an infection were the trachea site it, the stoma site. The site is as big as a nickel and should be smaller than a pencil. The part that is as big as a nickel doesn't go all the way down to the trachea they said its only the skin that has 'eroded' down. I am mad, and angry because we have been complaining about her neck and it rubbing it, maybe this was inevitable, maybe it was going to happen. Right now I can only be mad. There is already a positive test for a bacteria I could never guess how to spell that when it is being treated causes inflammation most of the time, they have sent out blood cultures for her blood. They are hoping there isnt staff. The had to take her to the OR to put in a central line because they tried to put one in at bedside and poked many times and could not get it. Her veins are not accessible because her blood pressure is low, and when your blood pressure is low your veins get smaller. Well when they took her to the OR they got a line on her groin with three ports, well they lost 30cc's of blood approximately and so she needed a blood transfusion last night. She did good all night, it killed me to leave but we didn't have anyone to watch Krista in the morning, I couldn't sleep. Worried. I called this morning and she is needing another blood transfusion because her blood is not clotting? I have yet to learn about this. They ran a test on her blood to see what it was doing and how it was clotting and its not clotting well, so she got another blood transfusion. I am so scared. They talk about the bacteria that we know Kaylee has and say that they cant really know how it reacts to treatment, some do well, some are resistant, some get deathly ill. She is my baby. I am so mad, and think that really that's how I am trying to feel better, to put a blame where it doesn't belong. The only person I am really frustrated with is the ENT who did her surgery, It wasn't her usual ENT who I wanted to do the job. It was discussed with her ENT though so I felt confident that this doctor would be good. I feel like he should have paid attention more, been more thorough. There are many little things that make me feel this way. All the different things I have observed. I don't know....

I love her and, I'm scared. That's just it. I just needed to vent.

Surgery

2009-01-13T18:28:00.000-08:00

Just a quik update, I think her surgery is going to be this Thursday. I said I would keep everyone posted and I really wanted to get the word out so more people can be praying for her, so please pray for Kaylee and a fast healthy recovery! THANK YOU ALL SO MUCH!

Results Are In...

2009-01-10T18:46:00.000-08:00

Kaylee is still on the ventilator. Her lungs are at base line but she is not weening off the vent. There was a misunderstanding between us and the nurses, and her lungs have been clear for some time now. We would ask how they look and they assumed we knew they were already better and said "the same" or "a little better today" so we thought they weren't really clearing up. Well its great that her lungs are clear, but not such an optimistic thing from the doctors point of view. They are glad the lungs look good don't get me wrong, but her weening should be going better with that being the case. Anytime they try to ween the rate or the O2 level, her CO2 level goes up, it doesn't help that she has to be sedated all the time either. They have to keep her comfortable so she isn't trying to pull out the tube or gagging. So she wants to rely on the vent to breathe for her more than she wants to breathe herself. She has an extremely small airway, and its hard to intubate her so they don't want to try and extubate her again and see how she does because if her CO2 starts going up and they have trouble intubating her AGAIN, it could just cause more damage to her airway and make this all much harder on her. When they do try and ween her off the sedation's and let her breathe she does great, as I said in the last entry she got to be extubated once and it went well but slowly her stats starting going down hill. Her CO2 went up. With her airway being so small, and her secretions build up and she doesn't swallow it like she normally should do, it builds up and it makes it harder for her to breathe or she breathes it into her lungs....aspirates. There are plenty more things that add up to the thoughts that the doctors shared with us this past week, which is possibly that Kaylee may benefit from having a tracheostomy. It has been a hard week and its been a lot to think about, Kaylee has been through so much, and its just...time for her to have a break and get to be a happy baby. But maybe that's what this will do. After a lot of thought me and my husband decided to have Dr. Little consulted to take a look at Kaylee and evaluate her from his point of view (he's her ENT) and see if he thinks she is a candidate for this option. This wont be until Monday if he is available, and if this is the route he thinks we should take its going to be a long road for us. Another week or two before surgery, maybe more-maybe less? Then for a week after surgery she has to be kept sedated and comfortable for the healing process, and then they have to ween her off all the drugs shes on....which they say takes the same amount of time that they were on sedation's....which has been since Dec 23rd so...that's like a month if surgery isn't for a couple weeks, actually over a month...which right now we could think Kaylee may be in the hospital for her first birthday.... So its going to be a long road but I have faith that its going to be whats best for Kaylee. I am dreading it but at the same time I am almost jumping for joy thinking about having my little bug back. Its been so long since Ive got to see her, as my active little bug =) I cant wait!

