2 Brothers Layne

Hallelujah and blessed be!!! Today, Jonah was full of smiles and silent giggles. No sound comes out of him, but his face and laugh show us otherwise!!! The nurse kinda gets upset when MOM and Dad are there because Jonah completely ignores her. This is great. She was joking with Dave when the front desk called to tell her he was there and said, "He can't come back today." good times had by all when Jonah is doing well. Jonah will have another echo on Friday as well as an Upper GI study, this is where they give him some Barium and see if he is refluxing, if he is they will also be able to measure how fast and how high it goes. SO... We are very excited for this, because WE CAN SEE THE LIGHT!!!! And feel its warmth. One thing we have grown to appreciate is our home. It may not be much but it is HOME!!! We don't have to worry about running out of propane and not having any heat in the trailer on a cold night. Thanks for all the extra blankets we have borrowed!...

Yet another good day for the Layne Family!!! Jonah has had a nice uneventful day today. He had an evaluation done by the Occupational Therapist and the Physical Therapist and tolerated it all extremely well. They were pleased with Jonah's development. Their only concern was the tightness of his hamstrings. They will set to work constructing a stretchin plan that will help to loosten his muscles. The doctors continue to ween every 8 hours on his flowlan. At this rate he'll be totally off of it by Friday! Jonah's nurse today realized that Flowlan is the last drug he is getting through his PIC line which means that ordinarily they would remove the line on Friday... but... Jonah is a very hard poke. Our nurse brought up this point to the doctors today and requested that rather than pull the line (which would have to be replaced before surgery) keep it and schedule his surgery for next week! The doctors were on board with that idea and tomorrow they will set to work try...

Look at my sweet sleeping angel! Thats right, he is off the c-pap and on a high flow cannula! Jonah totally appreciates this change and the fact that he doesn't have to wear that silly white hat any more. It seems that Jonah is getting back into his routine of "Play hard and sleep hard" Last night he slept the whole night. His nurse said that he even slept through his diaper changes and that she was absolutely board to tears. She was very glad that her Nintendo DS had a full battery and a bunch of games. I had the opportunity to meet a fellow NICU mom at McKay-Dee tonight. Her son Michael was born at 24 weeks gestiation and weighed 1lb 6oz. Michael is now 12 days old and is doing pretty well. But we all know that it never hurts to have a few extra prayers on your side so when you pray for Jonah tonight add little Michael and his family in there too!

Today was a pretty peaceful day for Jonah. He had some pretty good naps today, so much that dad was jealous. They are able to keep weaning on the ventilation settings, which means closer and closer to a nasal canula, starting off with a high flow and then once he weans down to under 1 liter we can switch to a regular nasal canula. Mom was able to bathe Jonah tonight and rub him down with baby lotion. Jonah loves this, especially on his legs, we worked with Jonah on infant massage and he seems to really enjoy it.

HOORAY for Super Jonah!!! He has had an amazing day! Things are going so well. They continue to ween on the cpap settings and Jonah may be switched to a high flow nasal cannula in the next day or two. That would mean that we could shed Jonah's lovely white hat and head gear. He would love that! We are back to the point of holding Jonah at our leisure and doing a major part of his care. Ahhhh, what a relief. Jonah woke up at 5 this morning ready to play and smile at anyone and everyone. He played hard all day. He refused to nap until 5 this afternoon when he finally crashed. I am writing this at 9:00 at his bedside and he is still sound asleep! His nurse may have a long boring night ahead of her! We so appreciate your concern and all the prayers that are said in our behalf.

Jonah was a bundle of joy today. With his smiles and giggles, we had a lot of fun playing with Jonah today. Last night the girls in Jonah's room, dubbed the Screaming Mimi's, had Jonah so irritated that He was moved to one of the isolated rooms. Not like to ones at McKay where we could slide a door shut, but there are only 4 beds in this room and it is much, much, more silent than the other rooms Jonah has been in. Not much has changed today. We are grateful to almost have our happy little boy back!!!

