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...

Discharge Date!

We had our family meeting today. Looks like we will finally be going home next week a day or two after her bronc! The discharge coordinator is trying to find us a LPN or RN to stay with Kailey at home for 12 hours a day but isn't having much luck because we live in such a rural area. Barry and I can take turns napping if thats what it takes to get her home. We will be doing all of her followup appointments at UK (thank god) except Ent.  Kailey will be enrolled in the first steps program, which i think is physical therapy and speech therapy (not to sure what else)... She still isn't taking much from her bottle, but speech therapy here has watched me feed her and saw how comfortable we both are and know that i follow her cues. Speaking of which, she has a swallow study tomorrow, they think she is aspirating some and want to get that under control before she goes home (hopefully without a Gtube)...UGH we have about a week to get things together for her to go home, so little time... so much to do

First bottle!!

Kailey had her first bottle and she took 22ml without a problem! I'm so excited! She's a big girl now, she even got a big girl crib at the hospital.

Update

Kai is doing very well! She is off the ventilator and on a little bit of oxygen. Monday ENT will be changing her trach then one day next week speech therapy is going to see what she can do with a bottle! And she will be able to get out of the bed to cuddle and swing! She is such a happy baby nowadays!

Surgery

Kai is in surgery at the moment, it's suppose to take around 2 hours. Hopefully they get her sedated before she does something crazy again. As we were walking into the hospital this morning we get a phone call. Kailey self extubated again. This little booger does things on her terms and no one else's.

Tuesday..

Surgery is set for tuesday morning, she will need 5 days to recover then she will good as new. We will actually get to hold her all the time and she can start learning how to eat. We should be able to find out within a week or so if she is going to need the home ventilator or not, which will determine how long we will be stuck in the hospital.

Getting ready for a trach...

Kaileys upper airway is abnormal from having the ET tube in so long and being reintubated so often. Don't know when the surgery will be yet, still waiting for ENT to talk to us. She may or may not need the ventilator after she heals from the surgery but if she does our stay is going to be muchlonger. She will have to double her weight before she can be put on the home ventilator. They said they have a room here that is kind of set up like an apartment that we would be able to stay in while we learn to care for her trach, and there is lots and lots of learning.

Update

Anesthesia just called to get consent, so hopefully today they will actually be checking her airway and lungs instead of letting her starve again for no reason. Kailey has not wore clothes since she has been here b/c she stays on the warm side, eventhough she's in an open bed! She's such a tiny big girl now. We got into the RMH, IT'S HUGE! omg ive got lost 5 times already. Everyone is telling us not to walk to/from the hospital after dark, so we've been coming back to RMH at 7ish and it sucks. I'm so use to being in the nursery until 10ish. There's a lot that's different here and it's taking time to get use to. We have to sign in and out anytime we leave the floor, which is a little insane. But they never have to call to see if it's okay for you to go back b/c it's always okay. Apparently there isn't a time we are not allowed to be in the nursery (unless there's a situation with a baby). But the nursery is huge, I can't even see the back of the nursery to tell how many babies are in there. They have a child life specialist that does activities with the parents and brings learning toys for the babies, yesterday we decorated our own onesies.

Prayers for the Lakes

Everyone please keep our friends from the Lexington RMH in your prayers, they just lost their precious baby Alyssa. My heart is breaking for them. Jason and Amy, i'm so sorry for your loss. We fell in love with her the day they brought her to nursery 1 and I wish we could be there for you. You will always be in our prayers.

Cinci

So Cincinnati children's hospital is huge and the parking garage is confusing. I can find my way from the car to the nursery but that's about it. Kailey is doing good, shes starting to get aggravated from being bundled so much but the couple times they unbundled her she went straight for the tube and started pulling. So they are going to just let her hang out until the end of the week when they can do the bronchoscope then they will figure out what the plan is. We will be sleeping in the car ad getting a meal voucher everyday until we can get into the Ronald McDonald house. I can already tell it's going to be an awesome week. *sigh*

Monday

Is the big transfer day. Cincinnati is sending their transport people to get Kailey....sooooo much to do before Monday, but I've almost got everything packed up. We have accumulated so much stuff in the 3 months we've been here, really wish we didn't keep forgetting to get people to take the stuff we don't need/use back with them.

