Baby Ayah's heart promise and more❤

$13,193 of $50,000 goal

Raised by 118 people in 16 months
CW
Chanel Wells
on behalf of Rebecca Wells Poth
 RENO, NV
Here is our little fighter! This is our neice, Ayah Lee Poth.  Baby Ayah was born blind, with holes in her heart, and premature,  and this is just the start. She is five months old. She has already had open heart surgery to address the biggest issue.  This fixed some things, however, she wasn't out of the woods yet.... The past few months have been ...ok.  Bumps along the way, many doctor visits, good news and not so good news.  She recently was admitted to Renown Regional Medical Center, in Reno, Nv, with pneumonia.  We were just there, just gave her kisses for the millionth time, told her we love her, and went on to home and work.  Shorthly after, we got the call that Ayah was getting med evac'd to Salt Lake City's Primary Children's Hospital, again. (those folks there are rad, by the way!)  Long and short, her heart is bleeding into her chest, at the moment.  Thank you. Good Thoughts!

+ Read More
Update: Pi Day/Ides of March

On Sunday we were told that with a little luck we might be getting out Tuesday or Wednesday. Pi day or the Ides of March.

Well, here we are slowly but surely getting things lined up to possibly getting out of here and heading home again tomorrow, the ides of March. Since, the year is not 44 BC and I am not the emperor of Rome I will be looking forward to tomorrow and consider it a good omen. This time, we are hoping to stay a bit longer than 12 hours. We (The medical team, Becca, and I ) have been really trying to make a list and check it twice this time around. Each time we are in the hospital we learn a bit more and I guess in some cruel way it has been several lessons of hindsight being 20/20. But, knock on wood, we are feeling really positive about this time

Ayah has been very stable. She has had a very good weigh gain trend over the last week and has actually been eating more and more by mouth. This is a very big deal for both Becca and I because in her 6 months she has almost always struggled with eating and to see Ayah actually want to eat has been unbelievable.
Her labs have been good and for the last couple days there really hasn't been any reason for her to be here besides paranoia and precaution.

Having Zada here has also been good for the entire family, albeit a lot more work. We were even lucky enough to score some Disney on Ice Tickets on Sunday. We let Zada pick out a ( highly overpriced) souvenir and out of all the dolls, stuffed toys and light up bobbles. Our daughter proudly requested a plain Mickey Mouse Sword. lol. I am sure that there will be many tears and fights in its future :-)

We already are organizing follow up visits for mid-April. Yes, we do still have several operations in our future but, if we can keep those visits planned and not emergency. I know we can handle it.

Big shout out to the Lake Tahoe community and the Tahoe Douglas Rotary Club for all the support. The Annual St Patty Day Celebration fundraiser is this Friday. i am hoping to be there (Green Beard and all). Please check out the online auction and bid to help a great organization.

https://501auctions.com/tdrotary

Once again dealing with all of this would have been much more difficult if not impossible without the help of others. We (Becca, Zada, Ayah and I ) are extremely grateful for all the support. Sometimes just knowing the offer is there is much more helpful than you can imagine.

Speaking as a Family who has been on three medical flights in the last 4 months. It is definitely worth it to become a member of a medical flight network and have that peace of mind. Please seek out a network that works for you and if you don't use it the funds helps pay for others who do.
http://www.calstar.org
https://www.lifeflight.org

Be sure to give blood if you can.
http://www.unitedbloodservices.org/

And support medical and scientific research.
http://honor.americanheart.org/site/TR/Events/General
+ Read More
Update: Light at the end of the tunnel??

Just a quick update.

The last few days have been fairly uneventful. Ayah has now had steady weight gain for 2 days in a row. Yeah!
Also, we have been in the hospital so long with other complications that she is now cleared to do tummy time ( 6 weeks post op from heart surgery)
Ayah definitely has some catching up to do but we are hoping a few weeks or months of good nutrition and minimal set backs could help lots in that area.
We are cautiously optimistic that we might be well enough to head home next week.

On a very sad note, while the last few days have been going by painfully slow, Becca and I know how lucky we are. We had the honor of being invited to a celebration of life on Friday, for one of Ayah's young roommates from the CICU that was not so lucky. It was quite impressive to hear the influence Karl had on the staff of Children's Primary in his 7 short months. This was an experience that really helped put things in perspective and one that no parent or relative should ever have to do. Rest peacefully Karl. Thank you for all that you taught us.

Once again dealing with all of this would have been much more difficult if not impossible without the help of others. We (Becca, Zada, Ayah and I ) are extremely grateful for all the support. Sometimes just knowing the offer is there is much more helpful than you can imagine.

Speaking as a Family who has been on three medical flights in the last 4 months. It is definitely worth it to become a member of a medical flight network and have that peace of mind. Please seek out a network that works for you and if you don't use it the funds helps pay for others who do.
http://www.calstar.org
https://www.lifeflight.org

Be sure to give blood if you can.
http://www.unitedbloodservices.org/

And support medical and scientific research.
http://honor.americanheart.org/site/TR/Events/General
+ Read More
Update: Time flies when your not having fun.

