First mohawk!

One of Kale's nurse's, Heidi, gave Kale his first 'mohawk' :) It's little, but I promise, it's there!

Side view :)

Well, if you checked in to see if the 'hottest dad in the NICU' was updating...you're out of luck, haha! My husband is a complete dork, and that's why I love him.

So, Kale has had some great milestones over the past few days, and also one setback. Let's start with the good stuff, eh?

Kale is on ONE liter vapotherm now, he was turned down to 1 ltr at 6am, and they did a gas at 8am which was really good. He will have another gas in the morning to make sure it's still going well. His oxygen levels have increased a bit, he is up to 65% O2, but that's in part because they turned his SpO2 limits to 92-99. He seems to be breathing without much of a struggle, so that's one step closer!!

Other good news, Kale is now taking bottles! I got to give him a bottle tonight (for the first time). He took about 31 mls of his 40 ml feed. He took one earlier in the day as well, and took it all. He has done GREAT with this, and the nurses and speech therapists are very pleased with hoe well he is doing. He didn't have any spells while he was eating, and he does a really good job pacing himself. Speaking of spells, he hasn't had ANY since 7.23! This is fantastic, it shows that he can go 5 days without spells (which is required to take him home).

So, for the not so great news. Kale's eye exam on Thursday didn't go so hot. He developed mild ROP (Retinopathy of Prematurity). This means that his blood vessels in his retina are beginning to grow/develop incorrectly. They were going to do a follow up appointment today with another doctor to get another opinion, but he ended up not coming in and will hopefully be in tomorrow. There are several different stages of ROP, up to 5. His eyes have stage I and stage II. It's all about how far the blood vessels have grown. His vessels have passed zone 1 in both eyes (there are 3 zones, starting at the optic nerve). The further out the zones, the better. It can develop at all different rates, but it seems as though his is on the quicker end, which is why they are watching it very closely. If it develops quickly and uncontrolled, it can cause his blood vessels to grow so quickly that his retina detach and he would lose sight in that eye. But, we are praying that doesn't happen, because they have identified it now and will be able to stay on top of it. If it does continue to develop they will have to do a laser surgery to cauterize the vessels so they stop growing so the retina can't detach. This would cause some loss in vision (most likely peripheral vision) but would hopefully allow some vision to remain. SO - we are hoping and praying that his next eye exam shows no change and it stays as just mild ROP.

We'll keep you posted on how everything goes! Other than his eyes, the Drs. are very optimistic with how he is doing, and anticipate him coming home soon :) Please pray for an improvement in his eyes, we are hoping his eye exam goes well and will keep you posted!

Another Big Step!

Hi everyone, the most sought after blogger online is back! Steph is working late again so I will be entertaining you tonight.

Kale is doing well, he is still on 2 lt of vapotherm, but is much more comfortable. Today was a big day, we found out when Steph got to the hospital that Kale would try bottle feeding for the first time today. He got to try this at 2pm today, this is a crucial part of the process for him to come home for the reason he has to be able to feed and breath at the same time for them to let him come home.... sorry for the run on sentence. Well he performed well today with the bottle, Steph said he did stop breathing for a second a couple times but he did very well! Also, the little pig we call Kale took down 15 ml of that bottle in 10 min. The nurses said he probably could have take the whole thing and they were impressed with how well he ate and how much he ate! He will keep trying to bottle feeding once a day this week to see how well he does.

Also, he now has a rocker type thingy that he can sit in if he is fussy, kale really likes sitting up so they brought it in so he could. Also, we can now very slowly rock him for little stints of time!

Overall it was a great day at the hospital, the Dr. came in today again and expressed how thrilled she was with how Kale is doing and where his heart rate is. Same with the Cardiologist.

Thanks again for all the prayers and thoughts! Keep'em coming!

Until next time, from the now 5 times voted "hottest dad in the NICU", see ya later! (Steph will love this!) ha-ha!