Thank you everyone that has left such uplifting comments! It is always so nice to get on here and have them =) Thank you and please everyone keep praying for Kaylee, she is very thankful for all of you! We hope everyone's familys are doing well and are happy!

Happy 2009.

2009-01-02T08:43:00.000-08:00

When I read back it seems most of my posts are when Kaylee is either in the hospital or just coming home. I hate that. It has been a tough 2008 and 2009 isn't starting out with a boom either. Kaylee was admitted to the PICU December 23rd. I brought her to the doctor because she was starting to have stronger retractions when she was breathing and she was very...lethargic. Not playing or wanting to do anything, really. I was getting concerned with the sleeping more than the breathing because she occasionally has breathing problems. She was just so lifeless it seemed like. Not my little Kaylee bug. When we got to the doctor they sent us straight to the ER because she was really starting to struggle with breathing once at the doctors, it was insane how rapidly worse she was getting. She was needing about 4 liters of O2 on the way to the ER (which is only across the street from her doctors office). She was pinker than pink though so it scared me, I didn't understand. Her pulsOx at home wasn't working I think because her feet are SO fat, it just wasn't picking up anywhere I put it many different spots and sometimes it would pick up and it would go up to like 94 and the fact that she was pink also made me feel she was ok. So when at the doctors she was reading 70's with like 2-3 liters of O2 really worried me. The doctor called the ER to let them know she was coming, they took us straight back. They did an x-ray and some blood test and Kaylee was getting SO much worse, just working so much harder to breathe and not aware at all. Well she had some pneumonia in her right lung, about the size of a golf ball. It was also hazy so at the time it wasn't really significant. Around 6 we were being taken up to the PICU and me and my little sister had to wait outside the PICU for them to set her up and at that time she had 7 liters of O2 blowing in her face to keep her stats up. They had poked 6 times in the ER trying to get IV access, they did get it once but it failed after one set of antibiotic ran its course. So once in the PICU they were going to try and get that IV in and get her situated. Me and my sister went to get some food because they said it would be an hour or so, and we hadn't ate since breakfast so we went to get food and I thought Id stop and get Kaylee some stuff from Kmart which was right down the road. When we got back, things took a turn for the worse. Kaylee was....struggling terribly to breathe, she was rolling her eyes and just....jerking around. I cried and cried, what else can you do? As a mom your suppose to be the one who protects your child and keeps them safe and at moments like that you can do nothing to help, I felt so useless... I wanted to just pick her up and hold her and try and make her better, I knew that wouldnt do anything though. I can say Kaylee is my main motivation in being a doctor. I want to be able to help her when shes sick, to get the satisfaction I would feel as a mother when I am the one that diagnoses and helps her on her journey to getting better. Its so frustrating not being able to do anything at all. Kaylee's gases were all off....her carbon dioxide was extremely high which if that gets to high your body will just shut down. Her carbon dioxide level was at 86 and should be between 40-50. That was the scariest part for me, so they had to intubate her. Let the ventilator breathe for her. Her x-ray that night in the PICU her right lung was completely covered with pneumonia and her left was all blotchy. Kaylee has chronic lung disease so its extremely easy for her to get any type of respiratory infection and its so much harder for her to get better. So not only was her first Christmas in the PICU completely unconscious so was her first New Year. For the New Year she was off of the ventilator, she was taken off the vent on the 30Th because her carbon dioxide was staying low and her stats were staying high when they let her initiate the breathes on her own, so they felt she was ok to come off but she was still being some what sedated to help ween her off the drugs she was getting while on the vent. Well since shes been off she has had high and low CO2 levels. Well last night it got up to 90 and at 2am went down to 60 so we thought, 'ok shes going to ride it out' well this morning the CO2 level got up to 117 and she got put back on the vent. I am rather depressed. I haven't seen Kaylee aware or playing.....or anything for that matter, I actually am having to just be happy when shes mad and flaying around, showing me shes still in there fighting for us. Her lungs are getting better very very slowly. If you compare the x-rays day by day you wont be able to tell anything is better. If you compare them from today to when she came in you can see the little difference. I just hope that all who read my post will pray for Kaylee, pray she gets better soon. We need her home. I need to see her pretty little smile, and see her eating them scrumptious little fingers. I miss my little bug.....

