2 Brothers Layne

We had picture day today. One of the staff here said she would be willing to take pictures of Jonah if we would be willing to let her use Jonah for advertisement. So far this weekend has been a up and down one. We have found that when Jonah gets his bi-daily dose of Viagra, it's called a different name but I always forget what it is called, his heart rate increases and he becomes restless for about 30-45 minutes after the drug has kicked in. We get to have extra cuddle time two times each day. LOVE IT!!! All-in-all Jonah had a pretty good day. Nothing big happened. He slept a lot, didn't really nurse very well, but we had a good time hanging out with one another.

Jonah is leaving the NICU for the second time!!! HURRAY!!! Can you believe that Jonah has been alive for 170 days, and has been hospitalized 100% of time. We are rooming in again, scary big time. I think Tanya is a bit more on the comfortable side than I am. Jonah has been great this evening. Grandma and Grandpa Selman came by today and hung out for a few hours and to love on Jonah. It was a lot of fun. Tomorrow the Viagra will start again, a smaller dose and every 12 hours instead of 8. Jonah slept all day today and was quiet. The Dr. that read Jonah's echo has said that there will be no changes to Jonah's medications without her approval!!! This just shows how serious the co pulmonale is. So tomorrow we will be to guess what Jonah needs as his dose pf viagra.

Today was a very hard day for the nursing staff and Jonah. Jonah's heart rate was up in the 220 beats per minute, running a fever, and was very angry/irritable. The doctors were very concerned because of the new discovery of Jonah's enlarged heart. A CBC and CPC, blood tests to check for electrolytes and infections, were ran to see if Jonah was coming down with something. In the many changes of medication that Jonah is experiencing they decided to take away the most recent addition, Viagra. Once the drug has worn off, Jonah's heart rate returned to an acceptable rate, his temperature came down, and he was able to rest. Tanya said that when she arrived this evening Jonah would start to fall asleep and then his body would start moving again. We think that The drug has increased his heart rate which would be like Drinking a Energy drink or something. They are going to reduce the dose of medication and try again on Saturday. The medication did a great job in its desired ...

Jonah has has a rough day. He spent most of the morning struggling to breath. At 2:00 it was decided to give him another dose of Lasix to flush out his lungs and make it easier to breath. When I arrived at 4:45 Jonah filled his diaper which then leaked out into his bed. The diaper weighed 260 grams! I believe that this is a record for Jonah. Due to his inability to breath Jonah did not take a bottle today. He did, however, nurse for 20 minutes at 5:00.

Today was hilarious!!! The NNP's waltzed in today side-by-side, joking that they were attached at the hip. They continued joking that they had to fight over who had Jonah this morning. One joked that she had a bunch of bruises, she lost. Sorry Diane!!! As for Jonah's Echocardiogram. It seems at every turn for the worse Jonah takes it. He does have Cor pulmonale, which is an enlarged right side of the heart. Here is a link to see what it means: http://images.google.com/images?hl=en&q=cor%20pulmonale&um=1&ie=UTF-8&sa=N&tab=wi You can also google "Cor pulmonale" and click on Images. If you look at the bottom right, right for the picture left if you are looking at it, ventricle you will see the muscle has thickened or enlarged. This is due to the extra load the heart has to carry. Pulmonary Hypertension, High Blood Pressure in the Lungs is the cause of Jonah's new problem. The blood vesssels in the lungs are very rigid and constricted, i...

We learned how to Skype with Jonah. We had to turn the sound off so Jonah did not get over stimulated, my brother snapped this photo while we were video chatting with each other. Jonah was able to look at the screen for a few seconds at a time once in a while. I bet they took 10 or so photos before they captured one this good. It was pretty fun. We tried video chatting with a couple of other people with no success from Jonah or a bad connection. Hurray for technology. Today Jonah as been nippling more and more, sort of. This morning he nippled 40mLs and averaged the day with 20 mLs. With his lowest nippling being 8 mLs. We are hoping this is a sign that Jonah will not have to have a G-tube, but only time will tell. It was very enjoyable hanging out with Jonah today. He was just starting to wake-up when we arrived this afternoon. For the very first time in his life Jonah was able to nurse with out using a nipple shield, a plastic cover that fits over the nipple and mimics the...