Back up to 2

Well, just a minor setback today. Kale's gas this morning was pretty good, but his oxygen % was pretty high throughout the day (high 60s), so they decided to move him back up to 2 lpm on his vapotherm. They did another gas this afternoon and it looked pretty good. He is still retaining quite a bit of fluid, and this might be causing pressure on his lungs which would explain why he is needing a higher oxygen %.

His weight did go up tonight, up to 5 lbs. 4 oz. This is a pretty big jump, and since he looks pretty puffy my guess is that it's mainly fluid build up.....and the fact that he hasn't had a dirty diaper today probably doesn't help. He's pretty uncomfortable and was very restless and fussy tonight, which is not like his usual demeanor. They are going to give him a suppository tonight at midnight if he doesn't poop before then. Poor guy :(

I spoke with his cardiologist today, and he is very happy with how well Kale is doing. He reiterated the fact that as long as Kale's heartrate stays where it's at then he would be able to hold off doing a pacemaker for a few years, or at least until he is more active.

Kale's BMP looked better today, that shows what his hemoglobin was at, and so that means the blood transfusion helped and got him back up to where he needed to be. They will test it again in the morning to be sure that he's still in the right spot with that.

We're hoping tomorrow brings a little bit more of a peaceful day for our little man, and hopefully he can rest up a bit and go back down to 1 lpm in the next few days!

Doing great!

Good news - Kale got moved down to 1 lpm on his vapotherm today! He has had one blood gas since he was moved down and it was good! What a stud :)

The poor guy does have an IV in right now...in his head. He had to get a blood transfusion today and they put an IV in his head because they had a good vein there. They will leave it in until tomorrow when they do labs again, just in case he needs another transfusion. His hemoglobin was getting a little low, and they wanted to give him a little boost since they were going to be decreasing his oxygen flow on the vapotherm.

Derc spoke with the Dr. today and she had great things to say about how Kale is progressing. We're hoping this week I can begin nursing and see how he does with it. As soon as he can nail that, he's one step closer to going home! Last night I put together his stroller (shower gift from my mom and Sarah!) so we are really ready to get him home now!!!

Thanks for checking in, he's doing great, thanks for keeping him in your prayers!

FIVE POUNDS!!!

Baby shower!! Good times with great friends!

Choo-choo!!! Train cake that my mom made, it was delicious of course!

Cutie!

His first official UNI gear that he has worn - socks from Jodi's parents! How awesome are those?!?

Ahem...that is a NEWBORN onesie folks! And yes, it says 'Handsome like Daddy' :)

Kale had a good weekend! He hasn't really had any changes on any of his settings, still at 2 lpm vapotherm. He is eating well and has hit 5 lbs!!!!!!!!! It seems like so long ago that he was just half that, but really it was just about a month ago! He has just taken off with his weight, the boy can eat!

Kale got to hang out with some visitors this weekend. He is finally at a point that he can be held by other immediate family members, so his Grandma's and Aunt Sarah got to hold him this weekend. It was a nice moment to see and I think they enjoyed it as much as he did :)

Last night we went up to Algona and watched our brother-in-law, Justin, race his car. We had a blast watching Justin race and hope we can go back up again this summer! The boys hung out in Renwick for the night while Sarah, my mom and I came back to Des Moines. A road trip with 3 tired ladies at 1am with mom driving was certainly interesting....

Today we got some shopping in, went to the hospital to see our little man and then my friends threw me a baby shower! It was great to see everyone and I had an awesome time. Kale scored some awesome stuff, so we're one step closer to being prepared when he comes home (hopefully sometime in the near future!) :)

This week all Kale has for tests is his eye exam on Thursday. We're crossing our fingers that he can go down to 1 lpm on his vapotherm and then maybe by next week he will be on wall oxygen.

Thanks for keeping our little man in your thoughts and prayers, he's certainly moving in the right direction!!!

Doing well!

Naptime

So peaceful!

Kale loves his pacifier and his star baby!

Kale has been on a roll lately! He has been doing well on his vapotherm, and is still on 2 lpm. His blood gases have been pretty consistent and maybe in the next few days they will move him down to 1 lpm!