I am sorry most of my entrys are about more of the sad things. I think I use this blog to help me relieve my stress. I know people will understand me on here. I know that people are going through similar things....

Thank you all
Pray for Kaylee.
As for everyone else I hope and pray you all had a good Christmas and a Happy New Year.
God Bless you all.

Kaylee's First Christmas

New Years Eve Happy New Year, Baby

& of course, the Kaylee I miss more than anything.

Home Again..=]

2008-12-12T12:13:00.000-08:00

I dont think I will ever be able to express just how much I love Nate. We finally got home from the hospital last night and so of course I stayed up picking up things around the house trying to tidy up a bit since we hadnt been home in a week, which is a whole other story. He has his hunt at Chuck Swan which is a huge acreage for hunting and him and his dad went and they are going tomorrow too. He woke up early this morning and not only did he tell me I was beautiful ...need I tell you I was asleep when he told me this =] and he tried helping me clean, he did some dishes and picked up a little more.... I thought it was too sweet. To me this is a lot, some people might not think so...but for him it was really nice. I love him.

Kaylee went to the hospital this last Saturday, she was running high fevers for a couple days but we thought it was probably viral and would run its course. Well needless to say it wasnt a virus, the fevers just kept getting higher and she got crankier. Her fever was 104.2 when we left the house to head for the hospital, which was really high comparing it to the 102.3 it was an hour before then. She was admitted and we then stayed a nice week, as usual. Everything came back negative or no growth (meaning no growth for bacteria/viruses ect.) so it was like a medical mystery, we just knew she had really high fevers and her WBC(white blood count) was really high, it was in the 42,000 at its highest peak and it should be at like 10,000...and for those of you that might not know, your white blood cells fight off infections and sickness's. So we had no idea why her blood was doing this and where the fevers where coming from. Well about 3 days there some growth for strep/pneumonia came back in her blood but it was such a small amount they wanted to do another blood culture to see if it would show up again since she had been getting antibiotic shots. Nothing came back and her white count was slowly going down soooo it was ruled out that it was a starting of an pnuemonia but we just got there before the pnuemonia could grow! So I am happy to say that Kaylee bug is happy as can be now, and getting SO big, she is a whopping ALMOST 11lbs =] I love my little angel and each and everyday is a blessing with her. She is so much like a baby now, and I am sure that sounds funny to many but to me its a lot. Shes learning a lot and playing,laughing, trying to sit, rolling and she babbles at me!...shes awake like 75% of the day, she just swells my heart with a big happy smile.

Krista is more than happy to be home! No more hospital food, no more ramen noodles or cheese dogs either! I know me and her wont be eating them for awhile lol well me at least. Here we are at home, shes back in her princess dresses watching her barbie movies. It feels great to be home, oh and Krista knows how to say "JA-Nnotte" lol its too cute. She says her last name.
thats the updates for now, I go see the nuerologist on the 22nd and I am looking forward to that I have a few questions. I cant believe its been like 7months since I had a....brain tumor! I still just cant believe I has a tumor period.

I hope everyone is doing good & if you read this I hope you enjoyed my update!

The shedding baby!

