Another first today......Kale got a massage!

Well Kale had a somewhat stable day today. His gases were better than they were yesterday but still weren't great. His vent settings stayed the same throughout the day, so at least they didn't have to increase them. His lung x-rays still looked pretty bad still, and the Dr. told us not to expect those to change any time soon. He said that if his infection goes away in the next few days they may do a 4 day course of stronger steroids to try and get him over the hump. But right now we're just waiting for his infection to clear and for him to gain strength.

He is doing great with his feedings, and he is up to 3 lbs. 2 oz. now! He will probably stay at the same amount of food for a little while longer since he is on full feedings for his weight.

Shannon, Kale's occupational therapist, came in today and did some massage with Kale. She showed me how to do it on him and so I got to give him a little massage today for about 15 minutes :) He LOVED it. It is supposed to release tension in the three areas we focused on which were his neck, shoulders and low back. He is stuck in just a couple of positions all day and so his body gets tense and muscles get stiff and so this is supposed to help relax him. Apparently it worked because his SpO2 was at about 96 the whole time I was massaging him. It was nice to do something for him that obviously was soothing for him. Makes me feel like I can actually help him a little!

Hopefully tomorrow we will get the final reading on his cultures and it would be great if they stay negative. We're still praying for his lungs to heal and get stronger so he can get off this vent and back to the other! Thanks for checking in, I know we have a lot of people praying for his lungs to improve and we are so grateful for that!

He tried so hard!

After a long couple of days of trying hard, Kale went back on the high frequency vent today. His blood gases were not good today so after the 4pm gas he went back on the high frequency vent. we're hoping that this gives him some time to relax and gain strength to fight his infection. He lasted about 13 days on this vent, and we're proud of him for fighting so hard! He is still on the steroids, and the Dr. today said that if his infection clears up in the next few days then they may try a different steroid to give his lungs a boost. We'll cross that bridge when we come to it, right now we're just hoping his lungs can rest and begin the road to recovery.

His ET tube culture came back positive for two different growths. His urine culture came back negative, we still haven't heard what his blood culture is. So, this means he has something going on in his lungs, which would make sense with how his gases have been coming back and how much secretion they have been getting out when they suction him. Poor little guy, it breaks our hearts to see him go through all this, and now that he is back on high frequency we can't hold him which we were starting to get used to.

His weight is up to 2 lbs. 15 oz. today and it seems like he's a little puffy so he's probably retaining some fluid, but he's still having plenty of wet diapers so they aren't worried about his kidney function. He did get his feeds increased again to 22 mls every 3 hours fortified at 27 calories. Hopefully he'll continue to grow bigger and gain strength!

At this point we're really just hoping the next few days brings clear reports from him infection and he's able to recover from the infection. It would be great if he was able to get back on the other vent by the end of the week, but that is probably wishful thinking. We're praying lots that he recovers quickly and his lungs can start moving in the right direction!! He has another gas at 10pm so we're crossing our fingers that it comes back better. Thanks for keeping Kale in your thoughts and prayers!

Could use your prayers

Kale is still fighting hard to stay on this vent, but his body isn't helping him out enough right now. He has had pretty bad blood gasses all day now. At 8pm after another bad gas they switched him to 60 breaths per minute which is the highest they can go. He has another gas at midnight tonight, and if that is not where it needs to be then they are going to switch him back to the high frequency vent. Still no word on his cultures for infection. At this point we ask for your prayers that over the next 3 hours his body does a better job getting rid of the CO2 in his blood and his gas comes back better. Thanks to all, we appreciate it.

Rough Day

Kale had a bit of a rough day today. Throughout the night his blood gases were pretty bad, so they had to change his vent setting back to the 'assist' mode. Now when he initiaties the breath the vent will kick in and help him finish it. They also turned his breaths per minute back up to 55. His gases throughout the day haven't really looked any better, so they are doing another one at 4pm to see how it looks and we're hoping it looks much better! His lung x-ray was pretty bad this morning as well, and they have been getting a lot of mucus out when they have been suctioning him. Today the secretions were a pale yellow color which can indicate infection. Because of this the poor guy had to go through the gauntlet of the infection tests which included a spinal tap, cultures for urine, blood and his ET tube. He also had a CRP test done which tests for inflammation and can indicate infection. His numbers came back pretty high on this at 1.2. The last time he got these tests they were really low at .1 and .2, so we're kind of nervous that it's so much higher. It will probably take a few days to get the results back from his cultures. They started him on antibiotics to be proactive if there is an infection somewhere.

His blood sugars and electrolytes looked good today, so they are continuing his doses that are helping with those. He did get to increase his feeds again today, so he's up to 22 mls every 3 hours fortified at 27 calories. He's only 8mls away from having an OUNCE of food each hour! We're confident this will continue to help him grow and get stronger.

That's about all to report for now, I'll update again later if we get any results back. At this point we just ask that you keep him in your prayers and if he does have an infection he can kick it quickly and get back to focusing on getting his lungs better. The rollercoaster continues.

Pinch me. I am cute.

SECOND OUTFIT :) Pinch me. I am cute.

Look at how my legs ALMOST fill out the leg hole on this preemie outfit, haha!!

Family photo - can't wait til we can have one without all the tubes and wires.

The outfit was a gift from our good friends Jim and Abby Bauer and they just had a baby boy, Jack, who also came early (I think at 32 weeks?). Looks like Kale has a few more lbs. until he really fills it out, but it looks good! Because of the vent tubing we had to dress him from the bottom. It's never a good thing when you can fit the 'head' hole over his whole body, but hey, it works for now!

Hanging out with Dad!

What a beautiful Saturday here in Des Moines! Kale had a good day today, he had some pretty good gases throughout the day. His lung x-rays still looked pretty rough. His vent settings didn't change at all today.

As you can see we got to put a cute little outfit on him today and take a family pic! He got some great outfits from Jim and Abby and we LOVE them! Can't wait til he fills them all out and isn't swimming in them :)

Kale still weighs 2 lbs. 12 oz. and has been doing so well with his feeds that they increased them to 20 mls every 3 hrs fortified at 27 calories. He LOVES to eat :)

Kale has another gas in an hour, as his gas at 8pm was actually pretty high, we're hoping it was just because we messed with him quite a bit this afternoon.

Hope everyone had a great Saturday and enjoyed the day! Thanks for keeping Kale in your prayers, we appreciate it!

I have cheeks! - Kale

Cute in his little outfit from Tia Mel.

Hello world...this is my face without tape. My cheeks are really chapped and red since they have been taped for 44 days. Please don't make fun of me :) Love, Kale.

Hopefully in a few weeks he will be off the vent and extubated so he can have his cheeks free all the time.

Biggg yawn!

Snug as a bug!!!