He has been doing great with his feeds as well, still at 40 mls and he is definitely gaining weight along with that. He is up to 4 lbs. 14 oz! He's going to hit the 5 lb. mark soon!!! Hard to believe how far he's come....we're so thankful!

He has been doing pretty good with nuzzling too, hopefully in the next few days we'll get the go ahead to start nursing.

Some other exciting news today - Derc changed his first poopy diaper all on his own, start to finish!!! I didn't believe him, so had to have Jodi confirm, and she said he did great!

We're off to watch my brother-in-law Justin race tomorrow, we're excited!

Have a great weekend, and as always, thanks for checking in on our little man, he's truckin' along!

Day 70

Wow, sorry for the gap in updates! We're happy to report that Kale is doing really well and has been the past few days! He is down to 2 lpm on his vapotherm and his blood gases have been consistent, so the Drs. are really happy with that.

He is up to 4 lbs. 10.5 oz! His feeds have been increased to 40 mls every 3 hours. The exciting news over the past few days is that the Drs. gave the OK to start 'nuzzling'. Essentially this is to get Kale used to the idea of nursing. He has done a really good job and we're hoping that we might get the OK to actually start nursing and bottle feeding the next few days. We're so excited because this is one step closer to coming HOME! He's got the maintaining his own temp thing down, now we just have to get him down to a lower oxygen setting and then he has to eat on his own.

He had his eye exam today and it went well, no changes from the previous time so that's what we're looking for.

Kale has been really alert the past few days during his cares and other times as well. A pretty cool thing happened the other day. I was holding Kale and he was awake and looking around. I noticed that he was doing this thing with his fingers that my dad used to do. He was flicking his thumb with his middle finger (my dad used to do this allllll the time) and he winked at me a few times. So I asked him, Kale is Grandpa Tim here with us? And he flashed me a nice big smile. It was great to have a feeling that my dad was hanging out with us, which I think he's been doing a lot over the past few months, keeping an eye out for his grandson.

Well that's about it for now, not a whole lot to update on recently as Kale is kind of just trying to get bigger and continue to do well breathing on his own. We're so happy that he is progressing so well, he continues to amaze us!!!

Mr. Kale is a stud!

Hi everyone, guess who's back to blogging!! Yea Steph is back working and has had to work late every night since Friday... soooo.. she gave me that look today that said you better update the blog or else... SOOO I gladly agreed to do this...

Well Kale has been doing well over the last couple days. He is now over 15 inches long and coming in at a heavy 4lbs 5oz! Yea i know ladies.... he pretty much melts hearts already so for all you lady babies out there (Brynna Gander) you better watch out!

He is still having one or two spells each day, but these again are common with preemies, most full term babies brains develop the ability to not have apnea spells around 36 weeks gestational age. Kale is not quite there yet.

The doctors today told us they are going to drop him from 3 ltrs down to 2 ltrs at 6am and also stop his sodium, and potassium additives on Thursday to see how he handles it. It seems like they doctors are ready to start pushing him towards coming home. One other thing they upped his oxygen level requirements on his monitor from 85-95 to 90-98. So they want him to strengthen his lungs even more.

All is well other than that, pray for him to get much stronger and take to these adjustments quick and well! thanks for your thoughts and prayers!

Getting big!

Mom...I will KARATE CHOP you if you take one more picture, can't you see my eyes are sleepy?!?

Content in Dad's hands :)

Look at how BIG I'm getting!

So proud!

Kale is getting SO big! He is up to 4 lbs. 4.7 oz now - I'm thinking he is going to be 6 lbs before he comes home from the NICU (That's 3 lbs. more than the minimum weight to get out, right Mom?! Hehe, just kidding!).

Kale has had a pretty stable couple of days. He has had 2 spells in 48 hours, so that's definitely an improvement! He is still at 3.0 lpm on Vapotherm. He has been off his steroids now for over a week, so we're thinking that his improvements that he made while on the steroids are here to stay! His blood gases have been pretty stable as well. The Drs. are thinking that they will keep him at 3 lpm for a few more days and allow him to gain more strength. He had his last immunization on Friday, so he should be done for a while with those.