Failed

Got a phone call at 2:30 am...Kailey self extubated so they tried her off the ventilator, she didn't make it 15 mins before she had to be reintubated. So we are going to get the paper work started today to send her to Cincinnati and she will stay there until she can either go home or be transferred to pikeville.

Change of plans

We will be extubating tomorrow and if she fails we will be in cincinnati as soon as possible. The doctor still doesn't have much faith in her being able to stay off the ventilator so I guess it's time to start packing just incase.

good luck Zoe!

Kailey's little buddy Zoe got to go home today! I hate that we won't get to see them anymore but I'm so excited they finally got to go home.

Preparing for Cincinnati...

A week of steroids...

Kailey is starting a week of steroids today, and we will be having a care conference with her doctor on Wednesday. Not sure what day we will try to extubate her but if she fails she will be shipped to Cincinnati. The ENT's here are not comfortable working on infants so all they will do is a bronchoscope (which they have done) and put in a trach. We know that her vocal cords are swelling so if that is the only problem Cincinnati ENTs should be able to fix it and if not at least we know we have tried everything before traching her.

Once again...

Kailey has failed extubation. They have been lowering her ventilator settings over the last week or so and got her pressure/rate/o2 down to the lowest they have ever been. She was extubated at 7:30 am on 4-26 (her 3 monthaversary and was doing awesome up until 6:00pm. They said she was working to hard to breath and kept dropping her SATS. BUT her heart rate didn't drop this time which I would think is still an improvement eventhough she still had to be re-intubated. We can't sleep, so its 3am and I'm writing this and Barry is reading a comic book. We MUST be at the hospital for rounds tomorrow to see what the plan is going to be this time. They are already talking about having a care conference to discuss a trach. So we have been researching trying to figure things out. I really don't want her to have to get a trach unless it's the only option....
On a brighter note, I held Kailey today to calm her down and get her to stop holding her breath...look how pretty...

Weight gain...

Kailey is now 4lbs and 2ozs....and 16 inches long!!! She's getting so big!

Tired

I believe the last 3 months are catching up with me, I'm so tired. I'd love to just be able to sleep for 5 straight hours; no pumping, no light, no worrying. Having a lazy day at home without having to leave the house would be amazing, I'll never take being bored at home for granted again. I can't wait for kailey to come home, we will be locked up in the house for 2 months except for her doctor appointments. I believe that's the best doctors orders I've ever heard.

Failed

So once again Kailey failed extubation. She made it 14.5 hours on the nasal cannula then had to be reintubated. Her SATS and heart rate dropped and they couldn't bring her back up high enough by bagging her so they had no choice but to reintubate. We finally talked the doctors into checking her PDA again. The only time it has been checked was 2-15-12, it was a small PDA at that time but who knows, that could be what is holding her back. She breaths fast, her numbers go up to 130 on the machine for breaths per minute. Her nurse always comment on her murmur. And she has a high heart rate, all of which could indicate PDA. So this is suppose to happen Monday, along with a bronchoscope....
If people would listen to us and the nurses that have actually taken care of Kailey things would a lot better. Apparently Kaileys primary nurse was fighting for her this morning. She was pissed off that they extubated yesterday when they were suppose to wait until today and that they put her on the nasal cannula instead of the CPAP mask...sadly I believe I'm going to eventually get kick out of the nicu, I can't keep telling myself they went to school for this, they know what's best. They can't possibly know what's best for her just by looking at her chart.

Trying again...