Well, here is our little man without tape on his cheeks. What a cutie, right?! It breaks my heart looking at how chapped his poor cheeks are. Not only have his cheeks been taped for 44 days, but when they change the tape they glue the new tape in place so it stays longer. I'm pretty sure at this point his pain tolerance is higher than mine.

Kale had a pretty good day today. He has had two stable blood gases since his vent settings were changed at 2am this morning. He went from 55 breaths per minute to 50. He also went out of the 'assist' mode, so when he initiates a breath on his own now it is up to him to complete the breath. His lung x-ray was still pretty hazy. They changed his steroid treatment from 2 doses of .5ml to 1 dose of .8ml. So, a pretty small change so we are hoping he doesn't even notice it.

His weight today stayed at 2 lbs. 12 oz., which may mean that he's retaining some fluid but he's still on his diuretic so the Drs. aren't concerned with it. His electrolytes looked good today so they continued his sodium mixture he has had the past few days.

Today I was pretty excited because I found a bedding set for Kale's nursery and got a great deal on it. I can't wait to finish setting up his room this weekend. Derc and I got to go out to dinner to Buffalo Wild Wings tonight, and we followed our date with a trip to Target and Menards. That's right, we had a crazy Friday night :)

Thanks for checking in tonight! Thank you for keeping Kale in your prayers, they are being answered every day and we greatly appreciate it!

Another stable day

Kale had another stable day today, so no complaints here! He had a blood gas this morning at 4am, and it was right on target so they are not doing another one until 4am Friday morning. Kale has a big few hours ahead of him. At 2am they are going to change his vent settings to 50 breaths per minute. This is down from the 55 bpm that he is at now. They are also changing his vent out of the assist mode. This means that when Kale initiates a breath on his own the vent will not kick in anymore to help him. This will allow him to build up some stamina and build his diaphragm and lungs. We're really hoping that he does well with this and can stay on this vent. We have been able to hold him every day for a week now, and it's absolutely fantastic.

The only other news from today is that his sodium and potassium levels looked better, so they have been able to ween him down a little on what they were giving him to supplement this. He gained A LOT of weight today. He was up to 2 lbs. 12 oz. That's an increase of 4 oz. overnight. I'm thinking he will probably drop tomorrow from either the Dr. giving him some Diurel or he'll have some dirty diapers (he didn't have his normal 2pm 3 diaper mess today).

Other than those things, there really wasn't much to report from today. We appreciate you checking in and ask that you pray for a successful effort on these new vent settings for Kale. We'll let you know how it goes!

Week 6 begins

Kale's nurse last night, Amanda, made him a cute little poster to celebrate his first outfit :)

Bigggg yawn

Hanging out with dad

No time for naps...wide awake!

Another steady day today for Kale, which is a nice start to week 6! His blood gases have been pretty steady over the past 48 hours, so they did one this morning and aren't doing another gas until tomorrow morning! That's the longest he's gone without having one, so we're really hoping it looks about the same or even better. His lung x-ray looked about the same today. The Dr. said that her plan is to either begin weening him off steroids or change the mode his vent has been on by Friday. The current setting of the vent gives him 55 breaths per minute, and Kale has the ability to initiate a breath and then the vent will kick in and help him complete the breath. He has been on this mode for 6 days now and they don't want to leave him on that much longer because it's meant for a short period of time. If he stays on it too long his diaphragm and lungs will get used to just starting a breath and not having to work to finish it. So, they are planning on doing either of those things Friday. We really hope he adapts to the change otherwise he may have to go back on the high frequency vent. We have faith that he'll be up for the challenge! He has been doing better and better maintaining his blood gases in all positions now. In the past if he was positioned on his back or side he didn't respond very well, but the past few days he's done great in all positions.

Derc got to end his work day today by coming to the hospital and holding Kale for about 45 minutes. Kale did great while he held him. He was really alert and kept trying to move his head to look up at Derc...which doesn't work so well when his head is stuck one way because of the vent tubing. We called in tonight and his nurse, Jodi, said that he has been a wild man since the time we left tonight. He has been pretty alert lately.

He is up to 2 lbs. 8 oz. again today. Maybe he'll break through and hit 2.9 tomorrow! As you can see, he looks pretty darn cute in clothes :) Jodi got a few pictures today of Kale WITHOUT the tape on his mouth!! She was changing the tape across his lip and snapped a picture for us since I haven't ever seen his full face, he's always had a tape mustache. We don't want to brag, but he's pretty dang cute :) His cheeks are kind of chubby, which you can't really tell when the tape is on since it sucks his cheeks together. She's going to email me the pictures so I'll post those when I get them so you can see his face.....only took 42 days!

Well, that's about it for us - getting my flat tire repaired (hopefully repaired and not replaced) tomorrow. We woke up this morning to a flat tire in the garage...how does that happen?! Derc woke me up and I had to take him to work.....I was a hot mess walking into the Kum & Go in my sweatpants, 10 year old t-shirt (complete with a hole in the armpit, no worries), bedhead and no makeup. I was seriously praying I didn't see anyone I knew. Derc asked me to drop him off far from his work entrance, haha! G'night!

Steady day

Stable day today with not much to report!

Kale is still on the Drager vent today, and his settings are the same as yesterday. The Dr. didn't say anything about his lung x-ray which means that it is about the same. He had a lot of stuff suctioned out of his lungs today so hopefully tomorrow his x-rays will look better. Kale's gases were pretty steady today, we're hoping they start to improve a little so they can start to turn his settings down to move forward to getting off this vent in the next few weeks.

The occupational therapist came in today and worked with Kale again. She said his back seemed a little tight and offered some ideas of things we can do to help with this. Kale was pretty active today, unwrapping himself from his swaddle and once I looked in and I'm pretty sure he was trying out a kickboxing move.

Today Kale got a BMP lab done which tests for levels of a couple of different things in his blood. They are keeping an eye on his sodium since they were doing the diuretics, they drew another one at 8pm but hadn't gotten it back yet. The Drs. decided that Kale is also ready to try to regulate his own body temperature. He is still in an incubator but he doesn't have a heating pad in his bed and his heating fan thing is not on, so now it's up to him to regulate his own temp. This is exciting because this is one of the first tests they have to pass before they can come home. So, once he can effectively maintain his own temp it's one more thing we can cross off the list!

Tonight his weight was down a little to 2 lbs. 7 oz. His nurse, Amanda, gave him a bath tonight which he did NOT like apparently. Then after his bath she put his first outfit on him. Mom, you would be thrilled that he got to wear his football shirt you got him for...a few minutes. He must be getting bigger because his belly kept popping the velcro open :) So, she took that shirt off and put on another shirt, this time it was the one from his Aunt Mel. This one fit a little better, so we'll see if he's still in it in the morning!

Well, that's about all to report for tonight! Thanks for checking in and for keeping Kale in your thoughts and prayers!

