Ten day Report

Sunday 29 March 2009
Its been 10 days since Jaren came home and he seems to be doing great. He is gaining weight and sleeping as he should be. His big sister (she'll be 3 in June) is adjusting to having someone take up her mother's time instead of her. All in all things are great,prayers have been answered and we all feel blessed by the Savior.

Home at last

Yes we are finally home, it is so nice to not be in a hospital. Karis got to meet her little brother for the first time today and she was so excited. Jaren is now a month and 1 day old and is doing great. I was worried we would have to stay the weekend, because Jarens white blood cell count was a little high, and that has been what kept us up there, twice this week, I got the truck loaded to come home and then was told we would be staying one more day, so when I got the report that Jarens count was still up I thought we might have to stay the weekend, I was so happy when our doctor told us he could now come home. What is even better is one of the nurses that works at Childrens Mercy in KC lives about 3 miles from our house, and she told us that if we have any questions or concerns she would come and check on our son or give us help if we need it, what a comfort that is. I know the Lord has had his hand in this miracle all the way from the beginning, all the way to make sure there is help near by if needed, I know Jaren is a special little boy that will do great things in his life, He has such a wonderful spirit about him that has changed peoples lives for the better all around the world and he is only a month old, I am so honored to be the father of such a son. I can't wait to see the things he will do with his life, He has influenced me to be a better person, a better husband, and a better father. Karis is the same way, I in no way deserve the wonderful children that have been placed in my life, my little family is the greatest blessing I have ever recived.

Sing with me now! ( what ever tune you wish )

We're coming home!, We're coming home!, We're coming home!, We're coming home!, We're coming home!, etc., etc., etc., etc., etc.!!!!!!!!!!!!!!!!!!!!

Happy St. Patties Day!!!!

Jarens rash is gone, the doctors have decided it was caused by an allergic reaction to vaincamicine (I think I spelled it right), or his last dose of antibiotics. Tonight we will be staying in the hospital with Jaren again. they are still pretty adamant we'll go home on Thursday and not before. (I've tried bribing the nurses to help us get out early but no one is taking my offer) he will still be on monitors until we go home. He is still doing great and eating well too.
We won't be able to use cell phones in the room so if you would like to chat, write a comment on the blog, or brentlambeth@gmail.com, I check them both often. thank you

Maybe Thursday

Our Nurse Practitioner says hopefully Jaren will be released on Thursday. He is doing great now, but because he was doing so well last time and got so sick so fast, the hospital wants to watch him a couple more days to make sure he doesn't have a repeat. I offered to slip $50.00 to any one that would let us go on Tuesday, but I just can't get anyone to go for it, I was told this is Kansas City, it would take more than that, so I offered $50.00 and a big bag of M&M's; I think I'm wearing them down. ( ha! ha!)
Jaren is still gaining weight and still eating good. The doctors have removed his IV's and feeding tube, all he has on is monitering wires, and hopefully they will come off soon too.

News worthy of a party

Jaren just ate another 95ml ( I guess ml and cc are the same ) and that is just awesome! He has also been gaining weight. I am not sure what his weight is at the moment but he is looking a bit chubbier which is a joyful thing to see.
I have been asked a lot about how Mindy is holding up with all of this; she is doing very well, so well in fact she asked if I would go back to work so she could have some alone time, maybe I am such a supportive husband I just do too much, or I am just flipping annoying. Well all kidding aside we have both been pretty up beat though out this whole thing, biting off our nails by day, and heckling the nurses by night, I think Mindy has even booked some catalog shows with a couple of the nurses. I am just excited that it looks as if we will be coming home real soon and I just can't wait to be home and have both my children and my wife together in the same building.

Progress

Jaren just hit an all time feeding record of 95cc. The last record was 70 right before he got sick.
The doctors have determined the rash was caused by an allergic reaction to his antibiotics, and they have stopped all intro venial feedings because he is eating so well, they still want to watch him a few more days, we are still not sure how long, I am guessing Wed. or Thurs., but that is still speculation, they are still waiting on some previous cultures taken on his blood to rule out all possible infections.
I am just happy to see my son eating again and not in so much agony, I will report more as I hear it, and would like to apologize for a previous report when I thought no one was reading the blog, We are so blessed to have so many friends in our lives and I guess when I didn't see any comments for a while I assumed wrong and again I am sorry, Brent

Karis the big kid, with a ravioli smile

Here is our baby, no strings attached

Jaren and daddy taking a nap

Jaren, sporting his suit and tie

The mystery Rash

Jarens rash that we have been talking about is still a mystery, all the cultures that have been sent out come back negative, they are now testing for fungi and decreasing his antibiotics in case it is an allergic reaction, he will also be getting a one time dose of Benadril, other than that he, is looking good, he is eating, very alert and responsive. I will update when we get more results.

