Daniels Twins Update - Day 32 - Home at Last - Final Report :) - Mon, Feb 20, 2017 at 10:46 PM

What a ride!  We brought our Joseph home to be with his brother Last Thursday!  We got to Primary Children's NICU by 9 am and spent the next six hours checking off every last possible checklist you can imagine :).  Learn to put in the feeding tube - Car seat check (60 min in carseat on the monitor to make sure the O2 didn't drop) - practice feeding though the feeding tube - let the nurse tell us about all the stuff we already know - watch purple crying (again) - Pass of CPR - etc etc etc - after 6  hours we get everything passed off and we head home - exhausted. 

Joseph continues to do well.  He takes about 2/3's of his feeding via a bottle (with thickened milk) and 1/3 via his tube. (We cheat at night doing 100% via the tube ).  His cry is still very soft so we will be watching that. 

Now we settle in the grind ...uuuh... i mean lots of wonderful feedings and holding at all hours of the night ...  until we can get them to sleep through the night :)

Thanks to all for the thoughts, prayers and support.  It is so greatly appreciated and we have been blessed in many ways - seen and unseen. 

Love you all. 

Jason and Kristine  

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So happy for you guys! They are both really handsome little dudes. :-)

--Todd

Joseph's Home!!! - Day 33 - February 16, 2017

What a ride!  We brought our Joseph home to be with his brother Last Thursday!  We got to Primary Children's NICU by 9 am and spent the next six hours checking off every last possible checklist you can imagine :).  Learn to put in the feeding tube - Car seat check (60 min in carseat on the monitor to make sure the O2 didn't drop) - practice feeding though the feeding tube - let the nurse tell us about all the stuff we already know - watch purple crying (again) - Pass of CPR - etc etc etc - after 6  hours we get everything passed off and we head home - exhausted. 

Joseph continues to do well.  He takes about 2/3's of his feeding via a bottle (with thickened milk) and 1/3 via his tube. (We cheat at night doing 100% via the tube ).  His cry is still very soft so we will be watching that. 

Now we settle in the grind ...uuuh... i mean lots of wonderful feedings and holding at all hours of the night ...  until we can get them to sleep through the night :)

Thanks to all for the thoughts, prayers and support.  It is so greatly appreciated and we have been blessed in many ways - seen and unseen. 

Love you all. 

Jason and Kristine  

Joseph's Home!!! Day 33 - February 16, 2017

Joseph Day 33

PCH Joseph's Bed

James and Joseph Together at Last

Daniels Twins Update - Day 31 - Thu, Feb 16, 2017 at 12:27 AM

Keeping in short tonight, if things go well tomorrow (Thursday) we will be able to bring Joseph home from the NICU after 32 days,  late tomorrow evening.   He is eating better, but still will come home with a feeding tube.  

I will send out more details later.

Happy and Tired,

Jason and Kristine

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That is great news! Very happy for you. Although if you wait until tomorrow, it will be 33 days to tie in with the 33rd Ward :-). Never mind, it's not worth it. Can't wait to meet the little guy!

-Todd

Joseph Day 29 - NICU PCH - February 14, 2017

Joseph Day 29

Joseph - Day 28 - NICU PCH - February 12, 2017

I guess time flies when you are busy (and tired), sorry for the delayed report, but here is where we are today: 

James - Still at home, eating well, sleeping lots weighs a little over 8 lbs.  Funny story - we found out he doesn't "like" Walmart Soy formula (as in throws it up) but "likes" Smith's Soy Formula (GO FIGURE!)

Kristine - Continues to feel better, but not used to get C-Sections nor for the recovery time from them either. 

Joseph - 

As of Today 28 days in the NICU. The big concern for the last week is can he eat from a bottle safely.  Apparently this is a hangup for lots of babies, as the primary issue is resolved, they get are delayed going home because they haven't figured out how to eat via a bottle/nurse.  The Occupational Therapists (OT) are great at working with Joseph and after feeding him a couple of time had him get a swallow study.  They were concerned that he was silently aspirating into his lungs because he would experience either a O2 de-saturation, or elevated heart rate when ever he was fed even 1/3 an ounce.  

