Jackson & Kenadi

How cute are they?

Jackson has been so great with Kenadi. I think he knows who she is. When I was pregnant, he would always lift my shirt up and kiss my belly but never Andrew nor I. Now, he comes up to Kenadi and picks her little hand up and gives her a kiss. So cute! Oh, we took Kenadi to her dr appointment. He said that she is doing great! We go back in a month. She weighs 8.6 pounds and is 22 inches long.

Guess What?!

Well, Kenadi has had a great couple of past days. Saturday night, her nurse said that she thought that Kenadi needed to eat more than we had been giving her. She ate about 90 ml each feed for that nurse. Sunday morning during rounds they decided to change her morphine from .9 per kilo every 12 hours to .5. Well she did great with that change on Sunday. She even had the oxygen turned off for a bit on Sunday but then she kept dropping into the high 80s so it had to be put back on. Well on Monday during rounds they decided to switch her morphine to PRN (so just as needed). They also said on Monday that as long as she does fine without morphine and doesn't exhibit any withdrawal symptoms she could go home on Wednesday! how exciting. They also said that as long as her oxygen saturation stays above 85 that was great. Well, she has really never gone below 85 on room air so we were pretty sure that she would be fine. She had already been on room air that day and for the rest of the day she was fine with no oxygen. She continued to do great all night and did not exhibit any withdrawal. We were excited when the nurse told us that first thing this morning. Well, I went in this morning to see her as I always do and she was still doing awesome. She was on room air and satting about 98-100! So great! Also, she still wasnt exhibiting any withdrawal! YAY! Looks like she is coming home on Wednesday! I was so happy to hear all of that. Well, her team came around to do rounds and we were talking and Dr. Mitchell asks when her last does of versed and morphine was. One of the other people goes to the computer and says, well her last dose of versed was on March 20 (or something like that) and she got the morphine at 8:00 am yesterday morning. Dr Mitchell then says, "Well, I guess theres nothing else. We just may have to." Everyone looks at her and says, "You think so?" Dr Mitchell says, "Yes I think she'll need to make the trip today." I look at her and say, "You mean take her home today??! We thought she wasn't going to go home until tomorrow!" Then she says that she didnt mind if we wanted to leave her here for the night and take her home tomorrow. I told her that I would take her home today. I didnt mind. Well, since I hadn't planned on bringing her home today I hadn't brought her any clothes, no blankets, the base to her carseat wasn't installed...nothing! Luckily my inlaws Rick and Pierette are here and so I went out and called them and told them that she was coming home today! They brought up blankets and the carseat base so that we could take her home! Our nurse Rebecca had gone and grabbed her some brand new clothes that they had around. So nice of her! Kenadi then had to do her carseat test. Basically they put her in her carseat for about the amount of time that it takes to drive home and make sure that she can maintain her oxygen saturation. She was perfectly happy and then about 20 minutes later she decided she was hungry and started crying hysterically. So we took her out and let her eat for a bit. So then we started again and put her back in. Well, she had kind of a rough time again but managed to last another 30 minutes so Rebecca said taht we could call it good. Her sats never dropped below 95 even when crying and eating. We got her changed into her new clothes. I then had to go down and get her prescription for Prevacid. Well, then I found out that I couldnt really fill it there. So that was a waste of time. We finally got out at about 2:00 and were able to head time. Here are some pictures from the day

She was moved to a different crib space a couple of days ago. She was originally just to the right of this one.

Just hanging out

Doing the carseat trial

Getting ready to go

Waiting in the entrance of the hospital for Grandpa Rick to bring the car to the front

Coming out of the hospital with Rebecca our nurse (she had to carry the carseat out)

Jackson and Kenadi being introduced

Being a big helper and putting her binki back in

Andrew is wearing a mask because of course he has a cold!

Jackson checking her out again

We are so thankful for everyones prayers! We know that is why she has recovered so quickly! Everyone at the hospital is still amazed that she came home in a month! She is still in a very delicate state and even a small cold could be devastating for her. During her discharge they told us that she will have to stay away from public places, children and of course anyone sick for 4 months- so basically she is in isolation.

One more picture for the road. Grandma Pierette got Jackson some colored bath tablets. You drop these little balls into the bath while filling it up and it colors the water. I think its so cool!