Day 40

So, as you may have read earlier Kale's grade II brain bleed has resolved and we are SO happy about this! We're told that the fact that it has resolved reduces the risk of some developmental issues for him since it reduces the pressure on his brain. There's always a chance that the bleed could come back but we are not thinking along those lines.

Kale had a better day with his lungs and his lung x-rays looked a little better today. He is still on the Drager vent and his blood gases came back better overnight, so they reduced his Respiratory Rate to 55 breaths per minute. His gases were very steady throughout the day today, and while they were a bit on the high side the Dr. is still ok with keeping him at that rate. His lungs are probably getting used to actually having to inflate and deflate 55/min and it's a big change for his body from the 900 breaths/min he was getting for the first 36 days of life. His diaphragm is having to work now, and it didn't before since his lungs just stayed open. But, so far he's hanging in there on this vent and we're saying prayers that he can stay on it and we can continue to hold him every day!

He had a blood transfusion today for the first time in about a week and a half. His numbers were a little on the low side, so they decided to give him a little boost and get some more blood and they will draw another lab tomorrow to see if his numbers look improved. He is getting some meds now to help his sodium and potassium levels since he is getting pretty dried out on this diuretic. Kale's weight is up to 2 lbs. 8 oz. again, so he's moving in the right direction!

We're happy with how the day went today, and we're so proud of our little guy! Thank you so much for your thoughts and prayers, we know that we had a lot of people praying for great results with the brain scan today and we're so thankful that they are working and God is watching over our little one. We're lucky to have so much support!

Quick Update

Brain bleed results just came back and it is RESOLVED!!!!!!!!!!! This is FANTASTIC news, we're thrilled!!!!! Ok...just wanted to let you know, I'll write more later :)

Happy Father's Day!

Well folks....Kale has lasted all weekend on the Drager vent! He went in strong into the weekend, and then yesterday and today had some not so good gases. Derc and I were pretty sure that by today he would be back on the high frequency vent with the way things were trending. But, he surprised us again and had a great gas at 8pm tonight and he will have another gas at midnight to make sure things are still looking good. His lung x-rays look worse, and our nurse told us that they are what they call a 'white-out'. She said that on x-rays air shows as black, so when looking at a x-ray of lungs, they should be black and filled with air, and when they are gray or 'hazy' as his have been it means there is either fluid of some sort, scar tissue or inflammation. So, the fact that they have hit 'white-out' status isn't good. They gave him 3 doses of Lasix yesterday and then today started him back on 2 doses/day of steroids (he was down to just one dose) and also started him on a new diuretic today. His potassium levels were looking low since they have been drying him out with Lasix so much, so this new diuretic shouldn't affect his potassium levels as much, but will affect his sodium levels which they can easily supplement. We're really hoping that with these treatments his lung x-rays look better tomorrow morning. Derc got to hold Kale today which was a great Father's Day gift. Kale did incredibly well while Derc was holding him, his oxygen saturation stayed above 90% almost the whole time, and he got to hold him for about an hour. After Derc held him they drew a blood gas and it looked much better than his previous one, so it must have been Dad's lucky touch :)

He is still handling his feedings really well and is back up to 2 lbs. 7 oz. (he dipped to 2 lbs. 5 oz. over the weekend due to the diuretic). His length is up to 14.5 inches!! He grew a whole inch in a week, woohoo!!

This week Kale has another brain scan (Monday) and next week he will have his first eye exam. We're really hoping that his brain scan shows that his bleed has improved, maybe even completely resolved.

Today was a pretty long day, and for me, one of mixed emotion. It was so great to see Derc with Kale, and watch how Kale responded to him. He is already a great father and loves his new role, and I can't wait to get our little guy home so they can take naps together and watch football games. I'm so excited for all of our 'family firsts' together. Derc and I traveled back to Cedar Rapids after we were done at the hospital and just got back into town. It was the first Father's Day since my dad passed away in January. I knew this day would be incredibly difficult for me, and I'm lucky to have such amazing family to lean on for support. Derc and I met my sister, Justin and Jordan at the cemetery in Cedar Rapids to visit my dad's site. I got to spend some time sitting there with them and 'talking' to my dad. We all miss him very much but it was nice to have all of us sitting around just talking, and thought about what he would have said had he been there talking with us. He definitely would be telling jokes, and they would likely be jokes at either of his son-in-law's expense :) He would have loved hearing Jordan say, 'Hi B-pa!' (which apparently means grandpa in 'almost 2 yr. old talk'). I think he would have liked to hear stories of how Kale is doing and he would have said he's a fighter and would have followed that with a hand on my shoulder saying, "I wonder where he gets that from" with a wink. He would have told Sarah and I he's proud of us. He loves us. He would have told the boys the same thing, just not in those words - in some other form of man-talk. We miss him like crazy, there is no doubt about that. But we know he's around, especially on days like today - When we go to the cemetery and the sun shines right on his spot like it did today. He has ways of saying 'I'm here'. Love you dad.

So...Happy Father's Day to all you fathers out there, we hope you had a great one! Thanks for checking in on Kale, we're hoping his week is steady and he can stay on this vent through the week and his brain scan looks good!

Still on the Drager!

Crazy weather day in Iowa! Pics of the storm rolling in from my back deck.

Well, another first for Kale today - he made it through his first tornado warning! Today we saw a lot of nasty weather in Des Moines. I woke up to tornado sirens and went downstairs, when I saw this front coming in....yikes! I'm terrified of storms, so wasn't super excited when I saw this, realized I was alone in the house with the exception of my dog Mack, who as it turns out is also terrified of storms! We got to spend the morning in the basement. I called Derc at work and their tornado 'safe place' is the bathroom so their whole office was hanging out in the bathroom. I called the hospital to check on Kale and his nurse said they were in a 'Code black', which apparently means tornado time for the hospital. Whenever we get storms like this I immediately think of my Dad because he loved watching storms come in. Tornado sirens would be going off, the newspeople telling us to take cover and he runs outside to watch. Now, I like to think that he has a front row seat to all the craziest storms.

Kale had a pretty good day today. His gas this morning wasn't great, so they changed a setting on his vent to open the air pockets in his lungs a little. His gases throughout the day got better, so he is staying on the vent for now! His 6pm gas was the best all day, so they aren't doing another one til tomorrow morning. this means I got to hold him again today....I could get used to this :)

His lungs looked wet again today so the Dr. ordered 3 doses of Lasix to dry him out again. Hopefully it's working and his lung x-ray tomorrow morning looks better as the nurse today was suctioning a lot of nasty stuff out of his lungs.

Other than that, not much to report from today! We're off to dinner with some friends, and tomorrow will be a very busy day with Cory and Laura's bridal shower and bachelor/bachelorette party so I'm not sure if I'll be around a computer for the daily update. If not, I will make sure to catch you up to speed on Sunday! Thanks for checking in, have a great weekend!!

Happy Fathers Day, Derc!

