Noah Jordan's Journey To Transplant

$13,868 of $50k goal

Raised by 436 people in 25 months
Rachel Knickerbocker  HUNTLEY, IL
***** THIS IS NOAH'S REAL ACCOUNT RAN BY HIS MOM AND DAD..NOT THE FRAUDULENT ONE FEATURED ON THE NEWS*****




 
Facebook.com/NoahsJourneyToTransplant

Noah Jordan is a 12 week old little boy born on August 5th 2014 who is listed status 1A(most urgent) for a heart transplant. Noah is unique because he had a balloon dilation of his aortic valve done at 29 weeks pregnant in Boston, MA. Noah was blue at birth and immediately intubated. He had his second balloon dilation done at 12 hours old. When Noah was just 3 days old, the team of doctors informed mom and dad that there was no saving Noah's heart, and the only possibility for a normal life was a heart transplant. At 2.5 weeks old Noah had heart surgery, this surgery was a Coarctation repair. When Noah was 26 days old he was extubated, although doctors did not think he would last long off the vent he proved them wrong.

Present day- Noah is continuing to fight. He is hospitalized waiting for his new perfect heart. 

 
Funds received will go to any medical expences that are not covered, and relocating the family closer to the hopsital once discharged.  Once discharged, mom will continue to not work and stay home to care for Noah, with big brothers help!

Here is the long version of Noah's journey from pregnancy until now -

Noah Jordan’s Journey to Transplant.

In mid-December of 2013 we found out we were expecting our second child. We found out we were having our 2nd little boy and the pregnancy had been easy and normal. At 22 weeks we had an ultrasound, the tech had the doctor come in regarding the baby's heart. The doctor said she wanted me to see a cardiologist although it is "probably nothing". At 24 weeks we went to the fetal cardiologist. We thought that everything would be fine because of what my doctor said. How could anything be wrong with our baby, right? Wrong. Immediately we knew something was very wrong with our baby by the look of concern in the doctor’s face. The doctor spent an hour looking at our baby's heart, but it felt like it was hours and hours. By the time he was done with the echo the office was closed and he asked us to meet him in the conference room to discuss our baby's heart. The doctor met us in the room, he was visibly sad for us. We had no idea what was about to be said would forever change our lives. The doctor gently told us "your baby is very sick. He has Critical Aortic Stenosis with evolving HLHS (hypoplastic left heart syndrome), Coarctation of Aorta, and severe Mitral Valve Regurgitation".     

Aortic Stenosis: The aortic valve is narrow which prevents the valve from fully opening. This prevents blood flow from your heart into the aorta and the rest of the body. The heart is working extra hard and then, becomes weak.
HLHS (hypoplastic left heart syndrome): The left side of the heart is extremely underdeveloped and insufficient. The left side of the heart is unable to normally pump blood to the body, making the right side of the heart pump harder. The right side is then responsible for pumping blood to the lungs and the rest of the body. 
Mitral valve regurgitation: The mitral valve is not closing enough and causes blood to leak backward into the heart.
Coarctation of the Aorta: A narrowing of the aorta. The aorta is a large blood vessel that delivers oxygenated blood to your body.

The doctor explained to us what this meant and drew us a picture that I still hold onto. He told us with a very heavy heart that our baby's chance at making it to birth or long after birth was very low. But, he gave us hope with only one option. He told us of a very intelligent doctor named Dr. Tworetzky who is at Boston Children's Hospital.  He explained to us that Dr. Tworetzky and his team do fetal intervention on these babies with Aortic Stenosis with evolving HLHS. He kept it short while explaining the fetal intervention because he had to send our echo off to Boston and find out first if we were candidates for this procedure. What he did tell us was that this team of doctors using a needle enters the mother stomach, enters the baby's chest and goes into the aortic valve and tries to successfully balloon it open. We had never heard of anything like this and were truly amazed. The doctor sent us home and told us to return 3 days later on Friday morning.  Friday also happened to be the day we were supposed to go to the Dells with our 2 year old. We decided to go on the trip still as we had been talking with our son about it for some time. That Friday's appointment was to take a good look at the rest of the baby, and thankfully everything else was great! We knew our call regarding if we were able to go to Boston to be evaluated and see if we were candidates for fetal intervention could come at any time. On our last day at the Dells, we received the call; I was too scared to answer and had my husband answer it. Boston wanted us! It was a very surreal moment. We went back home and shortly after, on June 3rd we flew out to Boston, MA.

June 4th.
Early in the morning, we arrived at Dr. Tworetzky’s office. He was doing an echo to determine if we would in fact be able to have this fetal intervention done. We were so nervous. Shortly into the echo, Dr.  Tworetzky let us know that the baby is a great candidate! Wow! He told us that as long as the rest of the team finds me to be healthy that the intervention would happen the following morning! Everything checked out great with my health as well. After a long 10 hour day at the hospital and meeting doctor after doctor after doctor we were sent back to the hotel.