What we know

Jaren has a red rash all over his body. The Doctors say it looks viral, we are pretty sure it is a virus. The main thing is Jaren has a very weak immune system and we will have to be extra cautious when we get home with him. The extremely strong doses of antibiotics he has been on will make him suseptable to even minor illnesses for months to come. We will have to limit how many people hold him. Every one will have to wash thier hands thoroughly before holding him and if any one smokes, they will have to wear a jacket or a robe if they have smoked while wearing the clothes they are in before being around him, because of the condition of his lungs. If any one has been sick please stay away untill you know for sure you have no germs to share. I know this sounds like an over protective parent, but Jaren got severly sick and had to be put in critical care before he even left the intensive care nursery. I am just relaying the advice given by his nurse. I mean I could wrap his carier in electrified razor wire, but that would make me seem over bearing. Thank you for understanding these special conditions and hopefully in the near future Jaren can be a normal kid that can wollar in the muck just like any normal kid.

News from the Doctor

I just spoke with the Doctor, all his cultures are coming back negative for bacterial infections, they are still waiting on some and are looking into a possible urinary tract infection, But most likely it is looking like a viral strain, but that will take longer to know for sure. It could also be an inability to process his milk or fats properly, if that is it we will be meeting with an upper GI specialist, as for now we don't have a lot of answers but we are slowly learning what it isn't, we will know more within the next few days, I guess I will try to keep up on what it isn't until we we know what it is. But I would like to insure, Jaren is in the best hands he could be in, he is in the hands of the best medical care he could have, the hands of his Mommy and Daddy that love him very much, he has been given blessings by hands of Priesthood holders, and most importantly he is in the hands of his loving Heavenly Father who has shown mighty miracles in Jarens life, and I have the faith that that will continue, I am sure that just staying one extra day and finding out he was this sick when he could have gone home and gotten a lot sicker, was one of those miracles. It is hard to see Jaren so sick again, but it could be a lot worse.
'' And if men come unto me I will show unto them their weakness, I give unto men weakness that they may be humble; and my grace is sufficient for all men that humble themselves before me ; for if they humble themselves before me and have faith in me, then will I make weak things become strong unto them" (Ether 12:27) Book of Mormon

Evening Update

The nurses took Jaren back and placed a feeding tube and also did some blood work to see if there were any other reasons for not eating, they think he may be starting another infection, and have done another spinal tap and are starting another round of antibiotics to head anything off if it is growing , they should know within the next 24 hours what it is. One of the nurses thinks it might be viral but that is just speculation. If it is bacterial the antibiotcs should take care of it, if it is viral we will just have to wait it out; if it is nothing they may teach us how to work his feeding tube and send us home. What ever the case I am glad we didn't come home and have him this sick and have to come back when he got a lot worse. I may come back home on Monday and go back to work next week, but it will depend on how Jaren is doing.

Jarens progress

I am not sure if any one is still following the blog, but if any one is, it is looking like Jaren will go back on a feeding tube, he isn't wanting to eat and is now below his birth weight, no one is sure why, other than he may still be too weak from being sick and the nurses may have prematurely removed him from his care, so it is looking like we will be here the rest of the weekend. I am not sure if we will continue staying in the hospital, or if we will go back to the Ronald McDonald house.
I will update again this evening and report what the nurses decide.