2008-11-25T12:31:00.000-08:00

Kaylee is shedding like crazy! Her hair is thinning out SO much(& when I say thinning I mean that when I wash it or even run my fingers through it globs of hair fall out!!!)! Or even where she lays when I pick her up there is tons of hair everyday all day! I know this happens with babies but I didnt think it would happen with Kaylee, has this happened with anyone else? Im curious! Kaylee also has a huge bald spot on the back of her head... we recently visited the hospital for another week recently. She had pneumonia again! & was having trouble breathing, needing more oxygen than normal.....I hope and pray they arent missing or overlooking anything. I cant wait to at least be a RN so I can know myself that we have did all that we can for Kaylee and that she just with bad luck keeps getting sick! We keep her inside and dont take her anywhere unless its an appointment and I try not to schedule any appointments unelss they are important including now that its winter! She is doing great now and is happy as can be! She is enjoying sitting more now, she got so used to laying all the time since we have been in the hospital so much lately....the bald spot on the back of her head went from a quarter size to bigger than an egg =( it depresses me because I love her hair sooo much and now its thinning out too! I am not sure if its because all the medicines shes on or maybe just her growing up a little bit more =] She is getting SO heavy to me(well for her), its so exciting I would say she could possibly in the 10 range now which is such a milestone for her! My little angel is being SO sweet today wanting to be held and wanting to sit up and play&laugh & her big sister is being fantastic also! I hope this winter is a good one for Kaylee and that the last time we was in the hospital is exactly that....the last time.

Just thought I would do a small update & hope everyone is doing great! Have a Happy Thanksgiving to everyone!

Wordless Wednesday

2008-11-12T12:03:00.000-08:00

I will never forget the day our little bug was born. Kaylee Jade was born March 6th 2008 at Fort Sanders Hospital. She was a whopping 3lbs and 11oz and a short 15inches long! She was 1month early. Her being born was fast & simple, unlike the life she has today. I went in to labor all on my own and when I finally went complaining to the nurse (I was on bed rest) I was dilated 8 cm. I started to cry, not because I was in pain...but because it was much to early for Kaylee to come, considering I was on bed rest because she was not growing, she was in the 3lb range on an ultrasound 2 weeks before I delivered & I had got ultrasounds everday while I was on bedrest to see her activity. They broke my water once they had me in a birthing suite & I was all set up and Kaylee Jade was here an hour later. She was born with choanal atresia bilaterally. Which means she did not have nasal passageways in either nares & they didnt know this...so they didnt understand why she wasnt breathing. If they held her mouth open she was fine breathing but as soon as they let go there she was, not breathing again. How traumatic it is for the day that you are suppose to be so happy, go so wrong and be such a panic. I didnt get to hold Kaylee when she was born, none of us did. As soon as she was born doctors were there to work on her & tranfser her to the childrens hospital. We couldnt go see her for 3-4 hours after she got there because they had to get her situated. Once we did go to see her it was beautiful. Kaylee was....so unique. She was so different than Krista when Krista was born. She had TONS of hair and she was so tiny, and that eye brow of hers was so dominant! She had a tiny little nose, and thin lips! I thought she was beautiful, I just didnt understand, she didnt look like me, she didnt look like Nate.....she was BEAUTIFUL though & thats all that mattered. She was so sassy right from the start, always pulling on everything, and making trouble for the nurses =] We got to hold her the night she was born which was a very aww moment, it was only for maybe 20minutes between me and my husband holding her but those 20 minutes were magical. My little angel, as tough as can be, right from the beginning. These are moments I think we all live for. I think some babies are tougher than us parents could ever be! Well I hope you all enjoy my first wordless Wednesday, I am not sure if this is how you are suppose to do them, or what they are suppose to be about, but here it is! I hope you enjoy!

Question Answers - About Me

2008-11-09T10:25:00.000-08:00

I stole these from Misty and if I knew how to link her I would, but I havent figured out how to do all this yet. I am learning, and trying to figure out all these CdLS challenges and what days thye are on so I can join in! I thought I would answer these question so that people can get to know me better =]

1. Where is your cell phone? Hmm, my husband went hunting this morning so probably in his pants from earlier.

2. Where is your significant other? He is walking around the house talking on the phone

3. Your hair color? I dye it light blonde, but its naturally a sandy/ash blonde

4. Your Mother? A very dear friend to me.

5. Your Father? I have a great step-father.

6. Your favorite thing? Showers, I get my quiet time. When I get to take shower alone anyhow =) (Krista always has to get in with me)

7. Your dream last night? I dont recall any dreams =/

8. Your dream goal? To be done with nursing school & start med school becoming a doctor!

9. The room you're in? In the Living Room

10. Your hobby? Being a mom, a wife, I love taking pics of my family!

11. Your fear? Something happening to me (I had brain surgery 6months ago) & I am always scared that something will happen to me & it scares me! I also have big fears for my kids of course, I pray they stay healthy their entire lives!