Today has been a very good day for Jonah!! Last night he slept all the night through. From about 10 pm to about 4 am and then after his diaper change he went back to sleep until 6 ish. The day nurse commented to mom tonight that she, the nurse, was disappointed because she didn't get her Jonah time because dad stayed all day and only left when Jonah was sleeping. Also, Jonah is officially off the Ventilator setting of the C-pap. He was previously on a rate of breaths, meaning that the c-pap was giving him so many breaths per minute to aide his breathing, today Jonah is doing on his own!!! He had some great big surprises for Mom tonight, some of the same surprises he gives to the nurses, well since the feedings have started. When Mom walked in today the nurse had just finished cleaning up a blowout diaper. The nurse commented to Mom that she had impeccable timing!!! Mom had a good laugh at that. About 5 minutes later as the nurse was handing Jonah to Mom she looked down an...

This is Jonah in a bouncer tonight. You can actually see his fat. he is very "dry" meaning that he only gained 5 grams yesterday on his weight. which is 5905 g. Jonah just chillin' while he is read his bedtime story. Notice the band around his head. Yesterday this was used to keep his chin closed, today it is used to keep his handle bar, extra long, c-pap in place. Today was a pretty good day for Jonah. The day nurse was able to play patty-cake, and some other games with Jonah which he loved. When Dad got here today, and Jonah saw him, Jonah let out an expression of excitement and a great big smile, as he can't squeal or anything still!!! This made dad feel very proud!!! The health care team is working on converting all of Jonah's meds from IV form to oral form so they can remove the IJ, intravainus Jugular, from his neck to simplify some the IVs in Jonah. We are very excited. In the last 2 or 3 days Jonah has come down from 40ppm, parts per million, on hi...

Meet SUPER JONAH!!! Today Jonah's nurse turned him into a super hero by tying on a super cape. The reason for the cape was to prevent Jonah from messing with his c-pap. It worked pretty effectively. He is up to 10 mls an hour on his feeds. His nitric oxide has gone from 40 ppm down two days ago to 20 at midnight tonight! They have also decreased the settings on the c-pap. Jonah's nurse today got him out of bed and played with him a while. She said he seemed to really enjoy it. Then when Mom arrived after school she got to hold Jonah too. He was soooo full of smiles today! It was wonderful!

The day stared out a little rocky for Jonah. Daddy got to hold him for thirty minutes before he started dropping his sats. At which point Jonah was returned to his bed and was given a chin strap. The strap helps to keep Jonah's mouth closed which prevents air from leaking out and thus helps the c-pap to work better. Through out the day his blood gases improved and things are a bit more steady tonight. Really the only other change today is another slight increase in his feeds. He is up from 5 mls an hour to 7. He has good bowel sounds and seems to be tolerating feeds well.

When I walked into Jonah's room this morning he was right in the middle of getting a new big boy bed. The nurse felt that the open warmer he was in was just too small now that he is awake and moving. So Jonah is now in the biggest crib in the entire NICU. He handled the move like a champ. CHeck it out! I got to hold Jonah from 2:30-5:00 this afternoon. I think Jonah enjoyed it as much as I did. He spent most of that time dozing off or staring out into space. It did my heart good to be able to hold him again.

This is the C-Pap you can see, it looks much different than one that a big person would use. The hat helps the nasal cannula stay in place and to keep it from falling off, Jonah is a master at getting things out of his nose. He really doesn't need any help. Today was a pretty fun day. When we arrived in Jonah's room this morning the nurse was holding Jonah's hands and talking to him. Dave went to the bedside and started to talk to Jonah and his eyes B-lined to find him. The nurse quickly said, "I can tell I have lost the battle." Gave Dave the reigns and stepped back. We were so excited to be able to look Jonah in the eyes and talk with him. He was excited too. I think we have all seen a dog get excited to see his owners, well at least mine do. They do the happy dance and can't hold still. Jonah was like this. His blood pressure rose, but not too high, and his eyes danced from Mom to Dad for a long while, as long as we both stood there and spoke to h...

