2 Brothers Layne

A pH check was done today to verify if the prevased-i don't know if i spelled that correctly-, to see if it was working. They put a ng down his nose to his stomach, sucked out some of the stomach contents and checked the pH. The pH was 1, which is as acidic as it comes. He received treatments of prevased and zantac to get that pH up to 6 as quickly as possible. Mom and Nana-Grandma Layne, said that Jonah was crying and almost had everyone else in tears because he was in pain and there was nothing anyone could do to comfort him and take away the pain- at least right then. To let every one know Jonah has at least 2 major obsticles to overcome before he came come home with us: He has to come down from 6 liters to 1 leter or less and to have his G-tube healing and functioning properly. Mentioning the G-tube, it has been leaking, and with the pH being 1 has had the potential of burning the skin around the G-tube because it has been leaking. On the positive side, Jonah's skin ha...

Today was a pretty good day. No change is good news. Jonah stayed up late last night playing with the nurse, as a result he slept the most of the morning, "Little Toad!" says mommy. More blood was taken to check for bacteria growth, we will find out in a couple of days if this is a positive result, bacteria is still in his blood, or negative result, the antibiotics are doing the trick. More waiting, and more progression. This is a good place to be!!!

Smiles and Giggles, smiles and giggles. Jonah had a very pleasant day today. His PICC line is gone and otherwise tubeless, with the small exception to his high flow nasal canula that he has been on all day, and the g-tube in his tummy. HOW WONDERFUL!!! Jonah did not like the therapy today and was very aggitated, that was until he had a bowel movement, otherwise known at McKay as a BM-right angela!?! After that he was a very pleasant baby again. As mom and dad were leaving today Jonah was developing another present for the nurse, a nice big juicey one. I never thought I would be Joking about poopy diapers. Isn't it strange how almost 9 months in the NICU can warp a human mind!

The Doctors made it official this morning when they told us that Jonah is now being transitioned to come H-O-M-E. (H-O-M-E is a 4 letter word that we don't use around her, it makes bad things happen.) So today was another good day. We started up PT and OT again (Physical Therapy and Occupational Therapy). It seems that Jonah's PICC line has an infection and the only way to get rid of it is to pull out the line and continue with the antibiotics. So all day the nurses have worked to get Jonah up to full feeds in his g-tube and by tomorrow morning he should be there. Then if they decided to switch his anti-biotics over to one that can be given orally we could have the line out as soon as tomorrow afternoon.

Today was a bit of relief. Dad went down during the day and received a huge surprise!! When he arrived the RT was busy working on finding all the stuff needed to put Jonah on a high flow nasal canula. Jonah gets a break from the bi-pap 2 times a day for an hour. one at 11:30 am and 5:30 pm. During the 11:30 am session Dad was able to hold Jonah, I think we both enjoyed that very much, tomorrow they will start back with the physical therapy to try and make up for lost ground during the 2 week hyades while being on the vent. Today was also a first for dad. Jonah spit all over him. The bi-pap has so much pressure that it forces air out of Jonah's mouth, and because Jonah doesn't swallow right now all the spit comes out his mouth. Well, Dad didn't realize this and the first thing that happened was Jonah spit all over Dads face. The nurse laughed and said, "I bet you didn't think that you needed safety glasses to visit your son did you!?!" as she laughed....

Today has been a trying day for the nurse, when we called this afternoon the nurse commented that they are doing well to keep Jonah off the vent. When we arrived around 5 Jonah's face was a mess because he has some high levels of saliva, which is the last worry about Jonah- thankfully. But by the time shift change came around we had Jonah looking much better. Tears were shed by all 3 of us today when we finally came together as a family, it is very difficult to see Jonah in such a state of critical stability. Jonah does not feel well!!! We can see that. When we arrived they were also trying to take some blood samples to see if he has any sort of growths in the blood stream and in the PICC line. The heart doctor, the one that performed the heart cath lab, suggested they do another ultra sound on the heart to check and see if there are any growths of bacteria or any other unauthorized bugs growing in the heart. So more of the dreaded game, Hurry up and wait!!! Tanya and I are ...