Holy crap!!! what a crazy weekend. We are very glad it is over. After we arrived home today, we laid down and took a giant nap, phone calls at our night tables didn't wake us up. Jonah is proving to be a little angel, and more stubborn than both Tanya and I put together. He is doing well. He was given another dose of Lasix today. This is the drug that dumps all the excess fluid from his body and gets it out of his lungs. This looks like it is going to be a weekly occurrence on Sundays. Which has its positives and negatives. More positive than negatives. This plays a huge roll in why things seemed so difficult over the weekend. Jonah couldn't breath very easily. He didn't have one big diaper but had several small diapers that together combined well over the 200 gram mark. On to another week. We are taking things one day at a time. I wake up every Friday morning to Tanya singing, "Friday is my favorite day."

Today has been an interesting one. Last night Jonah slept pretty well. I slept really well... if you were to ask Dave, too well. I woke up the first time Jonah cried but every time after that I slept right through it. Dave reports that he awoke about every hour, changed Jonah's diaper a couple of times and rocked our little boy. Then Dad had to get up at 5 and left to go do CNA clinicals. That left me and Jonah to hang out for the day. It went alright, however, when Dave showed up at 3 he was very concerned. I wasn't doing real great. Over the course of the day I started to feel very overwhelmed and inadequate. It was as if I was caught up in a whirlwind of tubes, wires, beeps, and medications and I could never quite catch my breath. I'm hoping that as we continue to room in on the weekends I'll start to get my feet under me and gain a bit of confidence.

Tonight is a new adventure... rooming in with our son. Hooray! It has been pretty calm thus far. More details to come!

Tanis, since changing major to nursing I have told Garco that I am not coming back to work for them this year. I currently do not have a job. I am in a CNA course in preparation to work as a CNA. Also I will be home taking care of Jonah when the glorious day arrives when he can come home. For today Jonah has had a GREAT day. Jonah slept from 11 pm last night to 5 pm, he was up for about 15 minutes, and slept through to around 7:30 am this morning. The nurses report Jonah was a very pleasant day, He only got fussy when they changed his diapers. They were worried on the day shift because Jonah wasn't urinating very well. A good sign tonight, Jonah had a wet diaper that was 101 grams. Tonight when i got to the hospitals after calss I walked in the room and the first thing the nurse said to me was, "Tanya is out and has been since 8 pm." She deserves the rest. She works so hard on pumping, working, learning to care for Jonah, late nights and early mornings. SHE IS ...

Not much is different. We had a meeting with the Doctor and Nurse Practitioners today. It was good to know that every one is on the same page. We asked if we could start rooming in with Jonah, as soon as this weekend. They felt that was a wonderful idea. So, Friday night and Saturday night and all day Sunday we will be with Jonah kind of on our own. A nurse will come in around normal care times to supervise, to answer any questions, and for support if we need it. This will help us determine where Tanya and I are in preparation to take Jonah home. THIS DOES NOT MEAN THAT JONAH IS COMING HOME ANY TIME SOON. To let everyone in on what the plan is for Jonah. From the Doc's: Jonah is at a cross road. We now have to wait for him to choose a road so we know where to go. The two paths are as follows: 1) Jonah will increase the amount he is nippling from 5 mLs of the 580 mLs which is about 1% to 60%-70%. If this is the case we will stick with a NG, nasal gastric, tube for a sh...