Stinky............oh well, if that's his biggest problem, we'll take it!

If you've ever eaten at Chipotle, or Pablos in Cedar Falls, Kale isn't much bigger than one of their burritos when he's all swaddled. I know, that's a terrible comparison.....but it's true :(

Happy Fathers Day, Derc!!!!! Now if they would just let Mack upstairs to the NICU we would have a family pic with the whole family :)

Sooo peaceful!

That's one proud papa!

So, as you can see, Kale made it to the new vent today!! WAHOO!!! He went on the vent around 10:30am and has had 3 gases since going on it. They have looked progressively better throughout the day, so he won't have another gas until tomorrow morning. We're REALLY hoping that he can stay on this one for a while. We just talked with Jodi and she said he's been a little higher on his oxygen tonight, up to about 50% when he was around 30% all day. She put him back on his tummy for the rest of the night since he seems to do better when he's on his belly. Needless to say, we were very happy that Derc finally got to hold Kale! He has been waiting patiently and he finally got his turn. Kale looked nice and comfy in his Dad's arms, it was great to see Derc holding him...I can just imagine the two of them sitting together watching football this fall in the comfort of our own home! And, of course, we'll have Mack on our laps too :) Once Derc was done holding him I got to slide in and hold him again for a bit, it was a fabulous feeling yet again.

Anyway, we got to speak with the Dr. today and she said that the general goal is to get babies off the vent by 32 weeks...so that means Kale has about 2 weeks to get his lungs nice and strong and ready to breathe on his own - likely with the help of some other therapies, but at least he won't be intubated!

The other thing we learned today is that Kale's diapers are REALLY starting to smell. I mean bad. Derc and I walked into his room today and wondered what the smell was...Jodi informed us it was our son, haha! We feel so bad - he's on fortified formula so his diapers are really rough, and the poor kid is stuck inside an enclosed incubator so I don't know how he breathes in there...no wonder he gets cranky sometimes! Later in the afternoon I noticed that there was some air freshener in the room, and I asked Jodi if she brought it in. She said no...which is just great because that means the lady who cleans the room must really think he smells too! Oh well, we should get used to that I guess...can we say Diaper Geenie?!

Tonight was the start of a fun weekend for us. Derc's brother is getting married in August, and I went to a shower for his fiance, Laura, tonight. It was fun (even though I was super late - sorry again Laura!) and was a good practice run for their bachelor/bachelorette parties this weekend. Tomorrow I have a good friend coming in town and we're going to meet up for dinner with some other friends! Then, Sunday Derc will be able to celebrate his first official Fathers Day!

Well, thanks for checking in, we know we had a lot of people rooting for Kale that he would get on the other vent today, and he did so THANK YOU!! We're hoping that he has a good night and can stay on it tomorrow!

Week 5

Pictures from the weekend - Derc, me, my Mom and Pete before dinner.

Jodi positioned him to hold his own pacifier, it was pretty funny to see! Too bad the pacifier is just about as big as his head.

Trying out a new pacifier today.

Kale is officially 5 weeks old today!! It's crazy to say that time is actually going by pretty quickly. Well, our Drager vent wishes went unanswered today :( Kale had some bad blood gases throughout the night and early morning, and his lung x-rays looked wet. Because of this, they decided to give him 3 doses of Lasix through the day and night tonight to try and dry him out a little and take pressure off his lungs. The Dr. said that if he has a better night tonight they will probably try it out tomorrow. We sure hope so!

Today his weight dropped back down to 2 lbs. 6 oz. This is due to getting the three doses of Lasix, and he may drop more tomorrow as well. He is still tolerating his feedings well and his feeds and vent settings have remained the same. His blood sugars looked better today, they were much more stable.

Kale has been really active lately, especially during his cares. Today after we swaddled him back up after cares were over I peeked in his incubator and he was wide awake, waving his hands around, and once I caught him with a firm grip around his vent tube which makes me very nervous! He somehow managed to get out of his swaddle 5 times before I asked Jodi to re-do it...obviously I wasn't doing something right! Hopefully I'll learn how to do that before he comes home :)

Thanks for checking in - and as always, thanks for keeping our little man in your heart, thoughts and prayers!

Quiet day

Well Kale had himself nice little Tuesday. He had a pretty relaxing day, and all that he really endured today were his typical blood gases every 8 hours or so. His gases looked really good throughout the day and they didn't make any vent changes.

Derc and I got to speak with the Dr. for a bit today about the plan for the week. She said that if his night tonight continues as well as his day was that she will probably try him out on the Drager vent again tomorrow! We're really hoping that this is the case and that he does well for a while longer on it. She said that Kale's lung x-rays remain the same, still pretty hazy. We also talked to the cardiologist today and he said everything looked the same, so the plan for his heart is to continue to wait until he gets bigger before we talk about doing a pacemaker.

Kale is doing well with his feeds still and they didn't make any changes there today. He is gaining weight nicely this week, he's up to 2 lbs. 8 oz.!! His blood sugars also looked much better today, they were all in the mid 100s which is right where they want them to be.

Like I said, not a whole lot to report today, which we're grateful for! Thank you for your thoughts and prayers, they seem to be working! We're crossing our fingers for the Drager vent tomorrow :)

Short lived victory

Kale had a victory today, even if it was just for three hours :) Jodi, his nurse called this morning to let us know that the Dr. wanted to try him out on the Drager vent to see how he handled it. She told me that she told the respiratory team when they brought the vent in that they better be bringing in the lucky vent because we wanted him to stay on it this time :) Well...he got to stay on that vent for about 3 hours. They tried a few different settings and his gases just weren't responding very well. So, they switched him back to the high frequency vent around 2pm and his gases looked much better on that. While he was on the other vent though Jodi was suctioning a lot of mucus out of his tube that goes into his lungs. She said a lot of times the high frequency vent won't let the mucus come out of the lungs because it's constantly pushing air in. So, one way to look at the short time on the other vent is that it gave him a chance to get all that gunk out of his lungs. We're crossing our fingers that he gets another shot at that vent later in the week, hopefully right in time for Fathers Day!

The other change made today by the Dr. was to increase his calories for his food. He is at 27 calories now, and his volume is still at 18 mls every 3 hrs. His weight was at 2 lbs. 5 oz. today, and his length is up to 13.5 inches! So, that means he's tolerating his feeds and growing, even though he's a little below the growth curve.

Today they also decided to change the frequency of his blood labs. He was getting labs drawn every day, and now they are going to bump it down a bit and just do them a few times a week. So, that's a sign that they feel he's a bit more stable!

We're praying that Kale has a good night, gets some rest and over the day tomorrow his gases improve so he can have another shot at the other vent later in the week!

Visitors galore!