Today has gone as planned, well kinda. The extabation went well, Jonah is on a bi-pap, it is similar to the c-pap, but it is a mask that goes on his nose. Mom says that the c-pap can be used in the same way but the bi-pap can be used to assist him when he inhales and exhales instead of doing it for him. Hopefully tomorrow we will have a picture to show you Jonah's blue nose. Jonah received a blood transfusion today, we are hoping to start feeds in the next few days-surgery cleared Jonah to eat we are just waiting for the ok from the neonatologists ok. Jonah has received a lot of sedation today because Jonah is not a big fan of the mask holding the bi-pap on his nose. all-in-all a calm day!!!

Today we are seeing some improvements. Jonah's blood work is improving greatly and he is acting like he is feeling better. His g-tube and incisions from the surgery are healing well and he is receiving 3 big doses of steroids two this afternoon and one early in the morning to help prepare him to be extibated around 10:00 AM tomorrow. The RT has been weening on his vent settings and Jonah has tolerated it well. Another one of our NICU friends has lost the fight for life. Our hearts ache for the Green family and our prayers are with them. Leeta and Nathan you are truly an inspiration!

Today was more of the same. The white blood cell count has come down, and it looks like Jonah is on the mend, just don't tell him that. More blood cultures were taken today, when the surgical team came by today they were very concerned about the fever and the possible infection so soon after the operation so they ordered and Esophogram, which they ultra sound the esophagus to make sure there is no cuts or perforations in it that could cause some serious problems. This may happen tonight or tomorrow. Jonah is still on the ventilator, still sedated, but otherwise doing ok. For a break today, we went with Tanya's family to the Zoo. A good time was had by all!

Today hasn't been the best of news today. It is starting to look like Jonah has another infection, he has had some fevers last night, at least a wide range of varying temperatures, and a lump has developed under his left arm, this is the arm that the PICC line has been in for over a month. They will be pulling some blood to run cultures on to see what kind of infection Jonah has. Tonight Tanya and I had a class to teach us how to care for a G-tube. One course down and a whole bunch more to go.

Not much news today. Jonah has had a pretty good day. They have been able to ween some on the ventilator and when the nurse changed his bandages around his g-tube she said that it only had a tiny drop of blood. We attend the g-tube class tomorrow at PCMC to lean how to use and care for Jonah and his g-tube! Now that we are living in Ogden again we decided to bring our yellow lab Jaxton home. Jax had been living with Tanya's sister and her family in Tremonton since Jonah flew to PCMC on April 2nd. We really appreciate their help with caring for Jax. A special thanks to Matt for taking such good care of Jax for us!!!

Jonah before surgery today Jonah after surgery today Close up of Jonah's tummy Today was Jonah's surgery!!! He received a G-tube and a Nissen today. He is still heavily sedated and will start weaning off the vent as soon as Jonah shows signs of of coming out of the surgery sedation. Feedings will be held for a couple of days to allow time for the g-tube to start to heal. Thanks for the prayers!!!

So today has been a pretty uneventful day. Jonah has been doing very well on the vent as long as he is kept highly sedated and handcuffed to his diaper. As long as these measures are taken he has not needed to be paralyzed and how grateful we are for that!!! The surgery is still on for tomorrow although it is currently scheduled for 5:30 pm. This gives Mom time to teach a half day at school before rushing off to be with Jonah. That should help the day go by a bit faster! We appreciate all your thoughts and prayers. We hope and pray that they will be able to go through with the surgery and that Jonah will have a speedy recovery. This will be a HUGE step toward coming home!

This is how fast things can change in our world. Yesterday Mom was loving on Jonah in her arms. Today Mom was loving on Jonah while he is back on the ventilator while lying in bed heavily sedated, but not paralyzed. Today we received a call from the NNP saying that Jonah's CO2 was in the 140 range and that they had to re-intabate, that they had surgery come and do it in preparation for Wednesdays procedure. They have also stopped his feedings, they won't ever conclude this but Tanya and I will: Jonah asperated, no infection, no bacteria, the only positive thing that has ever grown out of a culture is from the spinal tap they took, and even that was concluded to be contaminated. They have a machine hooked up to the ventilator that measures the CO2 that is exhaled so they don't have to poke him so much. Mom reported that while she was visiting Jonah that he would cough and the nurse was able to suck the junk up out of his lungs. So we are grateful that he is intabated ...