I think that's about it for updates. See, not much going on the past two days, which we are happy to report! Thanks for keeping Kale in your thoughts and prayers, we appreciate it and are confident that he is doing so well because he has SO many people praying for him!

Long day

Kale says, excuse me... I can't hear you :) Haha, at least I know my mom and Sarah are laughing with me and my stupid sense of humor :)

Look at how puffy his left eye is :( Poor guy is so swollen, when he lays on his belly whichever side of his head he is laying on, all the fluid goes to that side and makes him puffy.

Well, kind of a long day today. Kale had 5 spells throughout the day today, what a bummer. He was moved down to 3.0 lpm this morning and had a blood gas at 4pm. It was about the same as his 8am gas, so that means his body tolerated it fairly well. He had such a long day - along with the 5 spells, he had 2 of his 3 immunization shots today and had an eye exam. Poor buddy. Kale didn't have a terrible day or anything, I think Derc and I are just ready to get him home, and this journey is getting pretty long and tiring. Well, maybe I should only speak for myself, Derc seems to be much stronger than me. It's just that, when you get pregnant or talk about having kids, no one tells you how incredible it is on every level. No one gives you the heads up that it's the most emotionally involving thing you'll ever experience. That, when your child has a good day, you'll be on cloud nine, and when he is sad, hurt, under the weather or just doesn't seem right it will be exhausting for you. Our friends, Emily and Jeff, gave us a card when we found out we were pregnant and I remember what they told us often. Their advice was "Be so prepared. Not for those days when 'whoops we forgot diapers' or 'whoops we forgot formula!'. But be prepared to fall in love so hard and so fast and so much more than you thought was possible! You will be amazed every single day." And it is SO TRUE!!! Ergghh, I think I gave Kale 50 kisses today on his soft little head, and every time I kissed him he would relax, so it just kills me every time I have to leave him. He is going to be so embarrassed when I ask for an adjoining dorm room some day when he goes off to school.

Enough of my sappy stuff...he has gone up on his feedings, and is now at 32 mls every 3 hours fortified at 27 calories. Here's a nice little story for ya...This is how level-headed of a mom I am...(being sarcastic here), yesterday he spit up some of his milk which was the first time I saw this happen. I was holding him when this happened, so his nurse, Jodi, wasn't in the room. Well, I see white stuff coming out of his mouth and immediately sit him up, try to burp him, then turn him over on his belly and start whacking his back screaming, 'JODI!!!!!!!!!!!' and pull his cords off him so his screen goes blank to alert them something is happening. Of course Jodi comes in and saves the day.....which involved seeing that he is just spitting up and realizes nothing life threatening is happening. I was terrified. I was shaking. WHAT am I going to do when he is home and we have NO nurse next door?!?!? Well, simple enough, Jodi is going to have to move in, even though she is getting married in a few months, I mean what are spare bedrooms for, right!? Ughhh I called Derc to tell him my terrifying story and he of course laughs at me and says, 'Jame (he would like me to clarify that he calls me Jame...short for Jamerson....I think that's fairly obvious but he insists :) ), you can't overreact like that!' Easier said than done.....I can't wait for the first time he spits up on Derc and he screams like a school girl......hahaha, just kidding, I'm terrible!

So, Kale's eye exam was about the same today, his eyes are developing well and she will continue to do eye exams the next two weeks. We also had some people come in today to talk with us about the plans for after he is discharged (like the nurses and therapists that will see him when he is at home)...which is kind of exciting because it makes me feel like he is so close to making it home! Pretty cool actually, they have a speech therapist, occupational therapist, nurse, social worker and some other people that will come observe him and judge how he is doing from a developmental standpoint.

By the way, Kale is up to 4 lbs. 2 oz. now!

Well, thanks for checking in on him, he's lucky to have so many people that care about him! Thanks for the prayers, he is so close to coming home in part to how many people are praying for his health to improve!

Better day

Big boy bed!

Cutie pie

Doing good with his pacifier - doing some good training or his bottle

Family pic! Sarah, Justin and Jordan (it's a little dark in the car but he's in there, I promise!) in front of Justin's race car!