Sorry for the delay in posting. Things have been a bit hectic, not in a life threatening way, just busy.
So, last Sunday, during a pretty bad storm, Zada and I flew to see Becca and Ayah and try to be together as a family. Becca has been in the hospital for almost 2 months and we felt that Zada was starting to struggle a bit without mommy. So, we loaded up the family and flew to Salt Lake. Nothing quite like flying with a 2 1/2 year old after bedtime and on a flight that is delayed well over 4 hours. :-)
After finally arriving at 3 am Zada was extremely excited to see mommy and sister. Now we have been trying to set up some sort of normal life. Because Ayah is on the normal surgical floor Zada can stay in the room with us during the day and we head back to The Ronald McDonald house at night. ( Zada still seems to think it is Donald as in Donald Duck house and we don't see a reason to correct her.)
Zada has met a few friends and seems to be slowly stabilizing with having both parents and her sister around. While, it definitely creates another layer of stress and activity and it also makes work a bit more difficult, Becca and I do feel it was the best decision so far.

ButWhat is keeping us here right now is nutrition. Ayah has been struggling to put on weigh and grow. Since she doesn't have all her intestines, we knew this might be a challenge. We have been adjusting both the volume and calorie concentration to make sure we can get her what she needs and that she can tolerate it. This process has had a few set backs and we have had to start over again several times as we have tried to move to bolus feeds and changed up the fortification mixture of the breast milk. The hope is we can get several stable days in a row and then we and the doctors will feel comfortable with letting us go home. , is looking quite good. So it is Bhopefully just a question of how long she will need those medications as she and her heart grow.
But, what is keeping us here right now is nutrition. Ayah has been struggling to put on weight and grow. Since she doesn't have all her intestines, we knew this might be a challenge. We have been adjusting both the volume and calorie concentration to make sure we can get her what she needs and that she can tolerate it. This process has had a few set backs and we have had to start over again several times as we have tried to move to bolus feeds and changed up the fortification mixture of the breast milk. The hope is we can get several stable days in a row and then we and the doctors will feel comfortable with letting us go home.
Slowly but surely, Ayah is becoming her own case study as the amount of follow up and continued care continues to grow. We actually had a 2 hour care conference with all the specialty heads ( Cardiac, Ophthalmology, Pulmonology, Surgery, ENT, Speech, Nurtition and GI) to discuss priorities, on going care, follow up and coordination with doctors in the Reno/Tahoe area. (I have included a photo of the white board notes)
So another week goes by. But,we still know we are very lucky and hopefully maybe we will be home before the Tahoe Douglas Rotary St Patty day fundraiser. ( I had to put in a plug even though I haven't done much)

Once again dealing with all of this would have been much more difficult if not impossible without the help of others. We (Becca, Zada, Ayah and I ) are extremely grateful for all the support. Sometimes just knowing the offer is there is much more helpful than you can imagine.

Speaking as a Family who has been on three medical flights in the last 4 months. It is definitely worth it to become a member of a medical flight network and have that peace of mind. Please seek out a network that works for you and if you don't use it the funds helps pay for others who do.
http://www.calstar.org
https://www.lifeflight.org

Be sure to give blood if you can.
http://www.unitedbloodservices.org/

And support medical and scientific research.
http://honor.americanheart.org/site/TR/Events/General
+ Read More
Update: Boring is still good! We did have a move forward. We are now on room air and seem to be holding. There is a good chance we might get out of the ICU tomorrow. Even though they are pretty sure what caused the crash when we got home, we do have a lot of tests scheduled throughout the rest of the week. The idea is that we want to make sure we check everything before we go home this time.

No real time line for departure and we have a lot of future surgeries to coordinate. But, it is nice to be thinking continued care rather than crisis care.

Once again dealing with all of this would have been much more difficult if not impossible without the help of others. We (Becca, Zada, Ayah and I ) are extremely grateful for all the support. Sometimes just knowing the offer is there is much more helpful than you can imagine.

Speaking as a Family who has been on three medical flights in the last 4 months. It is definitely worth it to become a member of a medical flight network and have that peace of mind. Please seek out a network that works for you and if you don't use it the funds helps pay for others who do.
http://www.calstar.org
https://www.lifeflight.org

Be sure to give blood if you can.
http://www.unitedbloodservices.org/

And support medical and scientific research.
http://honor.americanheart.org/site/TR/Events/General
+ Read More
Read a Previous Update
Be the first to leave a comment on this campaign.

$13,193 of $50,000 goal

Raised by 118 people in 16 months
Created January 27, 2017
CW
Chanel Wells
on behalf of Rebecca Wells Poth
Your share could be bringing in donations. Sign in to track your impact.
   Connect
We will never post without your permission.
In the future, we'll let you know if your sharing brings in any donations.
We weren't able to connect your Facebook account. Please try again later.
EE
$30
Erin Elliott
15 months ago

Prayers & Blessings for health, and cherishing beauty, kindness and love in the world

RS
$30
Rachel Szumel
15 months ago

In honor of Connor and Anson's birthdays! Hoping this sweet girl can come home soon.

TF
$50
The Risser Family
15 months ago

Shared in love on behalf of Connor and Anson Drew.

WT
$100
Willie & Dianne Takahashi
15 months ago

Love & Blessings

$100
Leslie Kolowith
16 months ago

Our prayers continue for Ayah and your family.

$100
Melinda Luke
16 months ago

God Bless baby Ayah and family.

Be the first to leave a comment on this campaign.
or
Or, use your email…
Use My Email Address
By continuing, you agree with the GoFundMe
terms and privacy policy
There's an issue with this Campaign Organizer's account. Our team has contacted them with the solution! Please ask them to sign in to GoFundMe and check their account. Return to Campaign

Are you ready for the next step?
Even a $5 donation can help!
Donate Now Not now
Connect on Facebook to keep track of how many donations your share brings.
We will never post on Facebook without your permission.