Last night was the start of a beautiful day. The night RT, after checking all the hoses and tubes supplying Jonah with oxygen, found a valve that was only partially open, hence the reason Jonah was struggling so much because he was not getting all the oxygen that we all thought he was getting. The nurses reaction last night to Tanya was, "Jonah has turned the corner!!!" GO LITTLE MAN GO!!!! This morning they pulled the IV out of the femoral artery, which means mommy could hold her little angel for as long as she liked!!! There is nothing harder than not being able to hold your son while sick, but being able to hold him is like a beam of sun light in the mist of a hurricane. So far we are still on track for Wednesday's surgery, hopefully all will go well and Jonah will be healthy enough for the g-tube and Nissen surgeries. These surgeries are laproscopic and shouldn't be too difficult, but we will still be praying hard in any case. Thank you all for your suppo...

Today was an up and down day for Jonah. We tried to take Jonah out of his tent but was unable to sustain life outside of his own little bubble. Ha ha ha. It is looking more like Jonah has pneumonia. Today he acted very much like a sick little boy. It was hard for us not to be able to pick him up and hold him, and only be able to hold his hand and pat his chest. And I thought I was pretty tough, this boy of ours has out shined me in toughness HANDS DOWN!!! G-ma and G-pa Selman came to see Jonah and stuck around for a good long while to offer support to Jonah. Jonah also had a special visitor, Grandma Biddulph, all the way from Arizona. It is good to have all the support from each and every one who comes across the blog and prays for Jonah and his parents!!!

Today was a pretty calm day for Jonah. He has come off the vent, in record time might we add!!! He has had to have a constant 100% blow by on top of the high flow nasal canula. To save on back pain and lost time by the nurse, the RT came up with a box (since Jonah is sooo big the bubble he was in at McKay will no long work for him). He is able to maintain the oxygen saturation needs and do well. Nothing has shown positive for any of the cultures they have taken; yet the line of thinking is pneumonia, they are getting a lot of secretions out of his mouth. Jonah is doing well, as can be, and is on the mending road. He is recieving a 7 day course of drugs to treat for bugs.

What a devastating day!!! We arrive early, giddy, and happy about the procedure happening today. BAH!!! They ran some blood tests this morning to check for white blood cells, which were high. He has some sort of infection, possibly pneumonia. The surgery has been postponed until next Wednesday, if he is doing better. At least Jonah looks good. To help brighten our day, a very generous person made it possible for Tanya and I to have a night in "Fat City" and not worry about a thing. We chose to go to a movie, Star Trek, awesome!!! We are so very grateful for our never ending supply of support!!! In addition to the morale booster we were given a card with a beautiful poem it reads: A NEW PERSPECTIVE By Helen Steiner Rice Sometimes the things that seem the worst Turn out to be the best, So think of this as just a time to get a little rest. And while we cannot understand Why things happen as they do, The one who hangs the rainbow out Has His own plans for you.

We were talking with a fellow NICU Mom today and we all decided that we are in Bagdad! To better understand this comment please Google Welcome to Holland by Emily Pearl Kingsley. It has been a big day for our little family today. First let me reassure all of you that Jonah survived the day and was resting peacefully when we left this evening. We started the day off by having a whole lot of snuggle time with Jonah… in fact we held him up until it was time to go down stairs for the heart cath. It was enjoyed by all. The heart cath started at 1:00 and we were given a pager that would alarm when they were finished. So we decided to make the most of our time and clean out the trailor before Tanya’s brother came to get it. An hour and a half later we were done cleaning and no page. So we next embarked on a movie (August Rush). We anxiously watched the entire movie and still no page. So we headed into the hospital to wait. We waited there for about 10 minutes a...

Today was a pretty calm day, last night was a bit concerning though. When Mom came in to say good morning to Jonah the nurse informed her that during that night Jonah had refluxed and they had so suction his nose, well they didn't find out he had refluxed until they suctioned out his nose, and they sucked out formula. Concerning right? We thought so. This afternoon when we called we were informed that the heart cath will be tomorrow at 12:30, and the G-tube will be on Thursday. We asked about the Nissan surgery, and expressed our concern for the safety and well being of Jonah and pressed the Doc's to do the Nissan surgery as well. The NICU doc's said that it was up to the Surgeons if they do the Nissan or not. So we will be pressing them to perform the Nissan when they do the G-tube. The problem with waiting on the nissan is that once the g-tube has been done it changes the anatomy of the stomach and makes it very difficult to perform the nissan later on. We find i...