We are happy to report that Kale had another stable day today, which wrapped up a pretty good weekend! The Drs. decided to put him back on the hydrocortisone steroid treatment today, but just at half doses. He is getting half the dose he was and is getting it twice a day instead of three times. His Dr. said that his lung x-rays looked a bit more hazy this morning, which is why they decided to put him back on it. His oxygen levels were pretty low today, right around 25-35% for the majority of the day which is great.

His feeds stayed the same today, at 18 mls every 3 hours fortified at 24 calories. They think tomorrow they may fortify it to 27 calories. He lost some weight today, and is back down to 2 lbs. 5 oz. We're pretty sure this happened because Kale pooped on our nurse for about 5 minutes during his 2pm cares :) We got to the hospital and she was laughing telling us that she went through a stack of diapers and had to have another nurse get her more wipes, so we figure that had to drop him quite a few grams!

Kale's gases throughout the day were pretty good, so we are happy with that. The Dr. hasn't made any changes to his vent, which means he's holding fairly steady off the Nitric treatment. We're still hoping that he graduates to the other vent this week so Derc can hold him on Father's Day.

Kale had a few visitors today! He got to see his Grandma and Grandpa Rainbow, Aunt Sarah and Uncle Justin, and his 'Uncle' Mike. Kale was hamming it up for them, showing off how big he can stretch, how he can open his eyes...he was a little embarrassed when they got to watch his diaper change. His cousin Jordan gave him a nice drawing that says his name to put up in his room to bring him some good vibes. We got to wrap up our night tonight by going out to dinner with Sarah, Justin and Jordan before they headed back to Cedar Rapids.

Tomorrow feels like the first Monday in a while that we haven't been anxious about as all of his tests seem to fall on Mondays. We're hoping and praying that his week this week is smooth and his lungs continue to improve so he can switch vents. We hop you all had a fantastic weekend, and thanks for keeping Kale in your thoughts and prayers!

Bath time!

Bath time!!! We got to give Kale his first bath (at least the first bath from his parents!) tonight.

Tag teaming bath time, Derc holds the tube and also holds Kale up off his bed and I give him a sponge bath.

Kale says, 'I don't know what you guys are trying to do here...but I'll go with it!'

Soooo as you can see, we got to give Kale his first bath tonight!! And, we're well aware of the fact that he already had his first bath, but first baths don't count until the parents get to do them, right?! So, tonight we got to give Kale a nice little sponge bath. Derc was in charge of lifting Kale off his bed and holding his tube while I washed him with top of the line hospital shampoo/soap. Kale enjoyed it, he did very well, and Derc even finished his day at the spa by brushing his hair with a nice little comb :)

Kale had himself a nice little day today. His oxygen levels were in the low 30s for most of the day, and he remained stable as well. His vent settings remained the same today and he seems to be doing well off the Nitric treatment. The Dr. decided to discontinue the steroid treatment since it was impacting his blood sugars so much. We'll see over the next few days if he continues to do well without the treatment, but we hope so!

He had his feeds increased today to 18 mls every 3 hrs fortified at 24 calories. His weight is up to 2 lbs. 6 oz. now, which is a FULL POUND over his lowest weight. He has been doing really well with his feedings, we're so proud!

Today they took his PICC line out....cross your fingers, because he didn't have the best of luck last time they took this out. We're hoping it's for good this time!

Grandma and Grandpa Rainbow were in town tonight and got to see Kale. We went out to a nice dinner to celebrate bath time :) Tomorrow Aunt Sarah, Uncle Justin and cousin Jordan are coming in to town to visit the little guy.

Thanks for checking in and for sending positive thoughts our way, we appreciate all your prayers!

Day 30

Derc taking care of Kale's 2pm cares - almost made it through the whole poopy diaper this time....so close!

Naked time...he's embarrassed

Big stretch!

Well, Day 30 is a stable day.

The good news: The Dr. decided to take him off the Nitric treatment completely today and see how he responds. so far he has done pretty well, and he's been off it now for about 4 hours. and he's still at about 28% oxygen. His gases have been a little bit up and down today, but that's to be expected with going of the Nitric treatment. He's still on the steroids, and they have begun to slowly ween him off of those and will continue to ween him very slowly over the next week or two. The Dr. said that his lung x-rays looked significantly better today compared to Monday. Woohoo!! (Amy, did you just do a kick?! Haha!) The Dr. did say that he definitely has some significant lung disease, but that will probably be the case for a while, but we're still happy he has improved over the week.

He has been tolerating his feeds well and is at full feeds at 16 mls every 3 hours fortified at 24 calories. He tipped the scales today at 2 lbs. 5 oz. The Drs. would like to see him gain .5-1 ounce per day now that he is consistently on full feeds. We'd like to see that too! Kale's kidney function still looks good as he is consistently having wet and dirty diapers.

We got to speak with the Dr. today for a bit, and he seemed to be happy with how Kale was doing. He said that compared to other 24 weekers he's doing pretty well even with his heart condition. We of course are happy to hear that but we're not surprised with how tough Kale has been. We're still crossing our fingers that the weekend goes smoothly and maybe Monday he will be on a new vent (one that allows him to be held every day).

The not so good news: His blood sugars have been really all over the place today, which the Drs. told us to expect since he's on the steroid treatment. His blood sugars were anywhere from 306 to 28 today. They have controlled it with insulin and sugar drips into his IV, so we're hoping this levels out a bit.

We're happy to report that that is all for the 'Not so good news' portion today!

We hope everyone has a fantastic weekend and thanks for checking in on our little guy!! We appreciate all the support and prayers!

Introducing Kale's Korner

Snuggle time with our other son, Mack. He has missed out on a lot of attention the past month, but he's been a good boy and is always a good cuddler :)

Shot number 1 of what I like to call 'Kale's Korner' We put up gifts that Kale receives, and we like to think it gives him good luck! In this shot we have:

-UNI onesie from Grandma and Grandpa Rainbow

-11Z sticker from Uncle Justin, same ones that are on his race car

-BABYALBRECHT banner and angel pin from Grandma and Grandpa Albrecht

-Gems of Hope serenity circle from Bruce and Beth Hammell

-Pictures of Cory and Laura, Derc and I and Mack

-UNI flag from Derc and I

-Target Great Team Card from me

-Cross from Grandma Rainbow

-REAL 4 leaf clover from his favorite nurse, Jodi

Kale's Korner goodies:

-Baptism certificate

-Wooden Angel from Grandma and Grandpa Albrecht

-St. Louis postcard from Sally Schick

-Baby Boy cross from Aunt Sarah, Uncle Z and cousin Jordan

-Froggy from Debbie Hornbuckle

-Bear from Aunt Sarah, Uncle Z and Jordan

-'Lucky Speedo' (it's a long story :) ) from Aunt Sarah, Uncle Z and Jordan

-'Hope' statue from Grandma and Grandpa Rainbow

-Turkey bobblehead from Mike Matthes

-'Sometimes the smallest things take up the most room in your heart' plaque from Kerry Sweeney

-Hot wheels collectible car from a family that donates cars to the NICU who had a baby there for a while

Whew...I think that's it! Kale has A TON of support, that doesn't even represent all of the good luck charms he's received, there simply isn't room for all of them in his little corner :) But we appreciate all of the notes, messages, cards, trinkets that have been sent our way, and Kale will appreciate them when he understands all that happened in his first months of life!