Tomorrow Kailey starts another 3 day course of steroids and she will be extubated on friday. Hopefully she will be able to handle it and stay off the ventilator this time. I'm so scared she's going to have a nurse that doesn't know her and won't be able to get her heart rate up if it drops. It's going to be another sleepless night for me. Kailey had her eyes checked again, this time they found something. Not to sure what the lady said but she's going to check her eyes weekly now....Kailey had a wonderful Easter! I made her a pretty purple dress and we took pictures. We found a Easter basket outside our door at the Ronald McDonald house and beside kaileys bed. One of my favorite workers here talked to a church about how much we are struggling trying to stay here with our baby and the next day they dropped off a card for us with 100 dollars inside. We were down to our last 30 dollars and wasn't sure how we were going to get lunch for the next month or so, thank you lord for sending them to us!.....Kaileys BFF may get to home next week! I'm excited for her family but I'm going to miss them.

New Doctor, new plan

So this months doctor is still going to fatten Kailey up, but she let us know this morning that we are going to do steroids again then extubate (after she gains some more weight). This morning we were surprised to hear that Kailey self-extubated last night, I don't know the details but it must not have been to bad b/c they also lowered her rate to 15 last night. She is now sleeping more and acting happy while she's awake and she's actually taking more breaths of her own now instead of relying on the ventilator. I'm pretty sure she didn't like her rate being on 40 with her o2 in the 40's as well....every time Kailey gets intubated she has a bruise or a spot that's missing some skin, tonight I noticed a large bruise on her leg. How does a baby get a bruise like that on her leg unless she was mishandled? I can understand the bruises and places on her chin when she gets re-intubated (I don't like it but I can understand it) but her leg?! HOW? Ugh..she also had a little spot of missing skin under her double chin (yes, 3lbs and she has a large double chin lol)

3-30-12

Today was a good day. I finished Kaileys Easter dress and took it to the hospital, my all time favorite nurse took the dress and showed others Kaileys pretty Easter dress lol. We have gotten Kailey out of her bed for the last three days to kangaroo, she loves it. She also got a new neobar today, it's a little bit bigger since the old one fell off four times in one week. I cant believe how chubby she is getting, she is weighing in at 3lbs 2ozs but they are saying she hasn't grew in length in about 3 weeks. I'm pretty sure someones measurements are off since she's to long to fit in my bra nowadays....well its been a few days since i started on this post so...Now we are just waiting for this months doctor to see if he going to have the same plan as the last one (I hope so) tonight is kaileys bath night which means we will be at the hospital late, (UK hospital) and tonight is UK's big game which means its going to be crazy here. Saturday night people set cars and couches on fire here b/c UK won, kids were running and screaming up and down the street. Cops, fire trucks and ambulances everywhere, I'm terrified for tonight. Wish me luck people!

The plan

Talked to the doctor, we have stopped the steroids. Kailey will stay on the ventilator while she grows, she is at 1280 grams and needs to be 1500 grams before we try to take her off the ventilator again. Her tiny lungs just cant do it yet. Hopefully it doesnt take her long to gain the weight, and maybe just maybe she'll get to go home by june.

Rough night

Ever had one of those images that you wish you could get out of your head but just can't? Well watching my daughter be bagged for 3 mins while pale white with blue lips is at the top of my list! Her heart rate was in the 40's and her SATS was at 1. I had to leave the room so I'm not sure how long they actually had to bag her. The steroids didn't "fix" her. She stayed off the ventilator 16ish hours before she had to get the ET tube put back in. Now she's laying there happy as a clam as we wait for the doctor to figure out what our next step is. She only weighs 2lb 14oz so she's to small for a trach but today she is 2 months old, isn't that to long on a ventilator? Is this going to cause major side effects if she has to stay on the ventilator to grow? Can we try the CPAP first instead of the nasal cannula before even thinking about a trach? So many questions, no doctors in sight *sigh*

1st day of steroids

Today Kailey got her first dose of steroids. She didn't have any of the short term side effects, yet (I've been watching her heart rate and blood pressure all day). She also had her very first eye exam! They said everything looked good, just premature. One of our most favorite nurses has somehow made it so she will be the one taking care of Kailey on Monday, (extubation day) since Kailey's primary doesn't work that day. Now if we can just get our favorite nightshift nurse to work Monday everything will be alright... I'm being picky about the nurses we have on extubation day b/c some nurses won't try to fix the problem or make her comfortable. They just turn her o2's up or get the doctor to reintubate her. Everyone say a prayer for my sweet Kailey to help get her off the ventilator.