So this post is kind of a tough one, I can't really write what is on my mind due to frustration speaking ill of people because of my frustrations. In my brilliance I have composed a list... A list of things I have learned, again, but this time it is about hospitals. Now on to Jonah. Stink Fish!!! This has been my attitude today. This morning started off a little rough when I was informed that by the 14th we need to move the trailer we are staying in. This morning when the NNP came into check on Jonah before rounds she informed me that the pH probe, you know the one we thought was negative. Well, the test results are finally back, I know right! It's about stinkin' time, They show that Jonah is, that is right, IS refluxing in all positions. So he will be getting the Nissen surgery after all. I learned another word today in the medical lingo which I will expound on in the list, tentatively, as another results of scheduling conflicts, Dr's being out of town, and v...

Feeding therapy this morning didn't go to well. No sucks, no swallows, Jonah spit what little formula we put into his mouth out. The important thing is that we keep a constant supply of oral/feeding therapy until Jonah sucks and swallows!!! We have been told that Jonah has two appointments for surgery this week. One on Tuesday for the Heart CathLab, which will measure the pressure in his heart directly; and the G-tube scheduled for Wednesday. The heart people may throw a wrench in the mix due to some scheduling conflicts, but that will be between the heart docs and the g-tube surgeons. So here is what both surgeries potentially mean. lets start with the G-tube first. The G-tube will enable us to go home even if Jonah is not taking full feedings by mouth. It will also makes things a little easier when Jonah gets sick to keep him hydrated and properly fed. Now for the more serious/critical surgery. The heart cath lab will tell us, potentially, how long Jonah will be in the ...

Jonah loves his mommy!!! We had fun taking pictures today. Our latest family pic Jonah playing in his bouncer/saucer. Jonah had a pretty good day today. Last night the PT came rushing in to find Tanya to be sure and ask that we were going to be able to be here today to keep up with Jonah's therapy. We assured her we would be able to do it today and tomorrow. As for today, everything went very well. Jonah played with Tanya for his therapy in the tumbleform to work on sucking and swallowing. Won't it be a glorious day when we can finally say, "Jonah sucks!!!!! . . . and swallows." Jonah is now off the NO, nitric oxide, and down to 70% oxygen at 2 liters of flow. HURRAY FOR JONAH!!!! p.s. Thanks Sister Biddulph, I knew I could count on you to boost my self-esteem with Jonah's outfit yesterday!!! So about the picasa, some one asked how to get access to it. Instead of sending out mass amounts of emails, I have decided to put a slide show on the blog. This con...

HAPPY 8 MONTH BIRTHDAY!!!!!! Today was a fairly fun day for Jonah. He was able to get into a bouncer, but with a saucer bottom. He seemed to really enjoy being able to support himself, well as much as he can. This tired him out quite a bit. He slept from about 1 pom to roughly 430-5 pm. Jonah will have the Heart Cathlab on Tuesday. During this study they will administer different medications to see how he responds while measuring the pressure directly in the heart. The echo showed some regurgitation through the tricuspid valve, the pressure is moderate/low, for the medical people 29 mmgH, this is just the pressure in the heart; for the rest of we layman, the thought process is the lower the number the better. There also is signs of pulmonary hypertension, signs of hypertension in the heart, which we knew; which is an increase in muscle on the right ventricle, also known as Cor Polmanale. This is caused by a couple of things, one is the pulmonary hypertension, which makes the h...

Isn't is just so awesome how far Jonah has come!!! I hope you enjoy these pictures, i know you have seen some of them already, but it is amazing to me to see where Jonah has come from. We have a friend in the NICU whose baby is about 3 lbs, and is no the road of going home, maybe by mid-june. I can't believe how little these babies are compared to Jonah. Sometimes we get pretty down and discouraged that babies go home, babies that were born at 23 weeks like Jonah, close to their due date or even before. But, this has been the journey of a lifetime; one that I would never want to repeat, but we, Tanya and I, have grown so much and learned many marvelous works and wonders!!! Hope you enjoy. On with therapy!!! We work with Jonah for about 15 minutes at least 2 times a day. Theses sessions tucker the poor little boy out. He was so tired after the 1st therapy session he took a 3.5 hour nap. and is coming close to that after the 2nd session. Jonah sits in a seat called a tum...