Back on Oxygen

Well, on Friday, Kenadi was having a rough morning. Her nurse said no matter what he did she was just crying and unhappy. He gave her a dose of adavan to see if that would calm her down and it didnt. So then he gave her her morphine a little early. Well, we think with the combination of those two being given within a short time relaxed her so much she wasn't taking in as much oxygen. Needless to say she had to go back on oxygen. But let me tell you, its a very small amount. The resident dr was laughing at her yesterday because of how small of an amount it is. She is on 50 ml flow. He said he was surprised that that small of an amount is even making it to her lungs. So then we started teasing her that she just likes to have something on her face because she is so used to it. Anyways, we will hopefully be trying to wean her off of it and then she wont have to come home on it, but if she does it won't be the end of the world. Unfortunately the nurse that she has today and tomorrow during the day (we assume she'll have this same nurse tomorrow) is not the best in the world. She is much older and doesn't really like to try and see if she can come off of oxygen or eat more or anything like that. In fact, yesterday she was trying to convince me that I really did want to bring Kenadi home on oxygen. WHAT?! Who wants to have to take their kid home on oxygen? Especially considering every other nurse keeps telling me that if we can avoid taking her home on oxygen it would be better, because other wise you have a huge oxygen tank to deal with. Anyways, today I'll be watching her saturation closely and if I see that shes high satting for a couple hours Im asking that she turns it down. I think I have that right. Anyways, her nurse last night said that she thinks Kenadi might be agitated not because of the morphine but because shes a hungry girl! She said she fed her 70 ml (the most we had heard/seen her take was about 80 ml) then burped her and Kenadi fell asleep for a few minutes and then woke back up and was sucking really hard on the binki. So she heated up more milk and took another 20! That is 90 ml which is about 3 ounces! So she suggested that I breastfeed her today (granted that Kenadi is willing) and let her take in as much as she like. I hadn't been breastfeeding because I am slightly paranoid and wanted to know exactly how much Kenadi is getting to make sure she gets at least the minimum she needs to gain weight. Anyways, if we know that she will definitely eat enough it is worth a try to me and hopefully that will take the edge off of the morphine wean. The nurse also said that she did completely fine with the slight morphine wean that they did yesterday. She went from .38 every 12 hours to .34 so not very much at all. She is hoping that they will just change her morphine to PRN meaning as needed. So we will see what happens today.

What's Missing?

Can you tell what is missing? I'll give you a hint...it went in her nose...Did you guess it? Her oxygen!! She no longer is using any oxygen at all. Yesterday, she started high satting a lot so they would turn her flow down by .1 and then turn the oxygen percentage down to 21% which is the amount of oxygen in the air that we breathe. Anyways, at about 1 they just turned her oxygen off all together. They kept the cannulas in just in case she needed to have the oxygen turned back on, but she never did! They ended up taking it out last night. She still low sats a bit when eating, but they are fine with that because she always recovers and really only goes down in to the high 80s so that isnt too bad at all. She did awesome all day without the oxygen on.

She also is doing really well with eating. Today, she ate 280 ml! She only needs to eat about 250 to gain weight so that is fantastic! And let me tell you, when shes hungry she is hungry and wants it right away! So hopefully she really does gain weight tonight because last night she lost about an ounce- not so good.

They decided to wean her morphine so she gets it every 12 hours. She didnt tolerate that too well tonight though. 5:00 rolled around, which is when she would have gotten the morphine again, and she was not a happy camper. You could tell that she was very agitated and upset and would only calm down for a moment and then start crying again. It was one of the saddest things ever. I felt so bad for her nothing helped her. So Jaelyn had to give her a dose of morphine since she just couldnt handle not having it. Hopefully tonight will go better for her. Things are still moving right a long and hopefully soon she'll get to come home!

Jackson's Pictures

So recently Jackson learned how to turn the camera on and take pictures. Let me tell you, he is a photography genius. Just look for yourself

He cracks us up. Oh, and a little side story, I stayed up at the hospital all day long today. When I got home Jackson gave me a huge smile and when I asked for a hug he came over and grabbed my waterbottle instead. Sad! But he made up for it. He kept following me around and grabbing my leg and then when it was time for him to go to bed Andrew told him to give me a hug and a kiss. Jack gave me a hug and then Andrew told him to give me a kiss and showed him how to give me a kiss on the cheek. And guess what, he gave me a kiss on the cheek. It melted my heart. I think there has been only one other time that he gave me a kiss on the cheek. He only likes to blow kisses. It made my night!

