Free for a moment...

On Sunday Severin pulled out his NG tube while I was giving him a bath-in the sink. I thought it was probably out too far to just stick back in and he has only been needing it for continous night time feeds, so I let him be free of tapes and tubes for a while. He still needs O2 so that was a bit of a pain to keep in his nose without the stickers. I wanted Thom and the kids to see his face when they got home from church. This pict. is a bit of a mug shot, but hey I captured a rare moment.

Nursing....sort of

On Monday just for kicks I tried to nurse Severin. He looked at me like I was doing so many,many things wrong. So I figured he was just not ready yet. The Nurse on Tuesday said bottle feeding is an opposite tongue action to breast feeding, I thought maybe nursing is further away then I wish. Then this little guy never ceases to amaze me! He has been waking up acting hungry at night. I didn't have a bottle ready for him this morning and he was not wanting to wait. I offered all I had to offer. Severin latched on and nursed for about 5 mins! It was 5am and I wanted to yell in the street! When the OT came today I told her about his accomplishment. She was so excited. We revamped his feeding schedule. He now eats a 65cc bottle 5 times during the day, at night he is on 22cc per hour for 6 hours, and nursing on demand through the night. He has to maintain a certain amount of ounces and calories. The goal is full oral feeds, bottle or nursing, no more continuous feeds so no more NG tube. I want him nursing all the time before his next surgery. For what it is worth -with scale differences in mind- the OT weighed him last Weds. he was 8.1, today he was 8.14! 13 ounces in 9 days! What ever his "real" weight is, he is gaining, and that is GREAT! We will be setting some weight "goals" next week with the Pediatrician. I hope last night wasn't a fluke, and he nurses again tonight.

He is just so stinkin' CUTE!!!

Severin James Quist August 21,2010

Severin ate the whole 55cc!!!!

Last night Severin ate a full feed. He did it again one time today. The feeding before I asked him to eat more then an ounce, and then he did! I love it when my kids obey. When he can eat 55cc and not get too tired then we can try nursing. I was so excited I was crying and I called Thom-who was on his way to his sisters in Wyoming- he too was so excited he missed his exit. Oh my sweet boy the joy you can bring us by doing the simple things!

Bottle feedings coming soon

Due to MY adventure last weekend Severin was not able to start his oral feeds. Until today. We went to the Pediatrician, Teresa came to be the pack mule and carry Severins monitors because I can not lift more then 15 pounds. And all his crap is more then that. He weighs 8.2!!! He had his NJ pulled to his tummy, then an Xray to check the position. Tonight I had the Home Health Nurse come and make sure I placed his new NG tube correctly. I did it on the first try and only made Severin purple a little. The new NG tube is smaller and I was able to put it in the other nostril, and tape it to his face better. He is on 18cc continous feed for tonight. This will be the last night I can sleep. Tomorrow he will be on the every 2 hour schedule 'round the clock. He will take 26cc from a bottle, or as much as he can and then NG tube the rest. My Mom and Morgan are taking care of him tonight, so I can sleep and recover my own body the best I can. I had better get to sleep, or my mom will get mad. Does that sound like I'm 8 or what?

Angee update

I know most of you check this blog to see how Severin is doing. Some of you may be wondering "what is Ang doing?" so here is a run down of my week. Monday I had another one of those really bad gas pains. Like the one I had when I was pregnant. I've been having these more the past two weeks, but I'm a gasey gal so it would usually, well, pass. Monday it did not so I made a Dr. appointment on Tuesday. I wanted to make sure I was not contagious, and get a better antiacid. I do not have time for it to be anything else. Labs say I am not contagious-great- but I have "clotting factors" which could be from having a baby or it could be blood clots in my lungs. What the...blood clots? Off to UVRMC for a CT scan. The contrast blew out my vein, ouch! son of a... I had a cute puffy Popeye arm but no blood clots-great. Dr said maybe gall bladder- I do not have time for gall bladder, but we'll see when more labs come back tomorrow. Weds was a PCMC day with Severin a good one at that! Dr. calls when I get home and asks how I am, I said a little pain still but ok. He tells me I am more sick then I think I am. What? Lab work shows pancreatitus and decreased liver function. I need to get my gall bladder out ASAP. Seriously what the H.... This does NOT work with my schedule. I was admitted on Thursday night, for surgery in the morning. Friday was NSP Lagoon day. My kids have had such a crappy summer and they have been looking forward to Lagoon, I was NOT going to let them miss out just because of my stupid gall bladder! I made Thom take them. My parents came to the hospital with me. Severin was left in the very capable hands of his Auntie Teresa. Before surgery I was cracking jokes and chating with everyone, like I do. My Surgeon thought I had already been given a dose of versed, no this is my regular funniness. He was probably glad to get me knocked out. Surgery went well. I had hundreds of stones in my gall bladder- we have a picture- yuck! The pancreas and liver looked good. Afterwards I slept while my parents watched, super boring I'm sure. I came home Friday night. Teresa brought Severin home, it was really sad to come home and not have my babies there. My parents hung out until my neighbor and friend, Megan came over to babysit us. It sucks now Severin and I both need a babysitter. Megan stayed through the night, getting up with Severin and giving me my pain meds on a schedule. What a TRUE friend! Thank you Megan. Thom and the kids have went to do my cleaning gig this morning. I'm feeling pretty good, like I did too many sit-ups. My parents will be here shortly to babysit us again. So many angels and the words "thank you" just do not seem to be enough. Thank-you!!!! And moral of this story -there is no such thing as a constipated fart, it's probably something else. All my Love!

