A lot has happened since starting this fundraiser! The ups and downs of Elisha Ezra's heart failure journey can be found on our Facebook page. I will also post as many updates as possible on this fundraiser for the most recent progress on his heart journey.

Please follow on our Facebook for the most recent updates! https://www.facebook.com/share/1BgUgggwiZ/

(Most recent update December 1st 2025)

We got some beautiful pictures of Elisha without his NG tube last week! We are doing a trial without his NG feeding tube! So far isn't going so great... They would like him to be gaining 20 grams every day without the tube.. this week he's only gained 50 grams over 7 days when they'd really like to see 140 gained.. sadly I'm worried the feeding tube might go back in. It's been so nice and he seems so comfortable without it. His weight is still hanging around only the 3rd percentile which is very low. He is 12 pounds 1 oz today at 3 and 1/2 months.

We see his cardiologist in 11 days and get an update on how his blood and heart failure levels are.

Elisha has the sweetest smile I've ever seen and we love him so much we never take a single moment for granted with him and he is extremely spoiled

With his severe dialated hypertrophic and non-compaction cardiomyopathy, this is something he will not be able to live into adulthood with without a heart transplant. We are blessed from G-d with this joyous time he gives us with Elisha now. The medicines he's on should help prolong what his heart can do and put off a transplant for as long as possible. Transplants don't always work and they only last an average of 15 years. We are keeping him as healthy as possible and he is proving to be a miracle and blessing and brings our family so much joy! We never take a single moment with him for granted

(First post from the very beginning)

This fundraiser is difficult to write. I am 30 weeks pregnant with a beautiful (surprise) gender baby.

At my 20 week ultrasound baby was found to have a 2-vessel umbilical cord. This can sometimes be a variation of an otherwise normal pregnancy and my doctor reassured me normally this is nothing to worry about. I had a daughter with a previous heart defect (cor triatratum) that does not affect her and remains innocent and my older daughter is healthy. Due to my older daughter having a congenital heart defect combined with the 2 vessel cord I was referred to have a more detailed routine anatomy scan of baby.

At 29 weeks pregnant another more detailed ultrasound was done of baby. As the heart was being scanned there was an obvious defect that I could see on the ultrasound screen was not normal. I am not in the medical field but I could clearly see the upper right quarter of babies heart vibrating much more rapidly than the rest. I also thought that the heart did not appear normally divided into 4 sections.

The doctor told me that she believes there is a defect in one of the babies atriums. The tricuspid and mitral valves also appear to either be abnormal or missing all together. She said she is not a cardiologist and could not give us a diagnosis.

We got the news from the doctor on Thursday June 19th. On Friday St Louis Washington U hospital called us and arranged us to travel this coming Monday June 23rd (4 hours away from our home in Forsyth MO) to their hospital. The social worker arranged a gas voucher as well as a hotel stay for us to stay Monday night into Tuesday.

The hospital arranged all the specialists, cardiologists, and surgeons to see us and make a plan on Monday and Tuesday. We will know more and have more answers about what to expect Tuesday evening.

This is a very sudden and unexpected surprise. We are struggling to find child care and paying babysitters as well as missing work. My husband is working 2 jobs and we are also both full time college students struggling to make ends meet. We took all of our savings to buy a second vehicle for my husband to be able to stay in Forsyth where we live and be able to care for our older children and continue to work while I am likely facing a very long stay in St Louis with the baby if baby does survive delivery. We honestly don't know if baby will make it at this point.

We are facing a lot of child care costs, transportation costs, loss of wages, among other expenses and are asking for help with these. I will keep everyone updated as soon as we figure everything out and have more updates to share.

Thank you for for joining us being a part of this journey and your support.

Update: Since the St Louis visit with the specialists this week we have found out that baby's heart is too big and the muscle around it is too weak to sustain the heart. They call it a fetal cardiomyopathy. While a lot of babies are born stillborn, most deteriorate shortly after birth when the heart has to start sustaining itself. We are hoping for a stillbirth so the baby doesn't have to struggle and suffer.

The specialists are having us come back Monday June 30th to St Louis again (another 500 mile trip) to test me and my husband's blood to see what genetic conditions we are carriers for. They are also performing an amniocentesis to check for some possible genetic conditions that could have caused this. The specialists are saying this is likely a genetic defect that caused this. It would give some peace of mind to know what.

The prognosis for fetal cardiomyopathy is very poor. We are planning funeral expenses at this point.

7-11-25 Update: I will be posting a lot of updates as we get them! You can keep checking back on this fundraiser for more future updates! Baby is still alive with no signs of hydrops (fluid collection around organs indicating severe heart failure). We are going to hope until we can't hope any more! We are praying baby survives to make it to being placed on the heart transplant wait list!

If baby is still looking stable on the monitors then I will be induced in 4 weeks. If baby starts to show signs of heart failure then they will induce sooner.

Blessings to everyone that has donated it means so much to us to have you on this journey with us!