Trying to come home

Google has had some technical difficulties this week and I have had trouble trying to get things to post, I hope this goes through. Jaren is doing great in every way except gaining weight, he has lost weight a consecutive 5 days now, and is getting close to his birth weight of 7 pounds 10 ounces, that is the only thing keeping us from bringing him home; this problem has every one baffled, he is eating well, except at night, I asked the nurses to limit checking his vital signs at night so he can get enough sleep and that seems to be helping, they have supplemented Mindys milk to add calories, and all his levels are where they should be. I hope eating better at night, and getting more rest will help, and there is the possability of coming home tomarrow, so I sure hope we can, Mindy and I are now in a room with Jaren in the nicu we stayed there lat night and are staying there again tonight, even in these stressfull times it is a bit of fresh air to get to stay with him now, get to take care of him and not have any wires or tubes attached. I hope we can come home soon, I understand if he needs to stay a bit longer, but it will be so nice to come home when we can.

Gooder News

They have finally taken Jaren off the oxygen, and they are monitoring his vital signs for 24 hrs, he passed his hearing test, his 2hr car seat test, this morning they were talking about letting him come home on Wednesday, but this morning Jaren didn't want to eat much and now the nurses are concerned that they have been pushing him too fast, so they might want to wait another day; we will see it might be the vitamin supplement they have been giving him, it can upset little tummies.
I don't want to rush him, but we are soooo ready to come home. As far as I know that is all the new news, Jaren just needs to eat more and show he is gaining weight.

Looking Good!

I don't have a lot to report for today, the big two things going on is, Jaren is drinking most of his milk from a bottle instead of through a feeding tube which means he is building up strength, and he is doing really well on his oxygen levels they decreased his flow from 1 liter per minute to 1/2 lpm so it is looking like he will not need it any more by this afternoon.
The only thing we are worried about is he looks a little jaundice, the doctor didn't seem to be that concerned they have been keeping an eye on him for a few days now and said they want to watch him a little longer but it may go away on its own.
As for Mindy and I, other than being home sick, and wanting to sneak our little one out during the shift change we are doing well, I made Mindy go to Walmart with me last night to change up the scenery a little, from our little 3 block radius world, I think it was good for the both of us.
Untill next time, thank you all. Brent

No more IV

Today they removed the IV from Jarens head, It is nice to see a tube or a wire disappear on about a daily basis, it sure is easier to pick him up and hold him. Right now he is still on a little bit of Oxygen and they are feeding him every other time though a tube that runs down his nose to his stomach, the reason for this is he still hasn't gained all the strength he should have from being so sick, so the act of feeding him wears him out so much he falls asleep about 15ml. into his feeding when he needs about 60ml. So we are waiting for him to let us know when he is strong enough, of course he is still doing remarkably well for an infant that was as sick as he was.
We are so blessed to have such a strong little child and that we get to raise him in this world, I am so happy to be the father of two wonderful kids and to have a beautiful loving wife, Like my good friend Kenny once told me; '' You find out you are going to have a family, and you wonder how in the world will I be able to take care of them? Then after they are there you look back and wonder; How did I ever survive without them? " I have found that to be one of the most profound things I have ever heard, it is so true, and I am blessed every day I have my wonderful wife and kids.

When are we coming Home?

This seems to be the big question, unfortunately I still do not have the answer, I asked the Doctor and she said plan for two weeks and hope for one. Believe me I am hoping and Praying for one. Right now we are waiting on the lab results from yesterdays spinal tap, they are testing for meningitis, that takes about a week for all the cultures to grow, the good news is when there is an infection in the brain, the spinal fluid will have a high white blood cell count, and the fluid will be cloudy, Jarens count was 6 (which is low) and his spinal fluid was crystal clear, so , so far everything looks really good, now we are waiting to see if he can do well without the assistance of oxygen, and are trying to continue teaching him how to eat, he seems to do really well but every once and a while he will not eat enough and they have to feed him with a tube. So I haven't been posting much because there are a lot of still unanswered questions and I didn't want to start any speculation, so I will share what I don't know and maybe that will answer some questions about what is going on, I guess no news is good news; Right?
All in all Jaren is doing great compared to most of the children that have had Ecmo, and as for this week Mindy and I are trying to be with him as much as we can and trying to help him eat, plus we are taking some classes offered by the hospital on infant CPR, and other related things that will help just in case something would go wrong when we get home, of course we also have a check off list of training we must go though before we take him out the door for the same reason.
A huge thank you to all who are helping and praying for us and a great big huge thank you to Premier Auto Sales in Carthage for being so patient with all of this and keeping my job available for when I return, I've been asked a lot if I will still have a job when I get back, And I tell every one I work for a great family run business that takes great care of their employees and customers, so I feel their generosity is worth short infomercial on this Blog, So if you are in the need of a great like new, Dodge, Jeep, Chrysler, or a new Harley for your garage, go to Premier Auto Sales in good ol Carthage Missouri and tell them Brent sent ya! (wink wink)

Just too cute!

