Off the ventilator!

So we went to visit Kenadi tonight. Christina stayed with her all day, and I went up after work. By the time I got there, she was off of the ventilator. Which is awesome because just a little after I got there, she started crying. Not like a full out baby cry, but just a small tiny cry. It was great cause that was the first time I ever heard her cry at all. When she was born she kinda squeaked but she has been on a ventilator ever since then which makes her not be able to make any noises. So it was fun. We almost got to hold her for the first time but it looks like we are going to have to wait one more day to be able to do that. The nurses were still just a little worried about her stitches and whatnot. Thats totally understandable. Here are some pictures with her just on her oxygen and no ventillator. Hopefully tomorrow there will be pictures of us holding her. So I am looking at these pictures,she looks bruised and not so good, but I think it was just the lighting, because when I was looking at her she did not look bruised. So ignore any weird bruises or dark eyes or anything like that. In person she looks really healthy even though she got her mom's pale skin. Oh but you can see her scar on her belly, and thats not because of the lighting.

Day After Surgery

Kenadi was doing so great todaythe day after her big surgery. The doctors all felt that she was doing so good that they decided to move her to a different ventilator a couple of days earlier than intended. On this new ventilator her chest doesnt vibrate like it did, and it allows her to breathe easier on her own. In the next two days, the doctors and nurses think she wont need a ventilator at all. Once that ventilator comes out she will be able to cry. It feels a little odd that we are excited about a baby crying, but we havent hear her cry yet. Then after that they will look at taking out a tube in her side. When that comes out we will be able to hold our baby for the first time! We are seeing a lot fo progression and are so excited about what we are seeing happen!

Surgery Is Over

Well thank you everybody for all of your prayers. I know it helped Kenadi a lot, and everybody's support has definitely lifted Christina and I up.

Kenadi's Surery went really well. She came out of surgery at about 12:30. We havent talked officially to the surgeon yet, she had another surgery to hurry off to, but from what we have heard from everybody else things went really well. Her nurse said the hole in her diaphram was relatively small. Meaning they were able to repair the hole with muscle and whatnot already there. This is a huge blessing because had she needed a synthetic patch then she would have ad to have future surgeries to put in larger patches as she grows. S things are looking great right now.

We dont know much about her left lung yet. We do know that there is a "good size chunk" of it in there. Over the next couple of days they will be able to see how it has expanded and how its working and learn whatever else they need to in order to help it grow.

The major blessing overall so far is that the really really worrisome part is over, at least in my head, since they got all of the parts back to where they are supposed to be. However it will be difficult as we try to help her rehablitate her lungs and get her intestines working and whatever else figured out.

I just got to go look at her exrays and they confirmed that there is a large portion of her lungs there, it will just be a while to open it up and get it working. So it looks fantastic!

Here are a couple of pictures of Kenadi just after her operation.

She is in surgery right now

Well its about 10:00 am and Kenadi is currently being opperated on. They kicked us out at about 9:30. I did manage to sneak a few pictures before they started. But She was down to about 30 percent oxygen (which is awesome). Sure all of the great things we are seeing now will be erased with the surgery and it will be like starting form scratch, but its great that her body is in a good enough place right now that it will be easier to rehabilitate afterwards. Heres the pics. I am very confident here in a couple of hours I will be able to report good news!

Kenadi Update

Okay, so surgery is scheduled for 8:15 tomorrow morning (of course this is subject to change, as everything is in the hospital, but she is on the schedule for then). All of her doctors and nurses are Super optimistic with how everything is going. The NICU director came up to me today and put his arm around me and asked how I was doing. He then told me that he is extremely happy with how well she is doing (they have actually had to turn her ventilator down because she has been doing some breathing on her own which is so great!) and that he thinks everything is going to go really well tomorrow. I joked with him that I was excited that she was finally having surgery and I didnt know if it was wrong to be excited. He said that I could be since in  her case she has to have it so he told me it was good that I was excited. So, we are anxious to have the surgery done and to know the extent of her hernia. They said it will take roughly 2 hours give or take (once again you just never know with these things). Oh, I should add that after her surgery she will be back to being very swollen and sedated. The nurse said that usually they are more "sick" for a good couple of days after surgery and then we start to see more improvement.

Kenadi was feeling really well tonight it seems. She woke up and was moving around and looking at us as we talked to her. She kept flinging her right arm back and it was like she was trying to get her ventilator out. The nurse said that as babies get feeling better they realize that there shouldnt be tubes down their throat or on them so they will sometimes try to move them. She said that it is quite possible that Kenadi is realizing that tubes do not belong in her throat so thats why shes keeps hitting them. It was pretty funny though because she would throw her arm back and would catch a finger around the little tubes and then kind of pull. She sure is FIESTY! She also loves to stretch her legs out as far as she can and then spread her toes. We decided the other night that she likes to kick her left leg off of her little bed so that it would be more on the cool side (kind of like how people sleep with their feet out of the covers). Well, here are a couple of pictures of her little bed area (her grandma and grandpa Trapp got her the eyeore and canada flag- the canada flag is a whole other story).