Severin passed his swallow study!!!

We had a height & weight check today. He is 8 pounds and 22 1/2 inches. Yeah! Then we were on to labs, THREE pokes later they had barely enough blood- and this was the IV team again, he is really hard to get to bleed. He was pretty tired from that cry fest so I didn't know how he would be for his swallow study. I put him in the little seat, gave them the bottle nipple we have been practicing with. He started to suck and swallow like a champ! I knew he could do it. He is such an amazing kid. Tomorrow the HH Nurse will pull his NJ tube to the NG tube position. He will do his 18cc per hour continuous feed for 24 hours. Day two we can start the oral feeds 26cc every two hours anything he can't get in through his mouth he can eat through his tube. Day three he increases to 55cc every three hours. WHOO HOO This is more work but he is becoming "normal" and closer to nursing. Now he is going to feel hungry and barf. Oh his infection was a stitch abscess. He is still on the antibiotics, but it's looking good.

Oxygen chasin' -it's a heart baby thing

Severin has been oxygen dependent since our Saturday adventure. The NP isn't sure if the infection has anything to do with it or if it is just getting to that time. I am constantly adjusting his oxygen. Higher when he fusses lower when he calms down. Yeah not a lot of sleep here. He has been more fussy, but I think he is just ticked about people hurting him. No fever, maybe it has something to do with the spinal fluid, but I don't think its the infection. He is on antibiotics, and his incision is less red, and when your kid is light grey, red is really noticeable. He will see the NP and Surgeon on Weds. before his swallow study. Wish us luck on Weds.

ER Again

So Severin had another ER adventure yesterday. Thankfully these have not been critical. Thom and Morgan noticed his incision looked infected when they were getting him ready for the day. I called the on call Cardio and of course they do not mess around with these heart kids and wanted to see him in the ER ASAP. The complication with infection in a little one is that they can't fight as well so it is common for infection to spread. They needed lab work, IV team came to do the draw-Severins veins only like the IV team. After 5 pokes, one IV started, one blown out vein in his hand, lots of "digging" and no blood for labs, they paused. Severin was hysterical. By this point Severins O2 sats were in the 50s, he was very blue and I was pissed to put it lightly. I picked him up and told them they can wait for a bit. I have come to grips with Severin being in pain for the greater good, but just plain old dumb ass I can't handle. I didn't know if I would be able to reconize when Severin was "bluer" then usual but after yesterday I know exactly what he looks like when he isn't getting blood flow. I know the IV team was just doing their job, but their job includes a person that they need to monitor. That was too scary. I did take them up on their food offer this time because I hadn't ate since breakfast and I was going to eat my arm off. I graciously accepted and scarfed down a PB&J uncrustables, milk, cheese&crackers, and 2 apple juice cups-did I mention I was hungry? On the final poke they were able to get enough blood for a CBC-to check his white blood cell count. They called the on call Cardiothorastic Surgeon to re open his incision and do a culture in the infected area. Protocall when an infant is in with an infection and they start antibotics, they also have to check urine and spinal fluid for infection. I will let you figure out what Severin had to endure next through those proceedures. He is a brave little boy. Due to all the trauma he is now back on oxygen all the time- he seems to be doing better and might be able to come back off soon. He came home on antibiotics. He peed on his clothes so he did get a fancy new onsie to come home in. I told the Charge Nurse that Primaries and Walmart have the same time vortex, where you leave hours later and spend an excessive amount of money, and have no idea what you have been doing the whole time. Eight hours in the ER, I did get to see Shark week on Discovery channel- twice. On the way home I saw a shooting star, I made the wish that Severin will live to be an old man. I hope this to be true. Lots of loves!