TWINS!!!! HAHA - So, for Fathers Day my mom and I got Justin, Derc and Pete the same polo in hopes that we could trick them to go golfing together and they would all show up wearing the same shirt. Well, turns out it wasn't golfing that we were waiting for, just Jordan's birthday party! They had it down to the shorts, sandals and flip flops!! I just kept thinking how my dad would have gotten such a kick out of this and would have had sooo many jokes about them :)

Kale had a better day today, yay! He hasn't had a spell yet today and has been much more stable than yesterday. He is still at 4 lpm and they probably won't turn that down for a few days. He is still off his caffeine and steroids and seems to be doing well.

He is still eating an ounce every 3 hours and was up to 3 lbs. 14.5 oz today, but a lot of that was water weight, so we are hoping that he goes down a little bit tonight.

His cardiologist came in today and was really pleased with how Kale is doing. He said that if he stays in the 90s-100s he may be able to go a while without a pacemaker, at least until he is physically active. But...we're not really holding our breath for it, we'll know a bit more for that plan of action when he gets closer to going home and we have more appts with the cardiologist. But it's great to hear that he thinks he's doing so well!

That's about it for tonight, thanks for checking in!!

Never a dull day!

Well, I survived my first day back to work today, with only 4 calls to the NICU throughout the day which I was pretty proud of myself for! What an eventful day it was, we got to spend about 2 hours or so in the dark at my store because of a power outage. I've never experienced a long power outage like that at a SuperT, lets just say that it takes a lot of plastic and cardboard to cover all the refrigerated and frozen sections in a grocery store. The team did awesome and all was well and the power came back on without any damage to the product, so at least I was able to stay busy and keep my mind off things! Of course the flowers from my mom and Pete, text messages and emails from friends and family wishing me luck helped too :)

Kale had kind of an up and down day today. He is still on the 4lpm and his gas was a little higher today, but still good. He had 3 actual spells today where his HR dipped into the 50s, two times he corrected it himself and one time he needed help to come out of it. When I was there this evening he had about 7 or 8 times that he dipped down into the 60's so it's not technically a spell, but too low for my liking. He is pretty puffy so I'm hoping it's a combination of retaining fluid (one of his eyes was really puffy and the nurse asked if he got into a fight with the baby next door who is quite a hefty one), being on lower flow and being off steroids and caffeine that affected him today. We're really hoping and praying that these spells today were kind of a fluke and he'll recover overnight.

They decided to up his feeds today to 30 mls/3 hours fortified at 27 calories. THAT IS ONE OUNCE PEOPLE!!! He finally made it, that is what I've been waiting to hear since he started eating. I remember thinking it felt like such a long time before he would hit that mark, but of course he never ceases to amaze us and he is downing food like it's his job.

They also decided to stop his caffeine this evening. He has been on that since birth, so we'll see how he likes it. My guess is if his HR keeps going up and down they will probably start it up again.

He will have a blood gas in the morning and we're hoping that tomorrow brings a more stable day for him with a more steady HR. Thanks for checking in!

Happy Birthday Jordan!

I want to start by saying HAPPY BIRTHDAY JORDAN!!!!! It's our wonderful nephew's 2nd birthday today and we're so glad that we got to go to CR yesterday to help celebrate! My sister and Justin did a wonderful job putting his party together and my mom made him the cutest cake. He got lots of fun stuff, and we were so happy we could help celebrate! We didn't bring Mack this year, so there was no opportunity for him to eat any cakes...

Well folks...Kale has a BIG BOY bed! We got to the hospital today and he is OUT of the incubator and has his very own crib :) He was doing well controlling his own temperature so they are letting him try out a crib, and they will just take his temp every 3 hours to make sure he's doing well.