Update

So we are totally slacking at updating. She is doing awesome still. They took her feeding tube out today! Hooray! She is doing great with her feedings so they decidedit was time to take that out. She can now eat whenever and however much she wants (as long as its in reason- she was eating every three hours 70 ml, which today she has pretty much stuck with). Anyways, after she ate today at 11:00 she kept "high stating" meaning her oxygen levels were going over 99 so they kept lowering it and finally they just turned off her oxygen and she wasdoing great without it on. She was even able to eat without it on (usually they have to turn it up a bit because she forgets to breathe). When Andrew came to take over she had had no extra oxygen for 3 hours. I havent talked to andrew to see if it was still off. Anyways, she is moving right along. Hopefully they'll wean her morphine some more tomorrow but we will see.
Also, I dont think that we ever said exactly what was found during surgery. The report said that her intestines, spleen, part of her liver and large bowel were up in her chest cavity. Also, they did not need to use a patch or even cut extra muscle from her side but were able to just sew her diaphragm back together (at least this is how the nurse understood it when she was relaying what she read in the report to us). Oh and her left lung is about 1/3 of the normal size. The other thing I wanted to mention was that last Sunday she had an echocardiogram and the girl who did it was the same one who did Kenadi's initial echo up there. She told the nurse that she could not believe it was the same baby! She said when she first did the echo it took her a long time to find her heart. She said she actually had to do it from her right side because her heart was so smashed up against her rib cage. I just thought that this was an interesting tid bit of how squished her heart and lungs were. Well, I have a very grumpy Jackson to deal with so thats all for now.

Update

Well since Andrew has been totally slacking on updating the blog, I suppose I should. Kenadi is still doing great! Yesterday she ate really well. She is now drinking at least half of the total amount but usually more. Actually, the total she took in by mouth was 65% of her total feeds! That is awesome! She is also only getting her morphine every 8 hours now. Between yesterday and today she has not had any extra morphine or adavan (a couple of days ago they switched her from versed to adavan). She looks so great! Here are some updated pictures of her...

So Kenadi really smiles at us. If we tickle her chin she will do big smiles for us and we are pretty sure its not just gas! We tried to catch it on camera but of course werent fast enough. But you can see part of it in this picture.

Still Doing Great!

Kenadi is still doing really good! The doctors and nurses can not believe how quickly she is recovering. The nurse practioner today was telling me that she was here when Kenadi was put on ECMO and everyone was expecting her to be on it for at least 7 days but probably more like 2 weeks and she ended up only being on it for 4 days. She said that she just could not believe how well she is doing. Yesterday during rounds, Kenadi's doctor, Dr Yost, said that she just needs to learn how to eat and then she will be able to come home. He then followed that up by saying learning how to eat can be very difficult for babies, especially ones who had a diaphragmatic hernia. But we are working with an occupational therapist and she is doing a little better each day. This morning the occupational therapist fed her and Kenadi ate 22 ml!! The most she had eaten before that was 10 ml so that was awesome! Kenadi is now on full feeds (2 oz of 60 ml) so they are taking out her central line!! They were hoping to get it out today, but it looks like its going to be tomorrow (the surgery crew has to come up to take it out). Anyways, this is very exciting! After getting the central line out there are no more ivs in her! The only things she will have are her feeding tube, nasal cannulas for her oxygen and sensors for oxygen saturation, heart rate, and breathing rate. Also, they are working on lowering her oxygen from 1 liter/minute to .5 liter/minute. We will see how that goes but at the rate she goes, it will go great! Dr Yost even mentioned how way way way ahead of the curve she is (thats exactly how he said it). These pictures are from earlier today.