Surgical Follow up Aug. 4

The follow up helped to mellow me out. They answered all my questions. Bonnie the NP said to unplug him from the pulse oximeter, it would make me crazy to watch-and it was. She said carry him around the house like a normal baby. She wanted me to get confident in looking at Severin, not confident in a machine. I can use the machine to validate what I see or at times I'm not looking at him (like at night). The Cardiologist said it was ok for him to desat for 30 mins, before we need to rush putting oxygen on him. He only needs oxygen when he freaks out. Severin will out grow his shunt, and when he does he will continue to become more blue. It is a process, not immediate. She said I will know- I hope I will know. We had to get lab work done. Severin promptly turned purple and held his breath- freaking the lab folks out, they called the IV team, and I waited an hour for them. When they poked him he wrinkled his nose, and then fell asleep while they worked to get enough blood. He is such a manipulator already- I think he likes the pretty Nurses. When the Home Health Nurse came today to weigh him he was 7.9, all scales are a little different but hey he is growing. I tried unplugging him today and it was definitely a better day, beep free! He did just fine.

Morgan snuggles

When I was posting the kids holding Severin, I realized I didn't have a recent one of Morgan. That is because she is ALWAYS holding him. Morgan has been a Super Hero the past few weeks. She helps out so much with Johnathen and Neleh, and she is great at holding Severin. What a great BIG sister! I hope this is all she waited ten years for.

The new and improved NJ tube- I waited sooo long

This NJ is a bit bigger, hopefully won't clog as easy. I really wish we could loose it all together. But I know we need to get a chubby baby too. If he has been getting feeds to his tummy since Friday, maybe we can transition to oral feeds easier. We have a surgical follow up appointment tomorrow.

PCMC ER =The worst Hotel EVER!

I have been wanting to post for a while, but I can't seem to get out of Severins sight with out him turning purple. Friday when we woke up Severin had his NJ tube pulled down to his chin. I called the NP and I didn't think it came out too far so I stuck it back in and super taped it to his face- Thanks to Leesa who came over for a visit during all this and calmed me down. The break down everyone has been wondering when it would happen, well it happened Friday. Thom came home from doing ALL my to dos, to me crying holding Severin. I couldn't stop. The best way to describe how I am doing is -it is very stressful to be Severins mom. Thom took over, put me in the tub and then to bed. He stayed up all night and watched Severin sleep. The kids came home on Saturday, that was good they really love their brother. I do not sleep at night, because Severins alarms keep going off. I sleep in his room with my glasses on so I can watch the monitor, and see him-I also have a 40 watt "night light" blazing. Sunday I started to feel like I was getting a groove. Severin is getting more oxygen dependent, just a small amount. Monday my day started at 5:30am I needed to do my cleaning gig while Thom was home with the kids. Severin had a Pediatrician appointment just a meet the kid he has been reading a novel on. Severin weighs 7.6. That morning I had a hard time getting his meds in through his NJ tube, but I flushed it and it was ok. I asked the Dr. about the amount I could flush with, he said 2-3cc would be ok. The trouble with these heart babies is fluid over load with empty ( no calories) fluid. Their hearts can't pump it off as well. So when I got home I flushed his NJ again. By 9:00pm med time I couldn't get anything to push through his NJ. His milk feeds were even coming out, I changed his feeding tubing at 4:30 so he probably hadn't ate since then! The home health gave us some declogger stuff that didn't work. I am in contact with the charge nurse at PCMC, and the Cardio Resident, they suggested I get it checked out, BY the way UVRMC didn't want to touch him so I left to PCMC at 12:30. While there the Xray looked like his tube was in his stomach. They could compare the Xray from the initial placement. By 4:30am it is decided it could not be unclogged, and needed to be replaced. BUT it had to be replaced by a Radiologist who didn't start his shift until 8. They started Severin on IV fluids -it had been 12 hours scince he last had anything. They gave me two blankets, only slightly thicker then a sheet, and I snuggled in using one as a pillow, on a very rigid triage bed. Severin got the Deluxe contiental breakfast-IV fluids, and I got a cup of ice water. They did offer me juice or a banana, but I have become as superstitious as they are and I thought if I accept food from them they will want to keep me longer. We were able to go by 9:00. I had a Dentist appointment I didn't want to miss. Thom and Johnathen did too, so we traded off and Thom took the boys home. I have slept 6 intermittent, one hour intervals since 5:30 am yesterday. I'm tired!
One more bit of sad news, our heart friend, Annie, passed away on Sunday. She fought for four months. None of us know how long we get our heart kids. We hope for a long life. I am reminded of a concept my friend Kamie shared with me, "what did you do with your dash?" Our birth day and death day is seperated by a dash. The concept is to make the best of your dash, no matter how long or short it is. So what are you doing with your dash?

Our Boys

Johnathen can't get enough of being Severins big Brother. He washes his hands and holds him for a while, but he doesn't like it when he cries.

Neleh sushing Severin

Neleh loves to be the mommy to Severin. She kisses his feet and head. He doesn't seem to mind. What is the deal with another naked Quist kid? It's natural.