Answers: Tanis, in answer to your question of which program Tanya uses to scrapbook I believe that it is PhotoShop. I have played with it a bit, it kind of is a tough program to get used to but you can do some adorable things with. Tanya's sister is teaching her how to do. It is kind a fun because a few nurses are planning on buying the program and starting to scrap on the computer because of the convinience of no mess to clean up and its all on the computer. Tyson: We are at McKay Dee hospital. We live in Ogden. 42 blccks north of the hospital. Tanya said one time that it is five miles away. Yet it takes 15 minutes to get there on a good day. Tanya drives to Brigham City to teach, it is a commute time of 20 -30 minutes each way. The school year is almost over, only about 17 more weeks to go. Jonah has been very pleasant today. Mom had a little mishap this morning on the freeway that shook her up pretty good. As a reslut she spent a little more time with Jonah today. W...

Mommy's two favorite boys! It is always nice to be together as a family... even though that means spending the evening at the hospital. Jonah is sporting a new pair of pjs he was given. Pretty cute! Jonah weighed 9 pounds even and 21 inches long tonight. He has really grown since September. We are hoping for another meeting with the doctors this week to attempt to get the WHOLE team on the same page. This would eliminate or at least minimize the number of changes that are made when different doctors or NNPs are on.

This is Jonah's first Valentines day. Tanya Insisted on dressing him up in Overalls and a red Onsie. It was a lot of fun. This is Jonah's first Halloween. Cute, cute, cute!!! This was a Birthday Present for Me!! Thanks Morgan!!! So about the no pictures, I can sense that some of you are getting upset with us for not posting pictures the past few days, sorry Brandee. We have been using our old laptop at the hospital so Tanya can do some digital scrap booking, I really think she is enjoying herself with this. Much thanks to her sister Morgan for teaching Tanya how to do this therapeutic and time saving art. For my birthday on Friday Tanya asked Morgan, her sister, to create a couple of scrap book pages for me, they are amazing!!! I will try and see if I can post one of them and some that Tanya has made. I almost cried they were so amazing and memory prevoking, I was tough and said I had something in my eyes. I don't cry, I know, righ...

Jonah is doing well today. He eat and sleeps, with maybe about 3 hours of awake time occasionally. This is what the doctors are hoping for. The medications were changed yesterday, so we will wait about a week to see if they will have to adjust them again.

Tonight has been a good one for our family. Jonah nursed for 32 minutes...WOW! That is a record. Progress is slow but it is progress none the less! Thanks for all your support and love!

Jonah slept most of the day away for Dad this morning. He did not want, and we say want because right now it is a reflex to suck, when that reflex goes away they don't want Jonah to have an oral aversion. If the oral aversion is found in Jonah he will not want to eat or have anything put in his mouth, big time bad thing. As such, Jonah is on a feeding schedule every three hours if he wants to eat great let him eat what he wants, if he does not want to eat don't force him. In the evening Jonah does a great job nursing for Mom. Jonah weighs 8 lbs 12 oz.

I thought it might be fun to give all our readers a glimpse of the progress we've made in the last 5 and a half months. These first two pictures are Jonah and his stuffed animals during his first week of life. Here is Jonah tonight with the same animals! HUGE Difference! Here is a picture of me and Jonah at four weeks old. Here is Jonah tonight. Today was a good one for Jonah. No changes to report!

Only one real change today... how Jonah is being fed. The developmental specialist is concerned that Jonah's eating experience is not turning out to be as positive as it needs to be in order to convince him that eating is enjoyable. If he isn't sold on eating we'll be in trouble in a couple of months when his sucking reflex disappears (it does so in all babies around three months of age). So the plan is to accommodate Jonah's every eating whim. He will eat when he wants as much as he wants then we'll make up the difference during the night while he sleeps. The doctors would like to see him nipple at least 50% on his own during the day. We hope that this will be a successful venture for Jonah!