Burping

Jaren, in a milk comma

Bottle Feeding

Jaren is now eating from a bottle, which is great, most Ecmo babies have a hard time learning to eat because of all the tubes run down their throats, but Jaren is doing very well and luckily hasn't required a feeding tube, unlike most babies that have been through this treatment.

Jaren and his Ya Yah

Dr.Suess's B-day

Monday was Dr.Suess's birthday, so the nurses dressed up in funny hats and read Dr.Suess books to all the children, they also gave every patient a book.

Jaren and his Daddy

His Name plate

The secretaries made him this sign to hang above his crib, and had no idea his nursery theme was jungle animals. They also gave him a story book about animals in the jungle, and all the babies signs and books are different.

Jaren and Mommy

Jarens warmer

Jaren's IV lines

Kickin it at Jarens Crib.

Yesterday was a big day for Jaren, they completely took him off his morphine drip (with the occasional small dose to help with withdrawal) removed the catheters from his umbilical cord and ran two IV lines on his head, removed the respirator tube from his throat, gave him a nasal canula with a little oxygen, got a bath, a onesie and traded his warmer for a sweet new crib.
Oh yeah, and we get to hold him now, pretty much as long as we like, he has such a sweet spirit about him when I hold him , the problems of the world just fade away and I can just enjoy being with my son, I love him so much, its the best feeling in the world. To know just not that long ago Jaren's spirit came down from Heaven to take a body and come live with us, to know that I have the privilege and responsibility to take care of a child that my Heavenly Father has entrusted me with, to care for, nurture, love, and bring up in the Gospel of Jesus Christ, that is a Humbling experience! Brent

The latest

Jaren is doing so well, they have his respirator turned down to 21, which is the normal rate for human beings with no assisted oxygen, they hope to have him off the respirator by tomorrow morning. He is totally off Dopamine (for blood pressure) and they are weaning him off Morphine, probably over the next couple of days.
I just spoke to one of his nurses, she told me she was really impressed with his quick recovery She told me that it was amazing that just a week ago he was so sick and now he is so strong and doing so well.
I found out just a couple of days ago, My uncle's brother was one of the EMT's that got him ready for the flight to come here, from what I was told it took 4 hours to stabilize him for the trip and he was so weak and sick they really didn't think he would survive the flight; and now to see him, to feel his strong little grip on my finger to see him doing so well, Strengthens my testimony in the love of my Heavenly Father, the power of prayer, and it humbles me that hundreds of people would take time from their lives to pray for my son; and then to see the miracle unfold before my eyes, I know there is a God, not that I doubted, But I know he lives, and I know He is there, I know He loves us and hears our prayers. How wonderful it is to know he cares, if there is anyone person I should give the greatest thank you too, is Him, the one through whom all miracles are received, Our Father in Heaven Thank You!

The latest from K.C.

Jaren is doing great, His blood gas levels are were they should be, I'm not sure what that means, but the nurses are always checking them and keep saying they are good.
They weighed him last night and he is 8.5 pounds so he has gained a little weight, and that is great to finally know.
I am well enough now, I can go and be with Jaren as long as I wear one of those goofy masks, Mindy says I look like a transformer, But I just think it is so nice to see my son.
I would like to give thanks to all who have sacrificed so much to help us feel comfortable while we are away from home, and a special, special heart felt thank you to my Stepmother Tempie, She has been with us every step of the way in these trying times, with prayer, financial support, medicine, moral support, near sleepless nights, tireless effort, hugs, tears, and a shoulder to cry on, thank you, for all you do, we appriciate you so much, love Brent, Mindy, Karis and Jaren

Jaren unhooked part II

We thought Jarens surgery would take place at 3 but the hospital surgeons were really busy today so he went through at 5:30 pm, and was out by 6:30 pm and all is well, he is still sedated and will require a respirator for a couple more days and then they will wean him off that. So far all is looking good and in a couple days we will get to hold him again. Ps. If any of the primary children are following this blog, I was told that you were praying for us, I wanted to thank you personally, your prayers have been heard, and Sister Lambeth and I are very thank full. Your prayers helped our baby and you are a special bunch of spiritual giants. thank you