Today is a day to remember. I called to check on Jonah this morning. The nurses first words out of her mouth were, "Jonah had a pretty rough morning." This is not what I wanted to hear. After hearing her out, she said that Jonah had been very hard to keep paralyzed, so she petitioned the doc's to take Jonah off the paralytic. Jonah still wasn't staying calm, so she again petitioned the doc's to take him OFF THE VENT!!! Jonah has been off the vent all day, and down as low as 36% on his oxygen needs. Hurray!!! She also commented that today would be the perfect day to try this because no one would be around to bug him. I laughed and agreed with her. Not that we bug him, but it needs to stay quiet for him to stay on the C-PAP. He struggles with shift change because it tends to get a bit noisy, but after the day nurses leave and things quiet back down, Jonah tends to do very well. I asked if this means we could hold him. The nurse responded, not for a couple...

Today Jonah is 220 days old. Jonah is only 20.53 days away from being 2/3rds of a year old. Today was another breath of relief for Mom and Dad. Jonah's oxygen needs are down to 36%!!! A combination of things are happening for Jonah: 1) the petitioning of our Father-in-Heaven in behalf of Jonah's welfare; 2) Priesthood blessings; and 3) The steroids are finally kicking in and taking affect. So well infact that the Dr. wants to run them for a 7 day course instead of 5. As a side note to this, Jonah's doc. won't have to stop by the bar, as for now. We have made some wonderful friends here at Primary's, other families that have children in the hospital. It is fun, encouraging, and a good source of relief to talk with them about the various aspects of life. Dave has found many people that love to fish, and learning some good secret valleys to fish in and how to fish them. Hopefully one day he will be able to go on adventures to find some of the "No tell...

So... happy news today!!! The EEG results were negative, Jonah was not having a seizure at the time of the hour long test!!! What they think was the problem was: Jonah was coming out of sedation, and as he did so he would become a little angry and his blood pressure would sky rocket. One of the doc's, the one that is so supportive for Tanya and routinely checks on him daily and some times multiple times a day, told Tanya today that, "If this boy doesn't start improving, I am going to have to stop by the bar on the way home; because this boy is going to drive me to drink!" I guess this is Jonah's way of showing them who is top dog around these parts. Today Dave received a phone call from the McKay family of docs asking for an update to take to the weekly NICU doctor's meeting. We were happy to give them an update and very relieved that they still wanted to know how Jonah was doing. We have made so many wonderful friends on this little Journey we are traveli...

It's getting pretty hard to blog lately because all we get to blog is bad things. It sure puts a damper on the optimism we are trying to muster. Today the medical staff thought Jonah was having seizures his blood pressure and heart rate were very high, his blood pressure was in the 130 range, this can be a sign of a seizure due to his brain bleeds, but where he is on the pavulon and paralyzed, he is not able to shake. As a result he was given an EEG, elctro encephalus gram, which monitors the brain waves to see if there are any irregularities. The results will not be in until tomorrow.

Today has been a bad day right from the get go. We had our high hopes of going to see Jonah to play with him and all the stuff we did yesterday. Well when we arrived, Jonah was back sedated and paralyzed; and his CBC, the white blood count, was up and he does have an infection. Tanya didn't take this news very well. She was hoping that Jonah was doing better before she has to go back to work tomorrow. Yet with a blessing, and the many prayers in Jonah's behalf we are confident that he will overcome this as he has many times before. It's just hard for us, and I am sure of many people who follow little Jonah, to see him in a state like this. Its amazing how gravity of the many situations have the ability to draw us to the center of a good or bad attitude, the one of our choosing. We are so very grateful for those of you who, spiritually, emotionally, and mentally help us in the many various ways. We will be ever grateful for your help!!!