Happy 17 Months Jackson!

Jackson is now 17 months! I cant believe how quickly time flies. He is so much fun! He loves Loves LOVES to dance. He will even dance to the hymns during church (hey, I figure as long as he is being quiet its alright). Yesterday evening we made brownies together. Somehow he figured out that licking the spoon is the best part (I swear i did not show him how to do it- he did it all on his own)

We will have to wait even one more day!

So today the surgeon came in to look at Kenadi. She found some swelling which she said would cause problems for the stitches from the surgery, but she is draining a lot of the fluid she had built up before the last surgery. So it looks like she will end up having surgery on Tuesday morning instead of monday afternoon. Bummer deal. But the surgeon said that because she is progressing so much in her breathing capability it will be better to wait longer for the surgery, and with waiting the odds that the surgery will be successful dramatically increase. So that is some welcomed good news.

Today we had fun hanging out with Kenadi. She stayed awake for a lot of the time that we were there which made it so much fun. EvenEmily and dylan came up to see her and she stayed awake for some of that. Here are a couple of pictures from today and if I can get the videos to work I will post one of those also.

Postponed One More Day

So because Kenadi is retaining a little bit of water (like 2 lbs) and is a little swollen, the doctors and surgeons decided to postpone her surgery from sunday to monday night. She is still doing really well, and while we were there today she even woke up and was almost interactive! It was so great to see her open her eyes and look at us! She was kicking and doing all kinds of movements, sadly we forgot our camera so we didnt get any pictures of it, but she is doing really great, just a little puffy!

She's off of ECMO!

Tonight at about 6:00 they removed the ECMO tubes from Kenadi! This is a huge step. Let me explain. Now with her not being on the heart and lung machine, it will be easier for the surgeons to operate on her insides. They needed her to be on it for a while to help rest her lungs and help strengthen them. Also to make sure the rest of her vital organs are in working order. SO they have done all of that and have scheduled her surgery for Sunday afternoon! This is of course depending on how she does over the next 48 hours. Here are a couple of pics of Kenadi post ecmo removal surgery.

Last Night

Well last night was a good night for Kenadi. They were able to move her down to 80 on the ECMO machine. As long as she stays stable, they will be able to take her completely off of the ECMO machine! This is great news! They are actually doing the Heart ECHO to test how her heart is doing and then they will test her without it. SO things are looking good so far!

New Pics of Jackson

Jackson playing with the pillows from our couch. He loves to pull them off and jump around in them.


Jackson was outside with his grandma and grandpa Trapp. Is he not one of the cutest little boys ever?

Thursday's News

Kenadi is progressing. her doctors are trying to get her off of the ECMO machine. She was at 140 (whatever that means) and today she was moved to 120 (which is good) and tonight they will move it to 100 and then tomorrow they will move it to 80. This is really good, because anything lower than 80 means she shouldnt be on the ECMO machine. So when she is stable on the 80, they will look to remove her from the ECMO by first clamping the ECMO machine for a short time and seeing how she reacts. If she reacts fine, they will take out the whole machine, and she will be almost ready for surgery. She will need to be stable without the machine for about 24 hours then they will do the surgery. Enjoy the videos below of kenadi moving around. We love seeing her move and have her react when we touch her. There is one video with her eyes covered. They were just trying to help her calm down because she was moving around too much.

We did talk to the doctor about the bleeding in the brain. He said it was no big deal, and is just something a lot of toddlers get, and there may even be a lot of children functioning normal that have it and nobody knows knows because it makes no difference. So as long as it doesnt spread, everything is fine in that sense.

Kenadi Videos

Pretty Flowers

Bobbie and her family sent us beautiful flowers. Jackson thinks they are beautiful too!

We have not forgotten our wonderful little Jackson. He is doing great and such a happy little boy! He has had a lot of fun having his grandma and grandpa Trapp here, grandma Muffler and Uncle Adam. Don't worry, we will keep putting up pictures of him as well!

Jackson in the Morning

So this morning I woke up at about 7 and hadnt heard Jackson...usually he is at our bedside by 6:30. Anyways so I went and looked for him in his bedroom and he wasnt in there...I looked in his bed and behind the chair and under his bed and in his closet. I started panicing then I went in the living room and looked for him in there cause maybe he was laying with Grandma and Grandpa...but he wasnt in there. So now really really worried I went and broke the news to Christina.She was way out of it, so I dont even think she understood why I was freaking out. Then I walked out of the room and heard a Jackson grunt. But I still couldnt find him. Then I realized that the bathroom door was closed. Sure enough I opened the door and there he was.