Jaren unhooked

Today at about 3:00pm Jaren goes in for surgery to be removed from the ECMO machine. This morning when Mindy got to the hospital she told me the nurses started decreasing the intensity of the machine last night, this morning it was just barely on and Jaren was doing well on his own. I wish I could be there to see him after surgery, but I am still sick and must stay away as to not infect him. But don't worry about me, my mother in-law has plenty of herbal remedies to torture me with and I am sure I'll be better soon, (come to think of it, mabey you should keep me in your prayers too! wink wink). I'll give the post surgery update as soon as I receive it.
Ps. I love my Mother in-law She is the greatest, and I couldn't have a better one.

Jaren and his Mommy

these are Jarens mittens, to keep him from pulling out his tubes out and running away.

The ECMO machine

Jaren hits 198!!!!!

Mindy just called me ,
the Doctor just told her when they did his oxygen test this morning his levels were at 198 he needs to be at 200, so starting tomorrow they are going to start weaning him off ECMO , they said this is usually a 6 hour process but he is doing so well they expect it will only take 2 hours.
We will still be up here for about another two weeks, because he will still need antibiotics for his strep infection but there is the possibility we can finish his treatment in Springfield depending on his condition, but we wont know that for sure for a while.
I will attempt to have pictures this evening, if I can figure out the card reader grandpa Ben brought me. Thank you for your prayers and generosity, we have been so abundantly blessed.
Brent

I just got a report back from Mindy, they did Jarens oxygen test this morning and he was at 102, I just found out that he needs to be close to 200 and stay there to come off ECMO. I have had a runny nose and a sore throat for a couple of days so I have been staying at the Ronald Mcdonald house while Mindy goes to check on Jaren and call back and report, it has been a hard thing to endure, but I don't want to take a chance on making Jaren sick.
Jaren is trying to suck on his fingers, but his breathing tube is in the way, his nurse got him a pacifier and cut the top of the backing off so it doesn't get in the way of his tubes. His nurses dote on him all the time, and ask if he could get any cuter.
Ben is bringing a card reader today so we hope to have pictures soon, (how exciting!)
thats all for now, if I hear more I'll post it asap.
Brent

Great News!

Jaren is doing well, the doctors say he is a strong little baby with a illness fit for a grown up. they do an oxygen test every morning saturday it was in the mid 50's, sunday mid 70's, this morning 88! if he can stay some were above 100 the can start taking him off ECMO treatment.
Yesterday, he held my finger with a strong grip, he is opening his eyes, and will look in the direction of sounds in his room. Comcerns were deafness, blindness, mental retardation, and physical impairments, so far he shows no signs of any, we are so blessed, I am so thankfull for all of your prayers, and have been so humbled by the miracles granted by our Father in Heaven, and heart felt dilligent prayers coming from all over world.
Thank you all, and I pray you all be blessed for all you have done to keep our little one alive.
Brent

update

21 Feb 2009 11:02 am

I just spoke with the nurse, Jaren is doing better today. His blood levels are good and they are hoping to decrease his blood pressure meds this afternoon.
We are so thankful for all the prayers and support by all those willing, he has had two priesthood blessings, and people are praying for him world wide. thank you all and may the Lord bless you for helping keep our little one alive.

Brent

news

The latest report that I have is that Jaren is doing good.

If you want to send notes of your love, concern & encouragement send them to brentlambeth@gmail.com

Basic information

Jaren Douglas L. was born at 11:39 am 18 February he weighed in at 7 lb 10.3 oz and was 20 1/2" long.

Jaren was take to the children's hospital in Kansas City on 19 Feb
Because it was determined that his respirator distress was due to him having Strep B
you can google strep B and get this link

http://www.dhpe.org/infect/strepb.html

To treat this a procedure called ecmo therapy is used see link below

http://www.usc.edu/schools/medicine/departments/pediatrics/divisions/neonatal/parents/assets/ecmo_for_parents.pdf

At the present he seems to be responding OK.

All your prayers are appreciated

Grandpa Ben