A cryin' shame

It's a shame hair this good is on a boy. Auntie Leesa came over and the pigtails just happened. Everytime I had the camera out to get a picture he would fuss. He must know we will use it for future blackmail. Oh he is so fun

No more OT! 10/27

Severin has been officially discharged for Occupational Therapy. He weighs 12.12. She thinks his development, muscle tone, weight gain, and feeding is all up to speed. We will miss Shauna but if he needs any OT after the next surgery she will come back.

Whew Hoo its not measles!

So when I got to Primaries yesterday Severin had a red dot rash on his face. I thought it must have been too hot for him in the car. It didn't get worse throughout the transfusion. Five Cardiologists and four Nurses looked at it, no one was too concerned. He still had it this morning and it looked like it was getting worse. When I Googled measles it said eye infection was a symptom - Severins right eye has been runny and a little gooey for a week. CRAP measles !? I called the Ped. and took him in. Its his reaction to a virus. He will probably always break out in hives when he has a virus. It doesn't seem to be bothering him but he is getting Benedryl. I do not feel like I can assume anything is "normal" with this kid. Oh and the Peds scale said he was 12.6 so I think it is safe to say he is over 12 pounds.

Another blood transfusion

My day started with a call from the Cardiologist at 8:30 am after another very UNrestful night sleep- Severin can not maintain his O2 sats if I paid him to. Dr. Su said Severin need to go to Primaries for another blood transfusion. Let me back up to his cardio appointment yesterday. According to their scale Severin weights 12.3 and is 24 inches long YEAH! He has went to 1 liter of oxygen as of Saturday, and even with that his sats were only 77%. Dr. Su wanted to know why. So Severin had an echo, this made Thom really upset because he wants to see his heart and this is the second one he has missed. He has some narrowing in his Pulmonary Artery where his BT Shunt connects so it is probably scar tissue- totally norrmal and not a big deal because after his next surgery it won't even matter, the BT Shunt will be removed and the PA will be replumbed. Which by the way his tentive surgery date is the end of November. We go back to the "thinking chair" maybe it is his red blood cells. Maybe they have not completely recovered from the circumcision blood loss. It has been six weeks since then. The red blood cells are the trucks that carry the oxygenated blood around the body, so an increased oxygen need can mean the trucks are down in numbers. We decided to do a CBC blood draw. That brings me back to today. Severins hematocrit (red blood cells) was 35 it was 40 six weeks ago when we left after his 2 transfusions. Thankfully he only needed one unit, and we were able to go to the R.T.U (Rapid Treatment Unit) and now we are back home. Now his count is 51 which is plenty high enough. Now he just has post traumatic stress to deal with. It is still a wonder where the red blood cells ran off to. Hopefully he will start making his own now. The CBC did prove he is working it is just not fast enough. The goal is to get him off oxygen before his next surgery date. Well I must go and pretend to sleep before my night job starts in an hour. Remind me later why I love being a Mom....

Just chillaxin for the echo

Severin was cracking me up. He is laying on a rolled up towel under his shoulders. They needed to get an angled view from the top. He just sucked on his bink, and fell asleep. Who says he needs sedation for his echo.

Chubbies!!!

Oh I love his chubby belly and thighs! I could just eat him up!

Severins "Going Home Outfit"

We did family pictures today. Severin was crying while I was getting him dressed. The thought came to me, when I bought this outfit I said it would be his going home outfit. I would take him home from the hospital in it ( I thought he would be there a long time) or he would wear it when he went home to our Heavenly Father. This is the only item I would allow myself to have for him before he was born. I am overjoyed to dress my screaming son in his head-to-toe OshKosh. He is such a gift to us. The faith of so many gave us this time with him. Thank you to all of you!