Happy Easter to everyone!!! This evening was pretty interesting, it hit the fan, kinda, about 8:55 pm. Jonah desaturated on his oxygen levels down into the low 80s, even when he was turned up to 100% oxygen. His blood pressure and his heart rate were wonderful; his body just wouldn't oxygenate very well. After sucking out his ET tube and two puffs of Albuterol Mom and Dad finally decided it was the noise level in the room. The poor nurse next to Jonah was having a very difficult time with the child she was attending to. We could, and I am sure Jonah could as well, feel the tension rising as more and more alarms started to sound. So to try and fix this we asked for a cotton ball tore it in half and stuffed it in his ear. This worked, his oxygen levels went up 2%!!! none-the-less, Jonah has been moved to a much quieter room in the NICU. As for med changes Jonah is officially off of the Pavulon, the paralytic drug, unless he finds himself backed into a corner and can't ge...

Not much to say about today. The new drug they started yesterday on Jonah, Flolan, has taken affect, and as the amount they give him increases he oxygen needs are decreasing. Jonah received his presents from the Easter Bunny today, Gus and the books. We had fun reading to Jonah tonight. My Aunt Jo sent us a book of Old school fairy tales like Snow-white and Red-Rose, and a whole bunch more that neither Tanya nor I recognized. They are really fun to read though. So as for now Tanya and I are reveling and basking in the quiet times of Jonah's progress, albeit slow going we are still progressing!!! Thanks to everyone who prays for our little family.

Today the doctors followed through on their previous threat of starting the Flowlan. So as you can guess Jonah got some more pokes. He now sports a peripheral IV (PIV) in both is left hand and left foot. Yes it takes two IVs to replace the one PIC line that is now dedicated to Flowlan. We just hope that his PIVs last longer than 24 hours. I must tell you all about my new hero. His name is Dr. Null. He is the man who helped invent the ventilator that Jonah is on. He is head honcho here at the PCMC NICU. He is also one of the most kind hearted, caring man I've yet met. Previous to meeting him I was told what a wonderful Dr. he was and how knowledgeable he was. I automically assumed that he wouldn't be very personable. I was soooo wrong. He has taken our little family under wing. He comes by Jonah's bed side twice a day to check not only on Jonah but Mom as well. He is the first to offer encouraging words and a tight squeeze just when I need it! As soon as David ...

The big news today is that the ground we made yesterday was lost last night and early this morning. It has taken all day to get back to where we were yesterday....but....we made it. Today was kinda rough on Mom. We had a nurse who is a great nurse but was really annoyed with me wanting to be involved. She told the night nurse that we bug Jonah too much. Grrr. If she only understood. But alas it seems that I'll have an opportunity to be brave and speak up because she has Jonah again tomorrow. We appreciate all the prayers and your concern. I find myself checking the blog at least 3 times a day to read the comments you post. They do so much to give me a boost and help me continue on when I'm weary. ***I forgot to mention the ACTUAL reason Jonah deteriorated so quickly last week. It was NOT the shots. Instead the problem was that Jonah refluxed and aspirated filling his lungs with milk and stomach acid. The doctors have know that it was happening and that is why he was ...

Jonah made some head way on his oxygen needs. The doctor threatened Jonah to give him another med, Flolan - which is similiar to the NO 'nitric oxide' which helps dilate the bronchiols so Jonah can oxygenate better, which would require a dedicated IV line that comes with another poke. Within hours Jonah had decreased his oxygen needs from 78% to 50%. Jonah can do it if he wants to!!! Go Jonah Go!!! I got a little anal today about Jonah's hair always being a mess, so I asked the nurse if we could have a tooth brush or something else to brush his hair. She brought back a surgical scrub brush, which Tanya promtly tore the sponge off and left the bristled end for me to use on his hair. His part is darling right!!! So we are learning to find joy and fun in most of our trials.

Wow, what to say about today. Last night things seemed to be going so well. Then around shift change, I think Jonah is aware of shift changes because he doesn't do to well with them, his stats started to decrease and they had to put him back on the paralytic. The highlight of my days are when the paralytic is wearing off on Jonah, the nurses will let him come out of it as long as he can control himself and maintain his stats and composure, and he begins to recognize my voice and wrap his little fingers around my one of my fingers, jostle his head back and forth to find me, and when he does, He opens his eyes to find me to make sure I am really there. What an amazing experience!!! Things are slow going with Jonah. It feels so go to not have Jonah teetering on the fence of mortality any longer, well not as bad. Jonah is still on high ventilation settings and looks much better. We have been granted a RV spot at PCMC. Tanya's brother and Sister volunteered their trailer to ...