Kicking Legs!

So we went and visited Kenadi today at Primary Childrens. Let me just say she is one pretty little girl! Anyways...This morning when my mom went to visit the nurses told my mom that they were thinking of taking her off of the medicine that was keeping her whole body still. By the time we got there she had been completely off of that medicine. She was taking breaths every once and a while all by herself, she also flinched when we tickeled her toes, and when the nurses came in and had to adjust the monitors, she was kicking all over. She is soooo ticklish, we found that she is the most ticklish on her feet and just below the ribs, its funny to watch. The nurses said before we came in she was able to open her right eye, but the sweeling was still too much to open her left eye. There was a little bit of bleeding in her brain, but the doctors adjusted the amount of blood thinners she was recieving and then gave her an ultrasound on her brain and things appeared to look not so bad. We will find out more about that later on. Tonight and tomorrow morning, the nurses will start moving her to be less and less dependant on the ECMO machine. This is vital to being able to perform the necessary opperation. A big step, and one of the more difficult steps. The doctors we talked to all appeared to have complete confidence that she will be able to perform the necessary steps right on track. We will see....thanks for everybody's prayers and support!

A Video of Kenadi's Room

Kenadi Update

First off we are so grateful for all of the awesome people that have shown their support for us! As for Kenadi, she is moving more and more to the ECMO machine. Which is great for her. It is really hard to see her on the machines and devices. But she is still doing as great as she can be under the circumstances, yesterday we went up and brought Christina's parents, and also my Brother Adam, and my mom. They all got to see Kenadi and we had a pretty good time. Her nurses are incredible. They are very experienced and because of Kenadi's serious condition, she has two nurses watching her 24 hours. She is in the most serious condition in the NICU at Primary Children's.

We are now just waiting for her to be stabilized on the ECMO machine, and then they will start looking at possibly doing the surgery to move her intestines down into her abdomen. Here are a few pictures that we took last night at the hospital.

Its a Girl!

Kenadi Paige Muffler was born today January 22, 2010 at 5:01 PM. She was 19 inches long, and 7lbs 1 ounce. So just about an hour after they broke her water, Kenadi came on out. Christina started pushing at about 4:45 and did great. At about 4:50, and the sight of Kenadi's hairy head, I started feeling a little light headed and so I told the doctors and nurses about my feeling light headed and that I was going to go have a seat. I felt bad stealing some attention, but they kept saying, "you look very pale, are you alright?" But I survived...anyways back to the baby...

When Kenadi came out the Doctor said she had the ambilical cord wrapped around her neck and shoulder, which was causing a few dips in her heart beat while christina was having contractions, but the doctor said everything should still be fine. They tried getting her to start crying but were constantly unsuccessful. She would make very quiet noises, kinda like a baby cat (I wouldnt know what a baby cat sounds like but thats how christina described it). Then they called in the neonatal intensive care unit(NICU) doctors to come and see if they could suck out the mucus and get her to cry, but they couldnt, so then they wisked her away to the nicu. After checking on Christina who was doing marvelouly great, I went and followed Kenadi and all of the doctors. They hooked her up to a ton of different machines, and had of ton of nurses and doctors surrounding her.

The Neonatologist eventually came and he kind of ran the show. He ended up doing a lot fo tests. he could hear her heart on the right side of her chest but not so good on the left. SO he figured something was wrong internally. He got the x-ray machine out. They figured out that her diaphram wasnt fully developed, and so her intestines moved up into her upper chest, causing the lungs to have trouble forming. and squishing other important organs like her heart. Then they decided to life-flight her to Primary Childrens Hospital. There they can perform a surgery or whatever else they need to help her. Constantly I had nurses doctors and everybody else coming up explaining what was going on, they did great at helping me through it. Then the neonatologist came up to me and explained some more about what he found. Now I was on the verge of tears most of the time in the NICU, but as soon as he said she had to be life flighted to Primary childrens, I broke down. After calming down a little bit, I followed christinas obgyn back to the labor and delivery room, to explain to christina what was happening. She explained it very well, and appeared to be on the verge of tears herself. It appeared she left quickly so that she wouldnt break down in front of us.

Right before we Kenadi was lifted onto the stretcher and incubator to go on the helicopter, Christina and I got to go in and see her. Boy is she beautiful! Christina held Kenadi's hand and foot for most of the time we were in there. I was able to give her a blessing of health before she left. Then they loaded her up on the stretcher, and off they went. I did follow her out to the helicopter, and at first we got all the way out there, and there was no piolot, and come to find out somebody was planning on being lifeflighted also, so we had to wait for the next helicopter. But then it came and she went.

More updates will come as we find out more about her condition. Please keep her in your prayers, we need all the prayers we can get!

Getting Closer

Well they just broke christina's water about 15 minutes ago, and things are looking pretty good.