Kale had another stable day! He was able to be weened down on his oxygen and Nitric settings. He was around 30% all day with his oxygen and his Nitric was moved from 10ppm to 5ppm. From this point the plan is likely going to be to continue to ween down the vent settings and Nitric settings and hopefully (cross your fingers and toes!) move him to a new vent next week. His steroid treatments have still been going well. His blood sugar has been pretty up and down with each check but that is expected with the steroid treatments. The Dr. said he expects him to be on the treatment for a couple of weeks, at least until his body is producing enough of the hydrocortisone on its own.

Kale also continues to handle his feeds well, he was bumped up to 16mls every 3 hours fortified at 27 calories! He's just a little porker, we're so proud! He's tolerating them so well, and he is starting to fill out! He is up to 2 lbs. 4 oz. today. I'm noticing that he is looking healthier, he has cute little cheeks, some chub on his arms, a bigger belly and when I changed his diaper I even noticed some butt cheeks!! Before there were just bones, so I shouted (ok...more like a loud whisper) to his nurse, Jodi, "Look, he has butt cheeks!!!!" We're so proud :)

We had another surprise today when we called in for our morning update. We found out that Kale had a new next door neighbor, and it turns out it was one of Derc's college roommates baby! For those of you who know Tanner Varner, he had a baby girl, Mia, yesterday and she is going to spend a few days in the NICU but she is doing well! Small world!!

Well, that's about all for today, I'm going to try and get some pictures tomorrow to show you how plump our little guy is getting...I'm hoping I'm not just imagining things :) Thanks for checking in and for keeping Kale in your thoughts and prayers! Your prayers for his lungs to improve seem to be getting results, thank you!!

Another stable day

We're happy to report that Kale had another stable day! We have realized that stable days are fantastic, both for Kale and mom and dad!

Kale is doing a great job on the nitric and steroid treatments. They have decreased his vent settings again, with his amplitude down to 24 and his oxygen in the 30s-40s the majority of the day. They also decreased the Nitric down from 15ppm to 10ppm. We're hoping this trend continues into tomorrow, and he flies through the treatment!

Kale is back up to full feeds, wahoo!! He is at 13 mls every 3 hours at 27 calories fortified. We're very happy about this, we hope it helps pack on the pounds...errrr grams. He stayed at 2 lbs. 3 oz., maybe tomorrow he'll hit 2.4.

Really, this is about all to report from today! We've come to appreciate days that there is not much to update you all on. The less craziness the better for our little man. Thanks for checking in and for keeping Kale in your thoughts and prayers!!

Moving in the right direction!

We are thrilled to report that Kale had a better day today! He really seems to be responding to the Nitric treatments. His vent settings went down today from 38 in the morning to 28 this evening (they changed it 3 times). His oxygen levels also went down from about 80% to low 50s. The decreased the Nitric from 20ppm to 15ppm. We're hoping his blood gases stay good throughout the night and the trend continues into tomorrow.

Kale got a blood transfusion today and also got some doses of Lasix to continue to try and dry him out a little. He is back up to 13 mls every 3 hrs for his feeds, we're so happy that he got back on track with those so quickly. He has been handling them well so hopefully tomorrow they will begin fortifying it again up to full calories. He remained at 2 lbs. 3 oz. today as well.

The Drs. did decide to start Kale on Hydrocortizone, which is the low dose steroid that the body naturally produces. They are hoping that the combination of the steroids and the Nitric treatment that this will give him a big boost and his lungs will start improving more quickly. We really hope this is the case! He is doing pretty good in every area with the exception of his lungs, so Derc and I kind of feel like that is the next big hurdle. I'm not sure how long they will decide to do the steroids, it can be a couple of days or a couple of weeks depending on how he reacts.

So, we feel that he had a good day today, and we're excited to see if these treatments will continue to help his lungs. Thank you so much for keeping Kale in your thoughts and prayers!! We know that a lot of people have been praying for his lungs to improve, and greatly appreciate it!!

Brain Scan

The results are in, and we like them!

The technical results: Ventricular size is unchanged and within normal limits. There is decrease in size of the Grad II left-sided hemorrhage in comparison to the prior study. Near-complete resolution of intraventricular blood. Periventricular regions are unchanged. Resolving Grade II left-sided hemorrhage. No new intracranial abnormality.

Nontechnical results: Brain bleed is getting better, blood is being absorbed so it isn't putting as much pressure on the brain.

We're happy with that!! Thank you so much for your prayers for Kale today!!

I.Got.To.Hold.Kale!

Family photo!! This one is going in a frame!

Cutie pie :)

Best moment ever :)

Sorry for the delay in updates, the website was down so I couldn't post anything until now.

As you read, Kale had a pretty rough weekend. His day yesterday wasn't much better with his vent settings and oxygen high. He had to have his PICC line reinserted yesterday, it took 3 or 4 tries for them to get it in, poor guy!

The good that came from yesterday was that I got to hold him!!! The nurses saw that Derc and I have been pretty on edge recently and our nurse, Maribeth, recruited some other nurses to help get Kale in a position that I could hold him. They had to wheel up a gurney from the ER so I could lay on it. My body had to be above the vent tubing since it holds some water and if the tubing goes above Kale it could drown him because it would flow right into his lungs. It took 5 people to maneuver the machines and him to get him into position since they have to turn of his vent and bag him until he's in position. It was stressful watching the transfer, but as soon as he laid on my chest it was all worth it! It was a moment I'll remember forever, his body is so light, but he moves as I would expect any baby to. His fingers would grab against my skin and he would tap his fingers on my chest. He just slept there for about an hour and a half. His oxygen levels went all the way down to 60 after spending most of the day at 80. I was grateful the nurses let me do it, now we have to get Derc a turn!

Today Kale had his third brain scan and an echocardiogram. The echocardiogram showed that his PDA was slightly open, and now there is blood going through it. However, the Drs. don't feel that it's contributing to his lung issue since it's a slight opening, so they are choosing not to treat it with medicine at this point. The reason is that they feel the medicine is hard on the body and if the benefit doesn't outweigh the risk they don't want to do it. We still do not have results from the brain scan in.

Today Kale's Dr. discontinued the antibiotic that he was on as his infection tests are coming back negative. He also had his feeds increased to 10 mls every 3 hrs. He is on a low dose TPN drip for now which they will probably discontinue tonight. He got a blood transfusion today and they gave him some doses of Lasix to help dry him out a bit since it looks like he's retaining fluid. He is up to 2 lbs. 3 oz. now! We're hoping he can continue to grow and get bigger and stronger.