His lungs seem to be holding steady, he was turned down to 4 lpm this morning and he had a blood gas about 2 hours after they turned his flow down and it was great! He is officially off steroids, so this is a pretty big week for him. He has been on some form of steroids for about 3-4 weeks now, so we're hoping that his body keeps the forward momentum going. The Dr. said that about 1/3 of the babies that get steroids improve for good, another 1/3 lose about half of the progress they made and the other 1/3 rebound all the way back to where they started. You better believe that we are hoping and praying that Kale is in that first 1/3 that have improved for good! Kale will have a gas in the morning and will probably stay at 4 lpm for a few days to see how he does. He had a spell today, where his HR dropped to the high 50s, but we were in there and so was the nurse and he came right out of it. So far he has had 3 spells, so about 1 every other day.

He is still gaining weight, so he's really starting to fill out the clothes that he has! He is up to 3 lbs. 12 oz. now - hard to believe he has gained over 2 lbs since he was born! We're hoping that he hits 4 lbs. by next weekend.

We got a chance to speak with one of Kale's Dr.'s today, and we were really pleased with what he had to say. He said that he felt Kale was doing well and said when he first saw Kale those first few weeks he was very worried since he was a '24 weeker whose mom didn't have a chance to get steroids and had a heart block', but now he is very optimistic about his future. He said that if Kale continues to do as well as he has been we may be able to take him home in 4-6 weeks :):):) He is now 33 weeks gestational age and so that would put him right around his due date.

Thats about all from the weekend. I go back to work tomorrow, hard to believe it's already been 8 weeks! It will probably be tough, but I know that we have the BEST support system we could ask for....and I have the NICU on speed dial :)

Thanks for checking in, we appreciate your continued support and know that Kale is doing as well as he is because we have all of you thinking of and praying for him to get better!

Quiet Day

Kale had himself a nice little day today! He didn't really have any changes today - he is still on 5.0 lpm and has a blood gas tomorrow morning. His LAST dose of steroids is tonight. The Dr. said that if his body feels the difference with no steroids then we would start to see that over the next few days so we are hoping and praying that he doesn't dip when he comes off the steroids because he has been doing SO WELL we love seeing him progress!

His feedings today went up to 27 mls every 3 hours fortified at 27 calories - ALMOST ONE OUNCE, WOOHOO!!!!!!!! What a rockstar :) His weight is also up today, he is now at 3 lbs. 10 oz! That is TWO pounds over his birthweight!!!!!! He just looks so amazing, he looks so much healthier and stronger, it's crazy what 2 pounds can do for such a little guy.

His eye exam yesterday came back with the same results, immature retina and at risk for developing ROP. So the eye doctor will come back next Thursday to re-evaluate.

This weekend we are headed back to Cedar Rapids for our nephew's 2nd birthday - can't believe he is already TWO! Hopefully I'll get some good pictures to share :)

Thanks for checking in!

Doing well!

Stretching out

Father/Son time :)

Wide awake!

Our cute little nephew, Jordan....he will be TWO this weekend! Hopefully it's just a matter of time before he can meet Kale and give him a big hug and kiss. Sarah and Justin have been teaching him how to say Kale's name so he'll be ready to rock and roll as soon as Kale gets out!

Kale had a great 2 month birthday yesterday! He has been doing so well on the vapotherm, it's great to see him diong so well! He is still on 5 lpm and is doing really well with it, his oxygen is even pretty low at 30%. He had another spell where his HR dipped to 51 or so then he brought it back up. The Dr. has cut his steroid dose in half, and he is planning on discontinuing it on Friday. Therefore, the weekend and first part of next week will probably show us if the steroids worked long term and helped his lungs or if it was more of a temporary thing. we're obviously hoping for the long term fix!

Kale's weight has started to increase again, he is at 3 lbs. 9 oz. now and as you can see from the pictures he is really filling out!! He has been wearing his outfits every day now and it helps to maintain his temperature.

He has another eye exam today so we'll see if there are any changes there. He doesn't have another blood gas until SATURDAY!! That means the Drs. are confident with how he is doing on this vaportherm treatment :)

Thanks for checking in and for keeping Kale in your thoughts and prayers!

Back online!

Our little angel :) We LOVE that we get to see his face now.

He's getting so big, it's great to hear people react to his size when they haven't seen him in a while. He's up to 3 lbs. 5 oz. today! Hard to believe he has doubled his birth weight.