First thing this morning Jonah's Doctor came in to check on him. He bugged him a bit then when Jonah's sats started to go down he listened to Jonah one more time then turned up a couple of numbers on the Vent. (The doctor Jonah has today is one of the original creators of the occilator vent. He also specializes in BPD which is the lung condition Jonah has). Well this man KNOWS his STUFF. Jonah seems to have enjoyed the added support his Doctor gave him. We have not been able to ween on the vent today but we have started to ween on the ammount of oxygen he is recieving. The NNP today was concerned with how often and how much Pavulon (the drug that temporarly paralyzes) Jonah was requiring. She asked the nurse to give him a chance with out the drug and see how he does. I am pleased to report that his last dose was at 11 and as long as the nurse keeps on top of the Morphine and Adavan Jonah has been Great! He wiggles around a little and opens his eyes occationally. This...

So... not much better today. The settings on the vent have gone back up to help sustain Jonah in breathing. The x-ray finally showed the aspiration in Jonah's lungs, which will eventually be reabsorbed into the body or suctioned out by the nurses when they suction the ventilation tube. They have started a course of steroids to help Jonahs lungs work a little better. They initially started this course yesterday for 5 days, as this has had little to no affect on his lungs, they dose has been doubled and Jonah will receive the treatment until he no longer needs the steroids. The doctors are mentioning that if Jonah's condition does not improve in the next day or two they will revisit the idea of a heart catheter. A heart catheter goes in the artery located at the groin, and into the heart to check the pressures and can be a little more accurate than an echo cardiogram. A few people have asked me if we think Jonah is going to make it through this. Our response is simple. We ...

Not a lot of changes today. Jonah's RT today described his condition as "Critically Stable". He was kept sedated and paralyzed and as a result he was able to ween on his vent settings. Jonah's "Aunt Morgan" (an RT from McKay) came down to visit Dave and I today. It sure is good to see a familiar face. They increased his viagra today, put him on a morphine drip, and increased his paralytic. Then just before bed time M&M came down to say a quick hello. Thanks for eveyones support.

SOOOOOOOOOOOO... What to say? We have seen slight improvements today. Jonah has taken a few opportunities to show his true colors by giving the staff a run for their money. They quickly learned that to make any progress with Jonah they needed to keep him heavily sedated and chemically paralyzed. While in this state they are able to ween slightly on his vent settings. We are defiantly not out of the woods but it is nice to make progress even if it's only a little. Keep the prayers coming! We surely appreciate it! Love, Dave, Tanya, and Jonah!

The glare on this one is pretty bad, but can you see that Jonah is almost too big for the isolete? kinda neat!!! Jonah just couldn't wait for his first ride in a helicopter. Oh boy, I wish he would have. You can see the lifeflight team as they are about to load Jonah in to the chopper. Is it ok to tell everyone what monstrous headaches both Tanya and I have right now, from stress, worry, heart ache, stress, and worry!?! As many of you may know we had some emergencies today and last night that made it possible for Jonah to have a nice little helicopter ride. He did get to meet "Mother", Jonah's aunt Morgan, the Respiratory Therapist (RT) from Mckay, mother. She was the neonatal specialist flying with Jonah today. The report came back that Jonah championed the 15 minute flight!! Hurray, that is one of the few good tid bits of news we had today. The other came from the cardiologist, after viewing the echocardiogram he was pleasantly surprised that the cardiac pres...

The ventilator fairy came to visit Jonah today... Yes that's right Jonah had to be reintabated this evening. He had his immunizations at 1:00 this morning and the doctor suspects that his horrible day is a result of a bad reaction to them. We do not know how long he will need the vent nor do we know how this will affect the transport to PCMC. We ask for your prayers in our son's behalf.