The Drs. are trying something new with his lungs since he is moving in the wrong direction in that area. They brought another machine up that hooks up to his vent and it pushes Nitric gas into his lungs. I believe this helps keep his lungs expanded while allowing them to bring his oxygen % down. Today since they started it he was at 90%, and now he's down to mid-60's, so it looks like he is responding to it. However, his SpO2 levels are still kind of all over the place. The Dr. talked to me today about starting Kale on some steroids for his lungs. They are thinking about doing a low dose of a specific type of steroids our body naturally makes (I want to say this is Hydrocortizone). These steroids are a bit less aggressive so aren't as tough on the rest of his body. We'll see if the Dr. introduces those in the next couple of days.

Over the next few days we're really hoping and praying that Kale's lungs improve. His body is doing pretty well otherwise, but his lungs are not moving in the right directions. Kale can definitely use your prayers and positive thoughts. We're really hoping it can turnaround and reduce the stress on his body.

Thanks for checking in and for your prayers, we know we had a lot of them coming our way today with his tests. I'll update later with results of the brain scan!

Mark it on the calendar...940 grams :)

Well, today was a better day for Kale, Derc and I. Our little man is so strong, he amazes us each and every day.

Kale has picked up his urine output, which the doctors were happy with. They continued his abdominal x-rays throughout the night last night and today, and they did not see anything they were concerned with. This means that he got to resume eating today!!!!! They started feeds with him again at 5pm, and he is on 7mls every 3 hours. They will work his way back up to 'full feeds' and once they do this, they will fortify it with formula, then discontinue the TPN again. I'm sure it will take at least a few days to get back up to full feeds...but at this point we're just happy he's eating again and his stomach/kidneys are working properly and there are no concerns.

His gases were decent today, and his vent settings haven't really changed at all. He is still fairly high on his settings, we're hoping those come down in the next week or two and we can start thinking about a different vent.

We got some good news today - Kale had some chromosome tests sent out about 2 weeks ago. When he was born the Dr. had some concerns about the fact that his ears were kind of low set. She wanted to rule out any possibility for Down's Syndrome, or any of the Trisomy syndromes. Thankfully, these came back negative and we just found out today!

Kale had a blood transfusion last night, and we're pretty sure that this helped bump up his weight, BUT he hit 2 lbs. 1 oz!!!! We're thinking this will probably drop a bit tonight, but he finally hit 2 lbs., so we're happy :)

He is still on antibiotics in case there is an infection going on inside somewhere. We are still waiting on results from his blood and urine cultures. We probably won't know those until Monday or Tuesday.

So, better day today! We're hoping this trend continues tonight and tomorrow. Thanks for all of the messages after our day yesterday, we always appreciate your support!! Thanks for praying for Kale yesterday, we know it helped with his turnaround today!!

Trying day

Ugh, today was a long one. Kale had a pretty stable night last night, and about 10am this morning I got a call from the nurse saying that they were doing a bunch of tests on Kale because he hadn't had a wet diaper since 2am which is quite a while for a baby. So, they did a blood culture, urine culture, CRP, blood test (for platelets and white blood cells) and x-ray to see what is going on. They are trying to hold off on doing a spinal tap until it's absolutely necessary. The first CRP and blood test came back good, and it will be a few days for the urine and blood culture. The abdominal x-ray didn't show anything. They were looking to see if there were air packets in his stomach, and there weren't any. He finally had a wet diaper at 1pm for me, and he had another at 5pm. The Dr. was still concerned so she ordered another x-ray at 6pm and 8pm. The 6pm x-ray showed a slight compression on a piece of his bowel. Not sure what this means exactly, so they are watching it carefully with the x-rays and are watching for any abdominal swelling.

His gases came back ok today, and his oxygen was a bit more stable. His lung x-rays were about the same today, so we're happy that they aren't any worse!

Due to all of his complications today they had to discontinue all feedings until they figure out what's going on. That's an unfortunate setback because then he won't be gaining much weight. Also, since they discontinued feedings they had to reinsert his IV to give him TPN for nutrients.

The cardiologist came in today to see if his heart looked ok, and wasn't retaining fluid. He said it looked ok, but he thought that Kale's PDA may have reopened slightly. He said he wasn't overly concerned because there wasn't any blood flow through it. He will come back in Monday to do another echocardiogram to verify.

The positive things from today: his umbilical cord finally fell off and he has a cute little bellybutton (it's an innie for those who are wondering!), and I got to do about 5 minutes of 'positive touch' with him, and when I was doing it his SpO2 level shot to 100%, so that made me feel like I was helping in the only way I can.

So, needless to say, it was a very tough day for Derc and I. We keep thinking that we'll get used to these ups and downs, but it doesn't get any easier. Throughout this journey we have received an outpouring of support and encouraging messages. The first few days that Kale was born, Derc and I had a lot of questions that we'll never know the answer to, "Why us?", "Why Kale?", are just a few we had. We have both always thought that God has a plan for each of us, and that it's not our place to question that plan. When life throws you situations like this it can be hard to keep that spirit, but thanks to all of you who send encouraging messages each day, celebrate when things are good and are there to lean on when things are tough, we're able to stay positive. I'd like to share something that one of my good friends, Jacqui, gave me that helped me look at things in another light.

It's adapted from Motherhood: The Second Oldest Profession

Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit. This year thousands of mothers will give birth to a premature baby. Did you ever wonder how mothers of preemies are chosen?

Somehow I visualize God hovering over Earth selecting His instruments for propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"Armstrong, Beth, Son. Patron saint, Matthew."
"Forest, Marjorie, daughter. Patron saint, Cecelia."
"Rutledge, Carrie, twins. Patron saint...give her Gerard, he's used to profanity."

Finally, He passes a name to an angel and smiles, "Give her a premature baby." The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a premature baby a mother who does not know laughter? That would be cruel."

"But does she have patience?" asks the angel. "I don't want her to have too much patience, or she will drown in a sea of self-pity and despair. Once the shock and resentment wear off, she'll handle it."

"I watched her today. She has that sense of self and independence that are so rare and so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make it live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you." God smiles, "No matter, I can fix that. This one is perfect. She has just enough selfishness." The angel gasps, "Selfishness? Is that a virtue?" God nods. "If she can't separate herself from the child occasionally, she'll never survive. yes, here is a woman whom I will bless with a child who comes in a less than perfect way. She doesn't realize it yet, but she is to be envied."

"She will never take for granted a spoken word. She will never consider a step ordinary. When her child says 'Mommy' for the first time, she will be witness to a miracle and know it. I will permit her to see clearly the things I see - ignorance, cruelty, prejudice - and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, the pen poised in mid-air.

God smiles, "A mirror will suffice."


Pretty good huh? Yeah, I cried, but I pretty much cry at the drop of a hat these days :) Anyway, just thought I would share because I loved it!

