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    And thats how Kailey says Hello! A little update before I have to go chase the little booger head down. She is now crawling, on her hands and knees and she is VERY fast. She is pulling herself up but doesn't have any balance yet. We got the okay to switch to whole milk from her pedi but they want to see what the NICU clinic says in a few weeks. she still has her trach and is still on oxygen, although she takes her oxygen off multiple times during the day and just goes about her business playing. She is now almost 16 month's old (12 adjusted) and weighs 15lbs. .......now i must go fetch her and attach her back to her oxygen.

update and bday pictures

      so our last ENT visit didnt go well at all. The scar tissue we had removed before grew back and brought some friends :( Her airway is very reactive and they have no clue why...as soon as they get the scope in she starts swelling. now she has to see GI to see if they can figure it out.
      She is gaining weight a lot better now, she's up to 14lbs! She has finally started eating stage 2 foods like a champ. our speech therapist thinks she may have some sensory disorders b/c if any textured food gets in her mouth she will make herself throw up to get it out. She is still not crawling, but still trying. She can hold herself up on her arms now which is great improvement...and she can bring her knees in and push her butt up in the air....its just not clicking for her to do them at the same time lol. she has a itty bitty front tooth trying to come in finally. From what i've noticed with her and what i've read she is doomed to have horrible teeth :(

\I made her Birthday cake...she played in it for awhile then got it in her nose and started crying. I'm not sure how people do the 1 year smash cake while not at home...she was freaking out and had icing EVERYWHERE, she had to have a bath right away. But it was fun :)

   

Almost a year old...

so i just realized i never post on here anymore. theres just way to much going on in our lives to keep track of everything. I usually never have any time to actually sit at my laptop and do this and i couldn't remember my username/password to do it from my phone. Kailey is doing well. She is 14lbs and 25". She is now sitting by herself for short periods of time. Her arms are not very strong so she can't hold herself up long enough to crawl but we are working on it. She is still on oxygen but her baseline is now 1/8 of a liter and we are still weaning as tolerated. The swelling in her airway has gone down quite a bit, now ENT is focusing on getting rid of scar tissue that is sitting right above her trach and blocking most of her airway. They keep trying to get it out when she has her scopes but she is still to little for them to get it.

     Her 1st birthday is coming up. we can't have a party for her due to flu season, so we will just have a cake and presents at home just the 3 of us. I can't believe it, she's going to be 1. where has the time gone? she definitaly doesn't look to be a year old, people are usually amazed when they first see her. "the little newborn is holding herself up very well" is usually the reaction we get lol. yes she's little, but she doesn't let it get her down. Daddy and I decided that she's not allowed to have excuses anymore. She has to continue to be strong and not use her trach or being premature as an excuse not to do things.

      This winter has been a little tough on us, Kailey loves being outside and going places but since its flu season we stay in as much as possible. She gets so excited when we go to the doctor because she actually gets to go somewhere. Usually if we have to go to the doctor we plan all of our errands for that day. so we won't have to get her back out of the house. I had our meeting with first steps (program for free therapy for premature infants that need it) the other day and I was asked "who is your support system"...as in who i leave Kailey with. HA! my baby goes to no one and wont for a long long time. I don't like other people suctioning her, or touching around her trach at all for any reason. She doesn't eat well for anyone except me. no one else has trained themselves to her sounds. I wake up at night every time she needs suctioned. I wake up when i hear her oxygen tube hit the floor. I wake up when i hear the way her secretions make her sound when she laughs or crys. I wake up way before her monitor beeps when something is wrong. She needs ME at all times. I may be tired all the time, but i've gotten use to only having a couple hours of sleep at night then staying up all day. Its our life now and i wouldn't change it for anything.

    ExhaustedMTB from WTE~ thank you so much for sending Kailey birthday money! you are so sweet! she is going to the doctor on the 15th and this when i will be taking her birthday shopping! (and maybe to get her ears pierced havent decided if i'm brave enough yet) Hopefully i'll remember to get back on here and post pictures from her birthday!

   In other news...I have decided we could handle another kid. So we are going to start TTC again! Hopefully it won't take 7 years this time! Happy HEALTHY Magic Baby dust to me!

My instagram name has changed.. it is now Krisjustic

9 months old...