What an amazing day!!! Oh, boy, where to start!?! So this morning we woke up to snow, very wet snow, with flakes the size of silver dollars. What a wonderful surprise, our snow blower threw the snow like there was no tomorrow. Thanks Tanya for a wonderful Christmas present!!! Now, on to Jonah. What a special little boy. He is doing well. He is meeting the Dr.s expectations and doing very well. One Dr. commented, "It's a good thing he is so cute, or we wouldn't have been able to put up with all his trouble." We have started to be more involved with Jonah's cares, in that we are starting to learn how to listen to his lungs, we will also have to learn how to place a feeding tube and check it's placement, thicken Jonah's milk, give medications, give breathing treatments, and possibly other stuff. This may take a few months to get down but by the time Jonah comes home we will have mastered all of these tasks. We had another picture night. This was in...

Today is another day of little to no news. Jonah weighed 8 pounds 9 ounces and nursed 3 times today. The doctors are increasing the calories they add to Jonah's bottles to help him continue to grow.

Today was a good one for Jonah. He nursed 3 times today and did very well. There were no new orders written today.

Today has been a bit of a roller coaster ride for Jonah. Last night at about 9:30 Dave looked at me and asked of the nurse had listened to his lungs because something just wasn't right. Then this morning I got a phone call from Jonah's nurse to tell me that Jonah had had a rough morning. His lungs were filling with fluid again and it was time to administer some good old Lasix to help flush out his lungs. About an hour later he had a 200 gram diaper and he was feeling much better. We had a "Care Conference" today with the wonderful staff at the hospital. We were given a full update on Jonah's progress and a heads up on some possible things coming. I worked up the courage to ask for a ballpark figure as to when Jonah would come home. I was told that they are not yet willing to even guess at when that might be... AKA... Not any time soon. SIGH. Oh well, at least it seems that at the rate we are going RSV season will be over before he comes home and we'l...

We are pleased to report that Jonah has officially had 3 really good days in a row!!! Also, the past three nights Jonah goes to sleep around 10 and sleeps until 5ish! Wouldn't that be a great schedule to keep him on when he comes home. Thanks for being willing to speak up and let us know who is keeping tabs on our family. We sure appreciate your support!

What to say about today!?! Jonah seemed to have a very very good day. Here is why, he was able to get some rest, have some awake time - which he played with nurses and the Developmental specialist, had a great time in the bath with Dad, enjoyed cuddle time with Mommy, nursed a full feeding at 5 pm, and a half feeding at 8 pm. We are so very grateful to all of you who made yourselves known; it is breath taking to us and very humbling. Jonah is so much fun to play with and watch him as he investigates his surroundings. Jonah still loves his bath. I hope you all will enjoy the video. It is not much to watch but it may help you feel more involved with the day-to-day cares. I asked Tanya to record a nasty diaper change, but she said it wouldn't be worth it because we could not transmit the smell. Again, for those of you whom may have missed yesterdays blog, we would love to see how far reaching Jonah's friends are. Please leave a post to let us know where you reside. Thank y...

This is Jonah hanging out in his new ride. We got this over the summer from a yard sale for $1. Jonah seems to really like it. His favorite part is that it vibrates and rocks! Jonah has again been taken off the high flow nasal canula and put back on a regular canula. This is a step in the right direction. He has had a pretty good day and he nursed full feedings at both 5 and 8 tonight! I am very curious as to how far reaching Jonah's "Fan Club" is. If you are like me you are content to avidly read a blog but too self conscious to make a comment. Please step out of your comfort zone and post a short comment with your name and your connection to our little family or how you found us. THANKS a BUNCH!

Today was a pretty chill day for Jonah. He was very restful and pleasant for the nursing staff today. At the 5 pm cares Dad was able to take care of everything by himself, including a bath. Kinda scary but it was fun. At the 8 pm cares Mom was able to try and nurse but Jonah did not want to put forth the energy to. Jonah weighs 8 lbs 5.5 oz and is 20 inches long

Sorry... no pictures today. Jonah has been such a good boy today. I spent the whole day at the hospital and gave him every opportunity to nurse. He took me up on it 3 times. It was so nice to spend some quality time with our son. We spent a couple of hours taking a nap with Jonah laying on my chest. Then this afternoon we read story books and gave Jonah a bath.