More pictures

Morgan Sue with her new Do, Thanks Auntie Buffie. It's what she wanted for Christmas. Johnathen FINALLY got to ride his new bike. It was so cold he only lasted 10 mins. He thought his bike was too big. He was a bit intimidated at first, but he raced up and down the street.
Neleh on her new bike. She loves her Hello Kitty helmet. She is almost three and can barely reach the pedals. She can really get going though!
Oh Neleh you are so funny. She is trying to squish this NERDS box. Look at that crazy hair! And she is wearing her Christmas dress, I didn't get it put away yet.

Snow day and Christmas

Morgan was "pleased" with her BOX. It is her hope chest. Thom calls it her "get the crap out" box. It is tradition in my family to get a hope chest the Christmas after you turn 16. Then you get items for your future home. Neleh DIVES into the candy. She is shoving NERDS in her mouth.

Christmas Chaos at the Quists! Thom and mini Thom- I mean Johnathen. They hand out the presents.
Severin happy with candy. The hat says "Babys First Christmas" it matches Dads and Johnathens. BUT his head was too big (fat Quist noggin) so I cut a slit up the back, still not enough room, so I put an elastic in to hold it on his head. It fits perfectly inbetween chin 1 and chin 2. I'll get him an adult size for next year.
This was our trees after the storm on the 21st, I did hope one would fall down it is the only way Thom is going to let me get rid of it.
This is more to show the depth of the snow, not Thom with the snowblower. Anyone who knows us, knows I do the snow blowing.

Another Miracle

I hope everyone had a wonderful Christmas. We all got everything we wanted, even diarrhea. Lucky I know. Earlier this week Thom got a call from the Infectious Disease Team at Primary Childrens, informing us that Severin was exposed to Whooping cough while in the hospital. Seriously, staph and then whooping cough, can anyone say germ warfare? I could not imagine him coughing, he cries when he sneezes. They said incubation is 3 weeks he was exposed on the 3 rd, so if he still was not coughing by Christmas he would be ok. So far so good, not even the diarrhea. I am so grateful for the Lords hand in my sons health. His OT came to see him on Weds. He is doing really good. We both think as soon as he can tolerate being on his tummy he is going to take off. He has lots of new toys to play with and encourage rolling. He is on 1/16 liter of oxygen. He has been doing well on that amount. I tried to turn him down last night but he couldn't maintain. Thats ok, its not a race. His heart will heal and his body will grow and not need extra O2. When he is tired he rubs it off and I let him be for a bit. He has started nursing at night again, YEA! I didn't properly appreciate nursing until I couldn't do it. He still needs high calorie the majority of the time, so it is fortified bottles during the day. But not having to get up and warm a bottle 3 times a night is great! He "talks" and blows bubbles. He chews on his hands, maybe teeth? The heart thing over shadows everything else, I forget about the "normal" baby stuff. He has an appointment with his Pediatrician on Jan. 3 for more Synergist, 6 month well baby visit, and 4 month immunizations- we are a bit behind. We wish you all a safe and blessed Hoilday Season, Loves!

Neleh and Johnathen conversation

We are driving along and Neleh and Johnathen are chatting it up in the back. Johnathen starts to talk about The Beatles, he is a huge fan. So he was asking about who was still alive, their songs, things like that. Then he says "I want to be a Beatle" Neleh chimes in with "Ona be a butterfly". Oh she makes me laugh! It is brief times like this that make it all worth it!!!

Oxygen and the New "Normal"

So after having Severin totally off O2, and seeing him turn really blue when he cries, I reworked the plan. He was on 1/4 liter. He obviously can not do cold turkey. I decided to slowly wean him down. He is now on an 1/8 liter. His sats are hanging around 77-83%. When he starts hitting high 80s low 90s then I will decrease him to 1/16 then 1/32. By that time he should be able to do room air. His body is still healing. In my gut I just can't have him be that blue if I can prevent it with a little O2. AND he started coughing on our way home from Primarys. Its not too bad. I just pray Synergist really works! He is getting back to his happy self. Today he even giggled when we were snuggling. It is so good to see him coming back around. This is again our NEW normal.