Fetal Intervention: While a doctor is performing an ultrasound, another doctor is entering the mothers stomach with a long hallowed needle, then the baby’s chest, and then into the aortic valve. Once inserted into the aortic valve, a third doctor puts a long wired balloon through the needle and tries to successfully balloon open the aortic valve. The highest risk associated with fetal intervention is loss of the baby. 

June 5th.
We arrived at labor and delivery at 7am while the doctors and nurses got everything prepped for the OR. I skyped with our son who was with my mom and dad. I cried and cried while I talked to him because I was so terrified for what was about to happen. Before we knew it, it was time to go back to the OR. I was very scared. The next thing I can remember is trying to pull my oxygen mask off. Then, I fell back asleep and my next memory is being pushed back to my recovery room. This is when Dr. Tworetzky was walking next to me and told me that it was a "technical success"! I cried tears of joy! We went back to the room and met my husband, we were so relieved. We spent the next 24 hours inpatient as they monitored the baby. Before we were discharged we met with Dr. Tworetzky who did another echo. He told us that the baby's aortic valve was functioning better, not anywhere where it needed to be, but better than it had been. What a relief. What an amazing and brilliant team of doctors. Finally, it was time to return home.

Fast forward- 33 weeks pregnant.
There had been no changes with the baby's heart function, not for better or worse. I started my follow up appointments at a great hospital that was recommend by Boston 1.5 hours away from home. At my 33 week appointment, the doctor told me my amniotic fluid was dangerously high (42mm :/ ). The doctor gave us the option of moving within 10 minutes of the hospital, or being admitted. This was due to the high risk of preterm labor due to excess amniotic fluid and the danger to the baby if I’m unable to get immediate medical assistance. This was said on a Tuesday, that Friday we were temporarily living within 10 minutes of the hospital.

36 weeks 2 days pregnant - August 5th
At 8:32pm my water broke. At 11:32pm Noah Jordan was born 8lbs 6oz and 19 1/4inches. He cried and cried but was turning a not so pretty blue color. He was immediately ventilated. At 8 hours old Noah was moved from the NICU to the CICU. The head doctor of the CICU told us that our child was the sickest kid in the unit. At least 15+ doctors surrounded our very sick, helpless baby while they tried to determine what was next. The decision was made to get him into the catheterization lab and do another balloon dilation of his aortic valve. At 12 hours old, Noah had his second balloon dilation. He was no longer blue after this procedure, but still very ill.

August 8th - 3 days old
At 3 days old, two of the head doctors sat us down to talk. They told us that our baby was very ill and had a very sick heart. They talked about possible surgeries that could be done, but did not think that any would benefit him. They told us that Noah's best chance at a normal life would be- a heart transplant. Our world fell apart. I spent the whole conversation crying while my husband listened very well to all this entailed. At 3 days old Noah Jordan was added status 1A to the heart transplant list. I had hopes that we wouldn't have to wait that long for a new heart, maybe a few weeks or a month. Wrong.

Heart transplant status 1A- most urgent.

August 18th - 13 days old.
At 13 days old Noah was not doing well. The doctors were discussing doing a surgery. The surgery that was originally decided on was the Ross Procedure. That following Thursday on August 16th  Noah was 16 days old and scheduled for the OR at 9am. At 8am that morning while the nurses were getting Noah prepped, the head of the CICU came in to speak with us. She told us that Noah had been doing better the past couple of days and none of the doctors felt comfortable doing this big surgery on him anymore. Instead, it was decided that Noah would have a “smaller” procedure done- a coarctation Repair. This surgery greatly helped Noah.

Ross procedure: Open heart surgery. The aortic valve is replaced with the patient’s own pulmonary valve.
Coarctation repair: Removing the narrowed section of the aorta, and then connecting the two ends of the aorta together.

August 26th - 21 days old.
Today was a very big day for us and Noah. Today was the day that we finally got to hold our sweet boy for the first time. No parent should ever have to wait to hold their child

August 31st (also Noah's due date) - 26 days old.
Today was a day we had long been awaiting. It was the day he was going to be extubated. The doctors told us that there is a very high possibility that he may not be able to handle it, and need to be intubated again. Noah proved them wrong; he has been on oxygen and not needed to be intubated again.

October 27th – 11 weeks old.
 Noah is continuing to fight. He has been through so much at only almost 3 months old. He has come a long way, much further than anyone thought. Noah is incredibly strong and very loved. I think Noah can teach us all something. Please keep our sweet baby in your thoughts and prayers while he continues his journey to transplant and recovery.
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Update 22
Posted by Noah's Journey
20 months ago
March 27th 2:29am

Noah is in the ICU, again. I will update later.


March 27th 6:05pm

Noah was moved from the ICU to the CICU this morning. He was extubated this afternoon. I will post a detailed update tonight. Thank you all for your prayers and kind words.


March 30 9:55pm


Hi everyone. I realize my update is coming much later than I had promised. I am sorry. Bear with me, this will be long..