I Haven't posted in awhile, haven't really had anything at all to post about...until now. Kailey is now 9 months old/ 5 months adjusted. She is a little behind. She isn't trying to crawl, won't reach for things or people and isn't very good at rolling. But she has been supporting her weight with her legs for a few months now. Her legs are very strong, she can go from sitting to standing if you hold her hands to provide balance. She has been amazing her PT since she started getting services. She is still on oxygen 24/7 but we have been able to ween her down to 1/8 of a liter. She is now taking 5oz of formula every 3hrs and we are still working on solids, although she does love oreos. She is the biggest strawberry shortcake fan ever, she would play in her exersaucer all day watching strawberry if i'd let her. She just had her first ENT office visit in Cinci the other day. The swelling in her airway has started to go down! This is the first step to getting rid of her trach!!! In about a week she has Nicu grad appointment, i am not looking forward to it at all. Every time we go they spend 3 mins with her then tell me that she has everything wrong with her, her muscles are weak and she has a floppy neck for example. This kid stood up in her incubator while we were holding her breathing tube inplace when she was 24/25 weeks gestational age, how can someone say she has weak muscles? I'm also not looking forward to them telling me I shouldnt be feeding her what i feed her, we had to switch her formula to similac allem b/c she wasnt tolerating neosure anymore. After the switch i called to let them know that she had liquid stools all day long and it was making a horrible rash on her bottom and all they could tell me was "if shes not tolerating it then we suggest you take her to cinci".....SERIOUSLY? why would i have to take her to cinci for that? So i started putting oatmeal in every bottle and started her on baby food (she only eats about an ounce of baby food a day) on my own. They also do not approve of exersaucers or walkers, which we use almost daily. I do not have the same views on things that they do so I'd prefer not have her seen there. I've already requested to start being seen at the nicu clinic in Hazard Ky since its about 1.5hrs closer to us. We do have to keep her appointment coming up in lexington just so she can see the speach therapist, which we are excited about. Get to try out the speaking valve again, YAY! I do not have any pictures at the moment, but I do add some to instagram every now and then....

update

Kailey is now 6 months old, still home and doing well. we had a few rough spells of going to the er via ambulance and being admitted overnight 2 hours away (due to her rapid growth and her trach being to short). her last ML&B showed the swelling in her airway hasn't went down any so she is no longer allowed to have her feeding tube. The first week without her feeding tube was rough, but we ran out of our breastmilk reserve and had to switch her to formula and she is doing very well. We haven't been able to get her to increase the amount she takes during her feeds, so she's still eating 60-70ml every 3 hours which is just a little over 2oz. I know she should be drinking a lot more than that but she is still gaining weight very well. She will soon have Physical therapy and Speech Therapy coming out to see her a few times a month, we constantly have Dr appointments ranging from Pikeville KY to Cincinnati OH and a few places in between. Pretty sure this kid is going to be the death of me....

Home!

We came home Monday June 18th, it has been a rough week with not much sleep but it's starting to get easier. I must admit False alarms are about to drive me crazy. Kailey had a horrible cough the other day and kept desatting so we took her to get checked out. The doctor wouldn't do anything for her, he said he was afraid. So he shipped her to UK. We stayed there for a good 5 hours just for them to tell us she is plugging (we already knew that, we want to know why and if there's something wrong) and they sent her home. As soon as we got her home she stopped breathing. My husband and I had to bag her then so an emergency trach change. She was fine and playing afterwards. Fast forward about 4 hours, she desatted and the alarm woke us up. She had stopped breathing again, we bagged her and once again did a emergency trach change. I'm so glad we remembered everything we were taught at UK and Cincinnati, not to sure what would have happened if they didn't prepare us. We are still looking for a nurse, although I don't really think we need one, if we find one she's going to be very bored b/c im very greedy with Kailey. Anyone know a RN that would like to get paid to sit around watching tv or whatever for 10 hours a day and watch a baby for 2 hours while I nap?

2 more days...

Until we go home!!! Monday's the day! We finally got everything we need for her thanks to friends/family and a huge donation from MIRACLE BABIES! Kailey is taking a lot more from her bottle these days, around 75% I think. Which is awesome and I'm hoping she won't need her NG to much longer. Our trip home is going to be horrid, it's a 4-5 hour drive and they want us to stop every hour to get Kai out of the carset for a rest. Kailey's two cousins came for a visit today with Barrys parets but they are to young to come in the Nicu so we went to the RMH to play at the playground...