His nurse, Amanda, dressed him up in a cute little outfit for 4th of July, complete with a baseball hat!

His first baseball card - we never thought his first card would be of him :)

Just goofing off...

We're back online people!!! It's hard to remember what we did before computers. We wanted to get some pictures up since it's been a while since we've been able to.

Not much more to update you on since Derc, my new master blogger husband, updated you earlier. Kale did well the rest of the day, although he did have one more spell today where his heartrate dipped. We're hoping those stay few and far between.

More to come tomorrow, thanks for checking in!

Kale is da man!

Derc again here updating the Blog... Or as Kale likes to say the "the coolest dad ever!" no offense to any other dads out there, he is just partial to me...

So Monday and this morning Kale is still doing great, his 8am gas was awesome, and he had a solid boring night for the nurses. His weight is 3.5lbs, which is going to decrease a little due to swelling going down, and the steroids do stunt his growth a little while he is on them. Once he is off the steroids they say he can hit a big growth spurt, so i am guessing he may be like 6 foot by the time we get him home in August! Scholarship's here we come! (Steph is going to kill me for posting this.) His Dr has pulled back on doing tests and x-rays. So routine tests are only once per week now, and his x rays which were daily are now only Monday's and Thursdays. He will still get eye exams every week though until the eye doctor clears him, which may not be for a long while until his retinas mature.

Our home computer is still not functioning for now, hopefully this week we will get the power cord in the mail, and then we can turn it back on.... pictures will be uploaded immediatly.

Thanks everyone for the thoughts and prayers!

Still Doing Well

Quick update for everyone. Kale is still doing very well with the oxygen. Today we gave him a bath in an actual tub which was great! He loved it and did very well. The doctor today decided that at 5 pm tonight he is going to turn down the pressure the oxygen is being pumped into Kale from lvl of 6 to a lvl of 5. Then he will have a gas at 6pm. This is a good step in the right direction and we are hoping he will do great at lvl 5.

His nurse is allowing us to be more hands on b/c he is handling everything so well. Which is nice and nerve racking at the same time.

That's about all for now, hopefully our computer will be up and running next week so we can start posting some pictures. His night nurse put him in a red white and blue outfit and put a baseball cap on him and took some pictures, he looked cute as could be!

Have a great 4th of July!! Thanks again for all the thoughts and prayers!

Still truckin...

Kale is doing GREAT on the new vapotherm treatment. His gases over the afternoon/night/morning were all very consistent and they feel confident enough in how he is doing to now have another gas until tomorrow morning. They have not made any adjustments or changes to his settings on the vapotherm, he is still at 6.0 liters per minute. We would love to see that number go down to 5 lpm in the next day or so, which would mean he's requiring less oxygen flow to help him breathe. He has been very alert and awake the past day, it seems like he enjoys being able to do things on his own. He has been really steady on this, his oxygen saturation staying pretty consistent!

He got to see his Aunt Sarah, Uncle Z, and Aunt Laura yesterday. He always likes seeing new faces, and I think they enjoyed seeing his face minus all the tape with the vent tube. He just looks so much more comfortable now, I can't wait until our computer is fixed so I can post these pics of his cute little face :) His lip is a bit out of whack since it has been forming around a tube for the past 50 days, it should go back down to normal though.

The Drs. talked about discontinuing his steroids or at least beginning to ween him off starting Monday. Hopefully his lungs are ready for that.

That's about all we have for the day today. It's great to see our little man breathing on his own and doing so well with it, we're so proud of him! Thanks for all of your continued support, we really appreciate it!

Have a great 4th!

Kale is Breathing on his own!!

Everyone i have to apologize from the start. this is not Steph updating the blog, this is her non blogging husband Derc.... please forgive me... this will probably seem like cave man writing...