For the swallow study they had him drink some Barium (NOT FUN - I guess) while they X-rayed him which showed that when he drinks a slightly thickened formula (they call it nectar), he has no issues at all (FANTASTIC).   With that figured out, they changed the orders so that at every feeding he could be feed 1/2 an ounce of nectar.  That was last Friday...and it has been working.  He got 3 more feedings on Saturday and had all three so far today.   Which he is taking quite well.   Assuming this keeps up, I am guessing that they will up his feedings more tomorrow (GOOD). 

Coming Home - They are talking about sometime in the next week of him coming home - even if it is with the Feeding tube (aka NG Tube).  It just means that Kristine and I have to know how to put one of those tubes in. :)

The "Getting Joseph Home List"

• Get off the ventilator - Done 1/30
• Turn off the heater - Done 1/31
• Get off all oxygen - Done 1/31
• Remove the PICC line - Done 2/4
• Start feeding orally - Partial 2/1
• Swallow 15 mls with each feeding 2/11 :)
• Swallow 30 mls (1 oz) with each feeding
• Swallow 60 mls (2 oz) with each feeding
• Get all food orally via bottle
• Gain weight for several days
• 2/2  ->  3350 grams
• 2/9   -> 3540 grams
• 2/10 -> 3560 grams
• 2/11 -> 3720 grams
• 2/12 -> 3700 grams  (8lb 2 ounces)
• Pass the carseat test - (maintain oxygen levels while in the car seat)
• Doctor give the thumbs up.

- Jason and Kristine

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Good progress! Thanks for the update. Can't wait until he gets home!
-Bishop Gurney

Joseph -Day 22 NICU PCH - February 7, 2017

Joseph Day 22

Joseph Daniels NICU Update - Day 22 - Mon, Feb 6, 2017 at 10:50 PM

All, 

Thank  you so much for your continued thoughts and prayers, they mean so much to us!  The support is truly wonderful!

I have a frustrating update for today.  The physical therapist feed Joseph this morning a grand total of 7 milliliters, his whole feeding is a total of 62 milliliters - only ~10% of what he needs (BUMMER).  The bigger problem is that while he was feeding, his heart rate noticeably slowed down - worried right!? (BTW - NOT GOOD).  The current working theory is that his vocal cords (The vocal cords protect the lungs from getting liquid from getting in) are still swollen from the surgery and have tentacles from the cyst behind them, and are not shutting all the way (NOT GOOD).  Despite our hope to the contrary, they are recommending that he stay for another week or two ( BUMMER!!!).

As bad as we want our little dude home, we want to make sure he will be safe before we can do that.  We just have to dig in and be patient until that happens. 

Love you all

Jason and Kristine

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Yeah, bummer to hear he'll have to stay. We'll keep him in our prayers!
--Jeremy White

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Ah, that is a bummer. Very sorry to hear that. We all want little Joseph home very soon! We'll keep praying for improvement and recovery.

Thanks so much for the update.

--Bishop Gurney

Joseph - Day 20 - NICU PCH - February 5, 2017

 Saturday - Sun, Feb 5, 2017 at 12:45 AM

Joseph continues to improve and do better.  He is off all respiratory support - no ventilator, no cannulas, no oxygen (GOOD).  He is off all narcotics for his pain - down to only Tylenol (GOOD).  The PICC Line in his leg was taken out today (GOOD).  He is now getting Mom's milk via a feeding tube and is now up to a full feeding (GOOD).  The nurses noted he was much happier with a fully tummy which allowed them to stop the Morphine and Ativan.  There is one hitch - he can't eat orally (BAD). Unfortunately, he didn't start eating anything orally until he was 17 days old, has a swollen, painful throat.  While he is getting 2 ounces with each feeding, he is only swallowing a few drops.   The hope and expectation is that as the swelling goes down he will swallow better.  He also sounds raspy as he breaths, (if it wasn't for the oxygen monitors you would think he was having a hard time breathing), but we are starting to notice the raspiness is SLOWLY getting better. 