Eventful day

The day started off with us worried about kaileys neighbor coming off the vent. Everything went wrong when we were about to start kaileys care. Her nurse flipped her over and the neobar came right off her cheek. Kailey drools a lot and when that tape gets wet it comes off. At first we thought the tube was still in, her heart rate was good and her sats were good. Then the dinging started, her heart rate dropped very low, the nurse had to be rough with her to get it to come back up. Her tube was out. The doctor had came in to talk to us during this and didn't realize what was happening at first. After I told her and the nurse asked for a new neobar she jumped into action. She decided we would try kailey on the ram cannula again just to see how she does. Kailey fought her nurse with everything she had, she wore herself out. During the 3 hours she was on the ram cannula the nurse had to get rough with her to bring her heart rate up numerous times. So Kailey is back on the ventilator and our plan for starting steroids Friday and taking the tube out Monday is back on.

Not the plan

Kailey had some visitors today. Our friends came to see her and she loved it. She kept playing peek a boo and wiggling around showing them how strong she is. We went to get lunch after they visited Kailey for a little while, then decided to head back to the ronald mcdonald house to do some laundry and try to relax a little bit. Our plan was to do Kailey's 8 o'clock care and see how much she weighed and spend most of the night with her. BUT the universe had different plans. A woman that has been on bedrest for quite some time delivered her quads tonight. This shut the whole NICU down. My husband and I have some awesome nurses, so we knew that the quads would be coming along any day. Anyhow, the clerk told us that we have two of the quads in our nursery. That means we won't be able to go see Kailey tonight and we wont be able to get in for her 4 o'clock care for the next few weeks.I'm so scared they are going to rearrange everyone in the NICU and move Kailey to a different room without her neighbor (we have grown very fond of her and her parents, nursery 1 was our little family) I am very worried about the quads and the mother, i'm anxious to get to the hospital to make sure they are okay. They have been in my prayers since we found out about the momma being put on bedrest, and they will continue to be until the day they all go home (which i'm sure will be before Kailey)

3-19-12

So, the weekend doctors are gone and our lovely regular doctor is here again. Kailey is keeping her tube for now. Friday is going to start steroids and Monday her tube will be history. Pray that these steroids don't give her any of the side effects. Kailey's cute little neighbor is saying goodbye to her tube today or tomorrow (depending if they have everything they need today) please keep her in your thoughts and prayers.

OMG

So last week kailey got to try breathing with a nasal cannula instead of the ventilator. She made it 5 hours before the she had to be intubated again. Then we found out about the pneumonia, so she started antibiotics. Today is day 6 of antibiotics and they are talking about trying to take her off the ventilator again tomorrow, with no steroids. (she still has the pneumonia btw) i would love for her not to need the steroids, but one doctor says her xray looks a little worse then before. Which has me wondering why they would attempt this. They are also going to try to take her neighbor off the ventilator as well. There is only one other baby in our nursery, and we share a nurse. Which makes it a little hard when they both need attended to at the same time. Everyone pray that Kailey and her sweet little neighbor do well tomorrow.

7 weeks today..3-15-12

Today Kailey is 7 weeks old, and she weigh 2lbs 6oz. That's a big jump from when she was first born, she looks completely different. Today is day 3 of antibiotics, trying to get rid of her lung infection (ureaplasma pneumonia). I finished her tiny Saint Patrick's Day dress last night, and she is going to look so cute!

3-14-12

Kailey slept most of the day. Her daddy and I got to take her temp and change her diaper at 4 o'clock AND at 8 o'clock (which never happens). She weighed 1070grams tonight! She is gaining weight so well, it's not going to take her long to catch up to the other babies.

Happy St. Patty's Day!

                                                              Mommy made me a dress!

So to celebrate Kailey's first St. Patrick's Day I made her a pretty little dress, (a girl, even this small must accessorize) so we got her a little hat and a tiny pair of sunglasses. Cute huh?  I love to bake, so I made some green and white cupcakes for the nursing staff so they could celebrate too.