Well.... we woke up and called in to see how Kale was doing and everything was pretty solid his gas was good and he had a good night.

i get a call at around 11:15am at work from Steph and the Doctor decided to extubate Kale!! So we both rushed to the hospital at lunch, i got there first and Kale had been extubated and was on the vapotherm oxygen, which goes through little tubes in his nose, along with his feeding tube now. So this new oxygen, does not help him breath, it just forces on burst into his lungs and he has to do the rest. His first gas was right on with the one before they took him off the old vent, which is great! His next gas is around 4 pm this afternoon, then i am guessing later again tonight if it is good. He is now 3lbs 6oz and is really starting to look like a real baby. We will try and add pictures as soon as we can, our computer is down for a couple days at home.

Another note: Kale had his first eye exam on Thursday. The eye doctor looked for ROP which Steph can explain but it means the blood vessels in his eyes are not growing properly. Well the eye doctor stated that he does have immature retinas (which is common in preemies as early as he was) so they are going to keep monitoring him evey week. There was some more good news though. Apparently there is a box on the eye doctors sheet that she can check (mild ROP) which she did not check. so no ROP for Kale at this check up! We will keep praying ROP does not develop.

For now, please knock on some wood and say some prayers! Hopefully he doesn't have to go back on a vent and his eyes keep developing, the doctors are concerned he has already been on the vent too long.

Thank you for all your prayers and thoughts!!!

Day 50

Hello all - sorry for the delay in updates, our home computer is down, so luckily the NICU has computers available to use so we can keep you updated (and pay our bills online, haha!).

Kale had a decent day yesterday, he is still on the high frequency vent and his settings have stayed the same. His blood gases yesterday were pretty inconsistent. He had one gas where his CO2 was at 73, then 50 then 64 which is a pretty big swing. Today they have looked more consistent and have stayed in the 60s. Today the Dr. is going to start a different type of steroid. This is Prednisone (no idea how to spell that) and he was on hydrocortisone. This is a higher dose of steroid and will go for a shorter period of time. He will probably be on it 4-6 days or so. We are REALLY hoping and praying that this will work and give his lungs the boost they need to get in good shape. The Dr. is hoping that after 2-3 days on this steroid they will be able to extubate him and get him off the vent all together. He would then likely put him on a treatment called Vapotherm, which would involve wearing a tube around his face with prongs up his nose, like you see when people are on oxygen. This has it's pros and cons. The benefits would be getting extubated and off the vent. The longer he is on the vent the more damage it does to his lung tissues and doesn't allow them to heal as well. The cons involve the risk of being intubated again if his body can't tolerate being off the vent, it causes some trauma to his throat and is a likely possibility. This will also make him do all the work on his own, so if he can't tolerate this it will probably be short lived and he would go back on the vent. SO - the hope is that the steroid treatment kicks in and his lungs start getting stronger in a few days then they can monitor that on the lung x-rays and with his gases. Once he gets to a good place they will extubate and see how he does on vapotherm. We're holding our breath, crossing our fingers and saying LOTS of prayers that this will help Kale.

He is doing pretty well otherwise. He is gaining weight like crazy, he is up to 3 lbs. 5 oz. today. This isn't all that great, because he gained 3 oz. overnight and he's pretty puffy so he's retaining some fluid. He is still on Diurel so hopefully that helps dry him out a little and gets some fluid out of his lungs to reduce some pressure.

Kale has his eye exam today - something we're told isn't all that pleasant for the little ones so we are opting to not be present for that. The eye doctor will look to see if his retinas are developing normally. Babies that are born this early are at risk for Retinopathy of Prematurity (ROP). Essentially this is when the blood vessels in the retina begin forming incorrectly and instead of growing straight from the back of the eye to the front, they begin getting tangled and dividing. This can cause a lot of vision issues and potentially detached retinas or blindness. So Kale's exam today will tell us if he has developed this or if he has any other eye issues. If he has (we're obviously hoping he hasn't) then there are things they can do to try and treat it, like surgery. He'll have follow up appointments before he goes home, and if they find something today then they will probably do another exam in the next few weeks.

That's the big news for the day. Kale could use your prayers for his lungs to react well to this treatment and have a successful transition off the vent. This is going to be a pretty big jump for him so we're hoping it goes well but also being realistic about the possibilities of it not working. We're hoping to avoid the latter :)

I'll check back in tomorrow!