The "Getting Joseph Home List"

1. Get off the ventilator - Done 1/30
2. Turn off the heater - Done 1/31
3. Get off all oxygen - Done 1/31
4. Remove the PICC line - Done 2/4
5. Start feeding orally - Partial 2/1
1. Swallow 10 mls with each feeding :( -- NOT YET
2. Swallow 30 mls (1 oz) with each feeding
3. Swallow 60 mls (2 oz) with each feeding
6. Get all food orally via bottle
7. Gain weight for several days
1.  Currently 3350 grams
8. Pass the carseat test - (maintain oxygen levels while in the car seat)
9. Doctor give the thumbs up.

- Jason and Kristine

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Thanks so much for the update. Yes, I will send out the ward update here in a minute -- I appreciate you preparing that. I know it's a little tough to not see progress as quickly as we'd all like, but I'm glad he continues to improve. We'll keep praying for his well-being. Speaking personally, it was a sweet thing to be able to fast in his behalf today. I've never seen the little guy in person and I love him already!

-Bishop Gurney

Joseph - Day 19 - PICU PCH - February 4, 2017

Rebekah, Grandma Kathryn, Alisha and Kristine were able to go and visit Joseph today.

Grandma and Joseph

Joseph Day 19

Rebekah and Joseph

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Response from your updates -  Sat, Feb 4, 2017, 8:43 AM

Jason,  I thought I would pass on some of the comments from the family.  All are praying and thinking of you and your family.

From Bete:

We’ll join in the fast!  Praying for your little guy.

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From Teresa Owen:

Thank you for these updates. I watch for them daily to see Joseph's progress. Hugs to Jason and Kristine and all. 

With love,

Teresa
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From Teresa Olsen:
Love that he is healing. continued prayers and love.

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From Pat:

I've been following the updates and I am pulling for every one. 

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 From Judy:

This is such great news!!  Please send on our best wishes and know that Joseph and the family remain in our prayers!!

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From Donald:

Sounds like thing are getting better day by day!

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Anyway,  just thought I would pass this on.  Cyndy also sends her love and support.

Have a great day!

Love you, Mom

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Hi all,

If you're willing and able, we'd love to have you remember the following in your fast tomorrow:

* Daniels -- particularly baby Joseph who is still up in Primary Children's Hospital; hopefully he will be able to come home soon.

* Cheryl Evenson -- now home from the hospital and on oxygen

* Romneys -- twin babies should be arriving very soon

* Kristen Parker -- Kristen fell on the ice a couple of weeks ago and had a severe tear in her hamstring. She had an MRI this week and may need surgery. She's been in a considerable amount of pain.

Thanks for your selfless caring for our ward members!

Love,

-Bishop

Joseph - Day 18 - PICU PCH - February 3, 2017

Joseph Day 18

Joseph Day 18

Joseph - Day 18 - PICU PCH - February 2, 2017

Daniels Twins Update - 2/2 - Thursday - Thu, Feb 2, 2017 at 11:26 PM
We got to hold Joseph quite a bit in the last couple days and he is getting big and looks good. The problem is he is now 17 days old and has never had to nurse or take a bottle - so now he has to learn ;). Today the Physical Therapists came around noon and checked him out.  He has a strong desire to suck, but is having a hard time getting all the milk down his little throat - he could only drink 1/5th an ounce before he got tired.  The camera they put down his throat (flexible laryngoscopy ) confirmed that there is swelling and that there are no other obvious issues.  The swelling and associated pain will make it hard for him to swallow and the doctors all think it should improve in the next 5-7 days.  Still no good estimate on when he gets to come home. 

Another note, the cyst pathology came back and is confirmed to be benign (DOING THE HAPPY DANCE!!!!)

Final note: My ward is doing a fast for Joseph this coming Fast Sunday, if any of you are so inclined will add our little dude to your fast as well? Specifically, that his throat will heal quickly and he can learn the coordination needed to suck and swallow. 