12. Where do you want to be in 6 years? I hope Im on my way to being a doctor! Working in the East Tennessee Childrens hospital!

13. Where were you last night? Here at home, talking with my sister and my friend =)

14. What you are not? A liar.

15. One of your wish list items? Oh there are so many, but I would love for Kaylee to not have such a tough life!

16. Where you grew up? I grew up in FL & I miss all my family & friends!

17. The last thing you did? I gave little miss Kaylee a bath, lotioned her up got her an outfit on, combed her hair and put a bow in it =)

18. What are you wearing? I have a grey t-shirt on, jeans, and black socks and a black belt ...

19. Your TV? It is just the average TV & that works fine for us!

20. Your Pet? I dont have any, but I want a chocolate lab eventually!

21. Your computer? I have an HP & I love it!

22. Your Mood? Im in a good mood, hungry though, time for lunch!

23. Missing someone? Too many to name!

24. Your car? Well my family is a little country family, so we love our trucks, even though I cant wait to get a car now that I have two little girls.... but I have a Ford Ranger, and my husband has a Chevy 2500HD

25. Something you're not wearing? Nail polish

26. Favorite Store? Even though I dont get to get there to often I do love target, they have the cutest clothes for kids! Then there is wal-mart since that is closest to my home, ha.

27. Your summer? Wow, it was busy and hectic, but we made it through!

28. Love someone? I love many, not just one.

29. Your favorite color? Lavender yellow & purple.

30. When was the last time you laughed? When Nate was aggrivating me earlier today ..... he thinks hes funny ;]

31. When was the last time you cried? When Kaylee was in the hospital. It is hard to watch your baby go through so much!

Well here is some questions answered about me, I hope you all enjoy reading them & I look forward to seeing everyone elses answers!

Finally Home

2008-11-05T10:50:00.000-08:00

After being in the hospital since the 22nd of October, we are finally home! Our little Kaylee bug had a big adventure which consisted of, needles, blood, IVs, spinal tap, x-rays, urine samples, no food, 100 nurses and of course all her doctors. We went to the hospital after she had been sick for about a month with cold/cough/fever/crankiness....we had made many doctor trips & visits to the ER before this admintance. She got an x-ray on the 22nd like she had so many other times that month but this time it came back with pneumonia =/ They also wanted to do a spinal tap to make sure her spinal fluids were fine since she had been sick for so long and the symptoms were so easy to be many different illness's. The spinal tap was clean, Thank you God! We were admitted and put on the 2nd floor, they started her on antibiotics through the IV(which was a scalp IV) and they started some breathing treatments. The next day the GI doctor came to see her and we concluded that since her Nissen came un-done that this pneumonia was more thank likely from aspirating & that putting her on a lower rate until surgery had failed. The GI doctor did not want her eating because he was afriad she may aspirate and make matters worse, so we were looking into getting her a G-Jtube so she could start feeds again. Well they dont have a G-Jtube in Kaylee's size, she has a 12French and the smallest they come in is 16. SO then the GI doctors tried to rig up some tubes and make a G-Jtube but it all failed. Every attempt to get a G-Jtube in failed. So in the mean time Kaylee would not eat. To fast forward things Kaylee didnt eat for 4 days before they put her on pedialyte 2MLs an hour, which was....basically nothing. Another couple days went by and then it was the night before her surgery and her IV came out, she had this huge bubble on her forehead where it had been trying to pump the IV fluids in her. So it was either find a new IV location on her or feed her. We insisted on trying to feed her first, keep her elevated and watch closely. They had her on Zantac the medicine that helps keep food down so why not? So they talked to the doctors then agreed to try this, but they had to get her from 2MLs to 16MLs to equal out to the fluids that the IV was giving her, the amount she needed. So it went 2MLs, 4MLs, 8MLs, 12MLs, and finally 16MLs over so many hours. Kaylee did fine with the feedings. Her surgery went great, they had to re-do the Nissen and put a whole new g-tube in because her other spot leaked like crazy because the lining of her stomach was coming out &.....long story short...it wont fix you have to re-do the hole. We spent 3 days in the PICU and went to the 4th floor and a couple more days went by and we got to come home!!! Kaylee so far is doing great, still giving her breathing treatments here at home, and she is on O2 at night.