Quick Update on Kenadi

Kenadi is still doing great! The doctors moved her from her bed with the heater to a new crib (I promise to put pictures of it up tomorrow). They also changed her Morphine dosage from .1 going to her constantly to .5 every 3 hours (I dont know how much that ends up being but its a lot less). They have also lowered a lot of her lipids and gatorade stuff even more, and continue to increase the amount of nutrition she is recieving from Christina's milk. She is still having bowel movements so that si no longer a major concern.

Today the occupational and physical therapists came and evaluated Kenadi. they were looking to see if there is anything that she would need to work on developmentally in order to function normally. First off they were very suprised at how much advanced she was for only being 2 weeks old. She was able to calm herself down very quickly after getting upset by sucking on a binki and being talked to, which they said was more uncommon for such young babies. They did have concerns with her ability to suck on a bottle and they think it is a little behind where it should be but attribute it to still being on morphine. They also had concerns about her ability to lower her head and put her arms to her side. They said that both of these problems came because she was on so many machines with so many tubes and laying down for so long that she hasnt learned to move her body in these new movements. So they will be working with her for the next little while on all of these concerns to help her develop more normal.

Let me take a really quick second to say how blessed we are as a family. I know a lot of people have been praying and fasting for the health of our daughter. Those prayers have worked! Heavenly Father has listened to all of our prayers. Kenadi isnt home yet, but I she is pretty close to coming home. We are definitely on the backside of the trial. What a blessing that we are here in Utah close to such fantastic specialists and can receive the amazing care that we are recieving. Christina and I both know that we can't contribute all of the success to the book smarts of the doctors and nurses (even though they have been great),  Miracles have been brought about because of everybodys faith and prayers. We are so grateful for everyones support. We are so blessed to have the friends and family that we do. Thank you. 

PS sorry for the lack of pictures tonight, I will make sure to post some tomorrow.

Oops Missed a Day!

So there has still been a lot of progess in little Kenadi's life. She has come off of Versed (a medication used to sedate her) and all of her anitbiotics (meaning she doesnt have any infection that they could find). This means that she is only still on Morphine, Oxygen (between 28-30 percent and the lowest they need to go is 21-22 percent) and Lipids (Fat) and the gatorade like substance full of good stuff for her. As I am writing this, we just got a text from Christina's mom who is up at Primary Childrens and just found out that she had a bowel movement! That means that her intestines are working..Yay!! That was the next big step. I'm not sure what the next step is now, but I think its just coming off the morphine and oxygen.  But here are a couple of pictures that we took today while we were holding her.

Hey I Got to Hold Her Too...FInally!

Today they took Kenadi off more drugs. She got off of her milrinone, which was a pulminary medicine, and she was taken off of nitric gas! They also lowered her morphine and oxygen levels. So it was a great day and on top of that I got to hold her! It was so fun, we held her almost all day.Her nurse Jae Lyn pretty much let us do everything, we took her temperature, we changed her diapers, and Christina got to start trying to breast feed (even though she fell asleep as soon as they started but they did start trying) We also caught Kenadi crying on video which was so fun, even though we shouldnt be so happy to see her cry but we were so excited.

One Big Day!

Today was a great day for Kenadi!! She got her catheter out, her aerterial line (the one in her foot actually came out early this morning and they put it back in in her hand but by the time we got there it was already not working, meaning they really couldnt use it to draw blood or get a blood pressure reading). They also took off two different sensors from her. They also started weaning her from the nitric gas (this is to help her pulmonary system), turned down the flow for her oxygen (she is on a high flow for it), lowered how much she gets of morphine and versed (this is like an anti anxiety drug) and she started feeding! She got 9 ccs of breastmilk through her feeding tube in her nose! Actually, they gave her 9 ccs more three hours later as well and as long as she continues to do well with it they will continue to feed her every three hours! Also, I got to hold her for the first time! I got to hold her for about an hour! It was great! And a couple of videos for your viewing pleasure. Some of them are kind of long. Oh, I forgot to add in some of the videos you hear classical music. Earlier this morning after the drs and everyone checked her over she was quite agitated so her nurse Rebecca got one of the music players for her and she loves it! She is definitely Jacks sister! She woke up so I turned it off and she looked at me like, "What are you doing? Seriously mom turn it back on." She was even kind of fussing. As soon as I turned it back on she was pleasant and happy again. She sure knows what she wants! (oh and if you didnt figure it out, this is Christina posting)