Grandma Sue and Grandpa Fred Mt. Pleasant Oct. 13-15

I was soo excited to get to go to my parents house. It was fall break for the kids and I needed a break from home life. We loaded the van. Severin has an oxygen concentrator now so I didn't need to bring O2 tanks. We were 1/2 way there, on the county line between Utah County and Sanpete County. I saw what I thought was dust in my rear view mirror. I tried to clean the window. Then the "low oil pressure" light came on. Oh crap ! I pulled over and called Thom. The sign said Mt. Pleasant 18 miles-so close but so far. The van was smoking from under the hood. Thom decided he would come and bring us more oil. I decided I would at least look under the hood. Well that would have been good IF I knew how to unlatch the hood. I stood out in front of the van feeling around in vain. A nice young man stopped by and asked if we needed help. He promptly found the release latch and the inside of the hood was sprayed with oil. No oil was on the dip stick either. Yeah I'm not going anywhere. I called my parents and asked them to come and tow us home - Thom was on his way I couldn't get a hold of him. Thom and my parents got there about the same time. It was too dark to tow through the canyon so we loaded the TWO vehicles with all the stuff I packed and the people. We went to Mt. Pleasant and had dinner. Thom had a sleep over with us, and in the morning he and my Dad took the van to the shop. A small fee and the van is back on the road! I'm so thankful we were not hurt and I didn't keep driving and blow the whole engine. I didn't stay in my pjs every day, I was wearing jeans but Severin barfed on me. This is the back porch to the cabin. We were sad to leave.
We wondered who Severin looked the most like. This is a picture of my mom- they look a lot alike, especially the hair.
Grandpa took the kids on many wheelbarrow rides, and they loved every minute. I didn't even see them for two hours! They were outside "helping" my Dad. Every so often I would hear Johnathen say something to my Dad and he would laugh. They were so dirty at the end of the day they left a dirt ring in the tub.
Severin was "taking" to Grandma. It was so relaxing to have my parents helping with the kids. Severin was always held and the other kids were always entertained.

The things we do to our kids

I picked up this hat before he was even born. I put it on him and took him outside to do some yard work.
The kids were going through the Halloween costumes and trying them on. Severin didn't miss out on the fun.

Weight Check 10/13

Severin gained 5 oz this week. He weighs 11.3! He is a bit of a porkermashelly. He eats 5oz per feeding. Last weeks low weight gain made me nervous, so I called the Cardio. He thought it may have had something to do with the barf fest we had. He also wanted to see how Severin did on 1/2 liter of oxygen (he has been on 3/4). I turned his O2 down and dealt with how he did. It was not good. Every time he fussed even a little he would go blue, and his sats would drop into the 50-60 range. I didn't sleep that night, so after 24 hours we were done "seeing" how he does at 1/2 liter. Sorry Dr. Su you may have your degree in Cardiology, but I have a degree in Mommy, therefore I out rank. So at 3/4 liter we shall stay.

Weight Check 10/7

Severin only gained 2 oz this week. His eating schedule and amount have not changed. If anything he has increased his amount (more around 4oz/feeding). He is awake more often and active. His oxygen need has increased to 3/4 a liter now. That gets him to maintain 77-80% saturations. He is getting so smiley. He wrinkles his nose just before a big grin crosses his mouth. I love it. He thinks I'm really funny, and that boosts my ego. He has a cough now, thank-you Neleh! His OT thinks he looks great. We are practicing rolling, not because I want to grow him up fast, but just so he is progressed as far as possible before round two in surgery land. He will not be able to have tummy time for at least six weeks. Not like he loves it or anything, he'd rather be chest to chest. Thats it for now my friends, duty calls and by duty I mean doo ty. Change the baby, feed the baby, let the baby sleep and REPEAT over and over and over....

weight check

Oh I almost forgot the weight check this week. Severin has gained 6 oz! not as good as the past few weeks but still good for him. He weighs 10.12 and is 23 3/4 inches. He looks like fat man in a little coat in his newborn size pjs. I love his chubbies! He feels sooo good when he lays on my chest to sleep.

SMILES!!!!

The first two are his sneeky smile then I caught the real deal. Thom says his hair looks like Jimmy Neutrons, or possibly Conan O'brian. I think its cute.

On days like this

On days like today when almost everyone is barfing, the mountian of laundry is staring back at me, I wonder what would a pioneer mom do? I have loads of blankets for Neleh to keep barfing in and then another one to keep her warm. I have medicine to make us feel a little bit better. Oh and best of all I have indoor plumbing! Although Neleh thinks it is optional to use. I am thankful that this too shall pass. Thom and Johnathen are not sick yet. Hopefully we can take turns with no give backs.