To update the family now, life is rough. The economy is unpleasant and I can only pray that this new president really changes the economy for the better. We are happy as a family it just seems as though so many problems keep arising.

Halloween was super fun. Krista was Arora also known as Sleeping Beauty and it was so fun to watch her trick or treat this year. She caught on fast and was so excited to go to each door and then she got wore out and wanted to stop between each house to eat some candy =] it was fun. Kaylee was in the PICU for Halloween but after taking Krista trick-or-treating me and Nate went back up there and put Kaylee in her little skeleton onzie, it was too cute.

I cant even express how happy I am to be home, Kaylee is laughing and smiling & is starting to realize we are home also. We didnt get to hold her much in the hospital she was cranky when we tried or she had so many things hooked up to her it was just hard trying to get her comfortable without pulling on this IV or that tube or her oxygen...I love being home. I love how she makes strawberries and she loves her sister it seems more and more each day. Krista can make Kaylee laugh no matter what she does, its a beautiful thing to watch.

OH and they shaved more of her head, she officialy has a mullet!

All the pics are in reverse on how the story went, so hope it doesnt confuse you!

Baby's First Halloween

My Little Skeleton =]

Krista was my Princess

My Love & Krista

Kaylee's super mullet, this was after surgery in the PICU

Before surgery, Krista loving on Kaylee

Big smile from the baby

My babies hands

Kaylee smiling with Krista

Kaylee holding Daddy's hand

IV in the forehead =(

My Favorite, her hands

I only wished I had those lashes

I dont know what she was doing, but she was not pouting..it was funny & her hiney was hanging out

Big Yawn =O)

No more pics mom, Please!

baby loving

2008-10-18T19:52:00.000-07:00

Kaylee is planned for another surgery for her Nissen Fundoplication. I hope more than anything that it possibly holds this time. How grand it would be to never have to sit in the ETCH waiting room on the 6th floor again. Kaylee loves her hands, cant seem to keep them out of her mouth. & lately she has been amused with looking at her feet when we hold her in a sitting position. She amazes me. Krista is a huge helper, she loves her little sister and tries to protect her from everything, including them mean old doctors :) She yells no to them and puts her hand over Kaylee, its so like her. She is going to be a great big sister, she already is.
Kaylee has been sick latley, coughing, gagging, extremely milky snot, she got 3 antibiotic shots this past week, wed-thurs-fri, she seems to be much better. She was extremely irratable and angry. Didnt want to be held or try and eat, hated therapy and wasnt sleeping well. She is now my little angel who is laughing and smiling and making strawberries at me =)& of course sleeping SO much better! I am so blessed. I love the strawberries she makes(the noise with her mouth as if making a fart noise) I feel like shes playing with me, I do it back to her and so does big sister and of course she does it back. Krista loves it, she thinks its a game.
Kaylee gets the synagis shot this Monday, it will be her first of many I assume since they are seasonal shots. I think thats all for now.

My Family

2008-09-20T20:12:00.000-07:00

My name is Leslie and I am married to the most perfect man, his name is Nathaniel Jannotte. We were made for each other ♥ I thank God everyday for him. He is a firefighter and works plumbing/construction. I am in college becoming an RN. I am currently a stay at home mom. I love it. We together have two daughters. Krista LeAnna who just turned 2 April 27th 08. She is sassy and smart, she is the boss and loves to take care of her little sister! Krista loves playing outside and getting dirty but also love to play with her barbies and babydolls. We brought Kaylee Jade into the world on March 6th 08, she was premature by a month. She has Cornelia de Lange Syndrome. She will be small longer than normal but who can complain :) Kaylee is very picky and precise about how she wants things, I never knew a baby so small could be so spoiled! Kaylee will be 7months old Oct 6th and she is 8lbs+. I love my babies they are both very special♥ I welcome anyone to follow along on my blog, I have often felt alone in this journey and then discovered this wonderful site and how many parents are so the same as me!

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