There were a few changes today. First the doctor has started to ween Jonah’s Morphine from 5.5 to 5 even. They have also weened his INO (Nitric Oxide) from 20 to 15. At midnight it will decrease to 10 then by 2 every twelve hours. The goal is to get him on minimal amounts of INO by his next heart echo on Friday. They hope that this will enable the ultrasound tech to get a more precise measure of what is actually going on with his pulmonary hypertension. There is still talk of a heart cath. if the echo doesn’t get more specific on Friday. The Physical Therapist (PT) came in today and started trying Jonah on some formula. He did just as we suspected he might… not so great. It seems that Jonah has developed quite an oral aversion and no longer sucks nor swallows. When they put formula in his mouth he would stick his thumb in his mouth too and all the formula would end up on his sleeve. So we begin the tedious process of patiently helping Jonah relearn how to eat. So Jonah did ...

I hope you enjoy the pictures. This is part of the therapy/play we do with Jonah to help him develop proper body and muscle usage. just chillin' with the mommy This is Jonah's knook brush, we use it to tickle his mouth to try and desensitize it so he will not have an oral aversion Jonah loves his lip balm. I think this one is strawberry, he can smell it and loves to lick it Jonah gets to play airplane as part of his daily therapy to try and help him gain head control And finally; our happy little baby. All these pictures were taken right after Jonah woke up, you can definitely tell by the hair. P.S. by the way, Jonah is rubbing a bald spot in the back of his head from moving his head from side-to-side trying to fight off sleep. The nurse reported today that most of the pH levels in were about 4, which is what the pH of apple juice is, and that everything has gone very well. When we arrived this afternoon Jonah was sleeping on his right side. Jonah is getting his feedings,...

Very little changed today. Jonah has been blessed with yet another good day. This afternoon they started the PH Probe. They placed a small tube down his throat. This tube is connected to a small monitor that reads the ph level at a spot in his throat and one in his stomach. Then they feed him apple juice for one feed then milk the next every four hours for a twelve hour span. This test will tell us whether or not Jonah needs the nisan surgery. I'm told that if this study shows that he is not refluxing the next step will be to do a swallow study to see if Jonah is ready to try bottle feeds again. Our little boy sure is a brave and valient soul. One who was sent here to teach us all many of life's lessons!

ANOTHER SUCCESSFUL DAY!!! Over the past 2 days they have gone from feeding Jonah continuously into his intestines to feeding him over 30 minutes right into his tummy. And he is not showing any signs of refluxling. We are surprised and impressed and we pray that it might continue. It would be wonderful for Jonah to have out grown his reflux days and to no longer need the nisan surgery. We will still push for the g-tube to help us make sure Jonah will be able to get all the nutrition he needs until he is willing to take it all by mouth.

Today is more of the same. Smiles and giggles. We were supposed to go to the zoo today but were rained out. Bummer. Dad was able to put Jonah to sleep tonight and was resting peacefully when Mom and Dad left for home to get ready for a baby blessing tomorrow.

About the Upper GI test today. Nothing happened. No refluxing. So what does that mean about the Nissan surgery? We are not really sure. We think on Monday Jonah will have another study done, this one will be on the pH levels of his stomach acid. We are still concerned about the refluxing and thought we heard the "Old Man Cough" again, but nothing came of it, and it didn't seem to bother him. Other than that Jonah has had another good day. Mom was able to play with him for a couple hours at a time, then Jonah would get pooped and Mom would put him to bed. He would wake up and the routine would start all over again. We are just excited Jonah is doing well. Mom says that Jonah is a little tease to the nurses that come in to see him. They will play with him and get him to smile, but as soon as they start to talk to him, he turns away from them and gives them the old cold shoulder and silent treatment. Then they stop talking and a few moments later, they can play...

So, it's time to weigh-in, who do you think Jonah looks like. The night nurse commented that Jonah looks like Dave. We all can guess what Dave said, "Well then, Jonah must be one of the best looking babies in here." The nurse rolled her eyes and laughed. Any ways, tell us who you think Jonah looks like, for those of you who have seen us. We would love to hear what you are thinking. Isn't this a great pic!!!! we had a lot of fun tonight with him. So this is a typical picture most of the days. We have waited for almost 8 months to get a shot like this!!! We were in the middle of doing his exercises and playing patty-cake. Jonah is doing great today. He is down to 2 liters of flow on his oxygen needs at about 40%. They are continuously weaning on his meds until tomorrow. He will have a couple of tests tomorrow: an echocardiogram, and then he will have an upper GI study to see if he is refluxing and how bad. We are very nervous that when they put the fluid i...