Have a great weekend! We're hoping that Kale has a better day tomorrow and he recovers from whatever is going on inside. Thanks for keeping Kale in your prayers!!

Better Day

Well, Kale had a more stable day today, which we are thankful for. His blood gases looked much better today than they did yesterday, which hopefully means that his lungs are doing a little better. His oxygen levels were pretty high today still when he was laying on his back, up to 85%, which is much higher than we are used to. His SpO2 level was more stable today, with fewer highs and lows. His lung x-ray this morning looked a little less hazy, however his lungs looked a little overinflated, so they backed off on one of his vent settings a bit in hopes that they would deflate a bit. He did much better when laying on his belly today, his oxygen levels were down to about 60% when he was on his stomach. We're hoping the 4am gas and 6am x-rays look even better and they can start weening him back down.

He is still tolerating his feeds really well, and they increased his volume even more today! He's just a little porker, we love it! He is up to 13 mls every 3 hours, that is almost a HALF an ounce every 3 hours people!!! Remember when just two weeks ago he was at 1 ml every 6 hours? That's right, he's pretty much a rock star :) So, now he's at 104 mls in a 24 hr. period, so close to 4 ounces which is an average bottle. The nurse today said she wouldn't be surprised if they leave him at 13 mls tomorrow and increase his calories, so we'll see what the day brings.

Derc got to enjoy changing his first poopy diaper today!! Well, I guess I should say he almost did...for those of you who know Derc and his struggles with dirty diapers, you won't be surprised with how this went. He got to be there for Kale's 5pm cares, and we saved the diaper for last. Derc got as far as undoing the diaper and looking to see what was inside and had to close it back up because he was gagging. He did this about 4 times before he gave up and we switched. BUT, I have to give him credit, it was a nasty diaper and he did try hard, I was impressed that he stuck in there as long as he did, because his eyes were watering and he was dry heaving before it was over. He has some work to do before Kale gets home because mom's not going to be around for all these :)

Kale and I made a deal today that he needs to get off this vent before Father's Day. I told him that if he was able to do that then I would let Derc be the first to hold him. He didn't put up much of a fight, so I think we were in agreement. It would be a great Father's Day gift for Derc to hold him for the first time...so we'll see, we're crossing our fingers!

Thanks for checking in and for all of your support. We had quite a few people reach out to us after Kale had a rough day yesterday, and we appreciate that so much! Thanks for keeping him in your prayers, the little guy has so much support. We would also like to thank everyone who has added Kale to prayer chains they are involved in, with a special thanks to the congregation at St. Mark's in Cedar Rapids! Have a great night!

He has a healthy appetite!

He says, "Look!! Neither of my feet have lines in them!!"

Well hey little man!! Both eyes open, and he's enjoying the scenery...kind of. Sorry for the shade, we have to keep it dark for his eyes.

The nurse, Jana, taking one of his machines out of the room since he no longer needs it! Ok...it may be temporary if he needs a transfusion or drip of anything it will come back, but they have discontinued his TPN (artificial nutrition)!

Today had its ups and downs, as does every day really. I'll get the not so good stuff out of the way. Kale's lungs seem to be struggling a bit more than usual the past two days or so. They had to change his vent settings quite a bit today, up from 24 to 28 and he's been at about 70% oxygen. His SpO2 levels were all over the place today, from 40s to 90s and his blood gases didn't come back very good. The Drs. did a second lung x-ray to double check tube placement and see if his lungs looked more hazy than they did at his morning x-ray. I haven't heard back on the results yet, but I'm hoping this is just a spell, poor guy :( Also, his blood sugar is still all over the place, so they are continuing to watch that pretty closely.

On to the good news! Kale tipped the scales today at 1 lb. 15 oz.!!! As Derc would say, he's just dominating these feedings, haha! The Drs. increased him to 11 mls every 3 hours and he is still on fortified meals at 24 calories. The plan is to increase the fortification up to 27 calories tomorrow and probably stay at the 11 mls as this is considered a 'full feeding' for a baby his size. As he continues to pack on the grams he will continue to get his volume increased. So, the fact that he is on full feeds means that his TPN (artificial IV nutrition) was discontinued today. This also means that his PIC line was removed (the one that started in his heel and went up his leg to his belly region). Anytime we can remove lines is good as it decreases the risk for infection sites. Kale now has BOTH arms and BOTH legs clear of any IVs/lines/drips! Now his wire/tube count is down to 6 (I think he started at 12) with only his vent tube and feeding tube actually going into his body. The other wires are all leads to his heart monitor, pulse ox and blood pressure. Not to say IVs aren't still in the picture, he just hasn't needed a blood transfusion in a few days so they took that out.

The cardiologist and occupational therapist came in today to observe him. Dr. Becker (Kale's cardiologist) really just makes sure everything is the same since there is nothing he can do until Kale gets bigger. He was happy with where Kale was at with his heart rate and said the other day that if his heart rate stays in the low 100s that we may be able to delay a pacemaker for a few YEARS. Not that we're getting ahead of ourselves, but that was reassuring to hear. The occupational therapist observed Kale's movements and did some stretching with him since his back muscles seemed a bit tight. We talked about some different positioning we can do to help with this.

We hope tomorrow brings a better day for Kale's lungs as he seems to be going in the wrong direction, and we know it's stressful for the little guy. Thanks for keeping him in your thoughts and prayers!

We've got two eyes!!

Big news of the day is that Kale opened his other eye, so we're 2 for 2! His eyes don't have color yet, they are just dark pupils. The nurses said that he can probably see about 12 inches or so but at this point it would just be blurry images. We only get to see his eyes during cares, so unfortunately Derc hasn't seen them yet since he is at work when we do cares. We're hoping tomorrow he can time his work day to be there for the afternoon cares and see his son's eyes open for the first time!

Kale's blood gases were pretty good today, so no big news there. He is still at 1 lb. 12 oz. and is at 9 mls every 3 hours with the fortified food. I'm crossing my fingers that tonight is a good night for weight gain.

Kale's lung x-rays are still hazy, and unfortunately the nurses are getting more and more mucus out each time they suction the tube that goes down to his lungs (which they have been having to do more frequently). It's great that they are able to suction it out, but not good that his lungs continue to produce it. The Drs. said it's completely expected with micropreemies, but we always like to think Kale can out-do the expected.

Kale's phosphorous levels have been dipping a bit and are low on the range the Drs. want them within. They aren't sure why this is happening and are trying to control the levels through different dosage in his TPN (which is his IV nutrition). Also, his blood sugar levels are kind of on a roller coaster the past few days. He's been on the high range but his body has been able to bring it back into the normal range about every other time they test it. They can give insulin to regulate it, but they would like to see his body take care of it itself.

That's about it for tonight! Thanks for keeping Kale in your thoughts, he's getting better each day!