Joseph Day 17

Joseph Day 17

The "Getting Joseph Home List"

1. Get off the ventilator - Done 1/30
2. Turn off the heater - Done 1/31
3. Get off all oxygen - Done 1/31
4. Start feeding orally - Partial 2/1
1. Swallow 10 mls with each feeding
2. Swallow 30 mls (1 oz) with each feeding
3. Swallow 60 mls (2 oz) with each feeding
5. Get all food orally via bottle
6. Gain weight for several days 
7. Pass the carseat test - (maintain oxygen levels while in the car seat)
8. Doctor give the thumbs up.

Thanks for all the continued love and support. 

Jason and Kristine
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Hi all,

Joseph Daniels is steadily making progress as well but is still up at Primary Children's. As a reminder, we'll have a special fast for the Daniels, Cheryl Evenson, and the Romney's (twins coming very soon) this Sunday.

Thanks!

-Bishop
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Anne, 

Would it be ok to meals for one more week starting on Sunday?  I can't predict exactly when Joseph will come home, but I am hopeful that with one more week we can jump that hurdle and get life back to normal.  

For the time being, with just James at home Kristine is handling things well enough that no one needs to come over. With Kristine's Mom has been watching the kids in the mornings and with your help watching Kaitlyn in the afternoon's, it is quite manageable. 

Would that work? Let me know what you think. 

With much appreciation and thanks

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Jason, we're happy to help as long as needed(:

Thanks Anne for heading this up!

-Trish Coburn

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Amen to both comments! (We're here to help, and thanks to Anne!)

--- Bishop Gurney
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Dear Relief Society Sisters,

Jason and Kristine Daniels have asked me to express to you their thanks for the many meals and hours of service you have given to their family the past few weeks. While Joseph's condition is improving a little everyday, they are still having to spend time traveling to the hospital to be with Joseph, which places a burden on the children at home

We have offered to provide meals for one more week, in the hopes that Joseph will be home soon, and they can establish a "new normal" at home!

If you are able, please sign up on the attached google docs sign-up sheet.  Keeping in mind the Daniels family has some dietary restrictions (no dairy, eggs, onion or mustard).  For meal ideas see the additional google docs page.

Thank you so much for your Christ-like service, in providing RELIEF to this family,

The Relief Society

Joseph - Day 16 - PICU PCH February 1, 2017

Daniels Twins - 2/1 - Wednesday - Wed, Feb 1, 2017 at 11:54 PM

Joseph has now been off the ventilator for just over 2 days and continues to do well (GOOD … I mean ... AWESOME).  They have backed off the oxygen from 2 Liters @ 100% to 2 Liters @21% then to 1 Liter @ 21%  and then today at 12:30 pm they took him off it all together and his oxygen saturations levels stayed high (GOOD).  The poor kid has had 5 intubations and surgery down his throat and so still sounds raspy when he breaths (NOT GOOD), however, his lungs sound good and clean(GOOD).

They started him on Mom’s milk again this morning (1/3 ounce per feeding) . He sucked down his first feeding via a bottle, but struggled with the rest of the feedings.  He had enough problems the nurses engaged with the “Speech Pathologists” - to work with him to teach him how to suck . . . go figure ;).    

We got to go up and hold him for the first time without oxygen tubes stuck to his head.  He definitely resembles his brother Jacob and has the webbed toes (2nd and 3rd) to boot.

Joseph - 2 weeks - oxygen and ventilator free =)

Joseph 2 weeks

The "Getting Joseph Home List"

1. Get off the ventilator - Done 1/30
2. Turn off the heater - Done 1/31
3. Get off all oxygen - Done 1/31
4. Start feeding orally - Partial 2/1
5. Get all food orally via bottle
6. Gain weight for several days 
7. Pass the car seat test - (maintain oxygen levels while in the car seat)
8. Doctor give the thumbs up.

We are getting anxious for our little guy to come home.  However, patience is the key for the next while so when he comes home, he gets to stay home.

Jason and Kristine