Surgeon follow up 12-15-10

No more oxygen!!! Well at least not all the time.
I know this is the goal we wanted. That is all good, fine and dandy, BUT I am freaking out. I woke up this morning to his alarms going off because he was Sating 68 %, his O2 was blowing in his eyes. I don't know how a few hours drive can make him ok to not need it anymore. The Cardio was the same that saw him after the last surgery too, and wanted him off O2 then. We all know how that went. Thom wants him to be "normal" but he is not normal. His sats drop when he cries. And he gets really blue/purple. They said he can have O2 at night or whenever I SEE he is more blue then usual. I'm so afraid I am going to miss a warning sign. It is just going to take me some time to get comfortable. I still have the pulse/ox so I can do spot checks on him. Yesterday was a turning point for the kid. He cried only when he was hungry-don't we all. He didn't act like he was in pain. His appetite is back. He gained 4 oz in a week. He now weighs 13.6, he lost over a pound after surgery. He doesn't want to nurse at all. I think it is ok because he probably needs the extra calories. I'll keep trying and maybe that will come back too. It just makes for exhausting night time feedings. He doesn't like to wait for the bottle to warm but he doesn't like it cold either. I tell him the solution is to nurse, its quick and warm but he just doesn't get it. Silly boy.

Hanging out for the echo. He watched the screen like he knew it was his heart he was looking at. His heart is not functioning at 100% but it did improve since the last echo. He will stay on blood pressure medication. Not lovin the EKG. Those stickers really stick! He is still dealing with the Post Traumatic Stress of the hospital stay.
Hanging out with Dad waiting for Bonnie and the Cardio. Look at that "nutrition" as Dr. Kaza calls it

Update on the first week back home

Severin is doing better everyday. He and Neleh are in a competition to see who can throw the most fits in a day. So far Neleh is winning. He came home on 1/4 liter of oxygen. He went into surgery on 3/4 ,so improvement already. He sweats like crazy when he eats, screams and sleeps. So pretty much all the time. He has a follow up appointment on Wednesday. They will do an echo again to check the "decreased function" in his heart. They expect it to heal itself and return to full function. It was mild and from what I have been told it is in his ventrical septum- which he doesn't have so I'm a bit confused. One thing you do NOT say to a heart mom is "decreased heart function" it makes us think bad thoughts. He is on blood pressure medication, lasix, asprin and tylenol. Not bad for what he has been through. He would love to be on my lap facing forward with me patting his belly, always. Unfortunately life doesn't always afford us those luxuries, but I do it as much as possiable. I will love to have a rountine again.

Home again, home again jiggity-jig!

By HOME I mean not at Primary Childrens, drop off perscriptions at the pharmacy, take Johnathen to school, go to the Peditrician for Synergist shot(for RSV), take a nap, get Johnathen, pick up perscriptions, have FHE in the form of decorating for Christmas. Severin was alittle freaked out when the kids were yelling he was home but then he realized it was just his peeps and calmed right down. He sat in the recliner with Johnathen and watched cartoons. He was so excited when I put him in his bed to nap. He just smiled and looked around like the lost was now found. Oh the joy of having all the chicks in the nest!!!

Almost done with IV antibiotics

Severin finishes his last dose of antibiotics at 4am on Sunday. Then they will monitor him for more fevers or seeming to be sick. Thom went and hung out with him today. I took the kids to two family Christmas parties. My parents came to stay the weekend with us and the kids have loved every minute. Severin will get their undivided attention tomorrow. Thank you for your prayers!

A good day

Ok my kid is damn cute! When I came in today his was laying in his bed looking around. When he saw me he smiled all over. Then we hooked him up with a Bumbo seat (yes it is purple but whatever, he had pink blankets today too) and a bunch of toys. He was happy. He sat there and played for 45 mins. I was so glad to see him comming back around to acting like my baby. It has been a rough week. I left him tonight falling asleep in the loving arms of his Tech Margarita.

Pictures!!!

He will behave for a moment in the swing while watching Mickey Mouse Club House. Yesterday was the first time he didn't wake with a startle and then start screaming. He looked around for a moment realized where he STILL is and then starts screaming. I came home last night. I just couldn't do the 2 hours of sleep again and then deal with a very grumpy baby all day. My kids piled in around me when I got home and by morning they were all in bed with us. Neleh tells me she"needs" me that means she wants to be held. But I think all the kids "need" me, and Thom too. I'm going to come home at night until Severin can come home. I feel guilty leaving him, but guilty leaving my other three and Thom. And from what they say he is not going to be any easier when he comes home. It takes a few weeks for the pressures to equal out. This is why he is so grumpy. He has to be sitting up all the time. I can't even imagine the head ache he feels. It is instant crying when he is due for more tylenol. I cursed us by saying he would be home on Monday, so I am not going to say the"H" word until I have him in the car and on my way. But I will say he needs 7 days of antibiotics and they started on Sunday. You can do the math.
LOVES!!!

Wow my 100th post I wish I could say we were going home. Severin is responding to the antibiotics. Now we just wait for the bug to be really gone. My thanks to all of you who are filling in for me with my family while I'm away.