As you all know, Noah was discharged from the ICU on Friday March 20th. He came home on an antibiotic and his last dose was due Friday night(March 27th). Everything had been going well since Noah was discharged from the ICU and there were no signs or symptoms of any problems. Thursday was like any other day, Noah went down for a nap around 4 pm and woke up close to 6. When he woke up, he seemed to be more quiet than he normally is. We were all sitting in the kitchen, and then Noah's face and lips turned greyish in color, he was cold, his hands and feet were modeled and his temp was 103.6. We left for the ER. Once we arrived there, his heart rate was sitting at 200+ and he had become much more grey in color. They started him on IV fluids and also Epinephrine to help with his cardiac output. We were then moved up to the ICU where he was continuing to stuggle with breathing and had a very elevated resting heart rate. They did an echo, ekg and blood work and determined that (thankfully) his heart was fine. They then determined that he was in septic shock(we never found an orgin). The decision was then made to intubate before anything got worse. He was successfully intubated and then had a line placed in his leg to deliver him his epi, fentynal, dexmedetomidine, antibiotics, and additional steroids (to treat the sepsis). Friday morning, we were moved down to the CICU. Noah was successfully extubated Friday afternoon. His fever has been gone since Friday. Noah is on an anti rejection med Tacrolimus, that they montior the level through blood work in the morning before giving his med. His goal level is between 10-12, which he is generally at. There was one occasion before we went home from the hospital the first time that it was 17, but they were able to bring it back down. Here is where things get messy.. Thursday evening they checked his tacro level and it was a perfect 10. Saturday his BUN and Creatinine, which indicates kidney function were high, so they expected a high tacro level. Turns out, the tacro level was low and only 3, so they continued to give him his normal morning and evening dose. Saturday, his tacro level came back at 50! This is a critically high toxic level! Noah had started to act very off before the results had even came back, he was irritable and just sleeping the day away with no desire to be awake. They decided to not give his tacro. They wanted to be sure it was an accurate level, so they drew again Saturday night. That tacro level was 47.7. Sunday his level was 40.9. There was another med level that was high in his blood as well. This was NOT a pharmacy error, there was an issue with how his body was metabolizing his meds. Noah slept all night Friday, all day and night Saturday, and all day and night Sunday with short infrequent periods of being awake. Today Noah spent much more time awake and not irritable! We assumed his tacro level had significantly came down, which was confirmed when it came back at 16.4. Noah has had a much better day today and is acting more and more like himself. They had discontinued his feeds Thursday when he was admitted and started them up today. Tomorrow is a new day!

Sorry again for the late update!
Thank you all for your prayers and kind words. Noey(nickname big bro gave him) is so loved!



April 4th 9:01pm

Update-

While trying to find the source of Noah's sepsis the doctors ran MULTIPLE blood and viral swabs with nothing coming back positive, until ------ Rotavirus. Rotavirus was positive. The thought is that Noah's body being so fresh out from transplant just couldn't handle the virus and it put him into shock. The Rotavirus vaccine is live, so Noah was not able to receive it, and never will be able to receive any live vaccinations due to the transplant. We are not entirely sure where the exposure happened as we haven't taken him anywhere besides the ER. Which very likely could have been the place of exposure, even though we don't wait in the waiting room and go straight to a room. Since Rotavirus is a virus, there is nothing that can be done to treat it. Noah's tacro level has stabilized and for the time being we will monitor it daily... outpatient! Noah was discharged from the hospital yesterday! :-) Noah's routine 3 month biopsy was scheduled for this upcoming friday, but has since moved up to this Monday. There is nothing to suggest that Noah is in rejection. Noey is definitely happy to be home! Thank you all for your continued prayers, kind words and support especially while we went through this last scary CICU stay.


April 5th 11:18pm

We hope you all had a great day! We had a fantastic Easter. It was our first holiday that we were all home together. It was amazing!

We wanted to thank you all for your support throughout Noah's journey thus far. Majority of you are total strangers, and it is incredible to read through comments and see how much all of you love and care about Noah. You have been through good and bad with us, and we wanted to thank you for your love.

Tomorrow is Noah's routine 3 month biopsy. It will be on an outpatient basis, and unless there is concern, we will be sent home after recovery. We will keep you posted on biopsy results which will take a couple of days. Prayers for an uneventful biopsy are very appreciated.

Thinking of our donor family always. Wishing we could give them a hug. God bless you, whoever you are.


April 6th 12:39

Biopsy is done and was uneventful! We will update when the results are in. Thank you all for the continued prayers and love!
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Update 21
Posted by Noah's Journey
20 months ago
Hi everyone. I realize my update is coming much later than I had promised. I am sorry. Bear with me, this will be long..

As you all know, Noah was discharged from the ICU on Friday March 20th. He came home on an antibiotic and his last dose was due Friday night(March 27th). Everything had been going well since Noah was discharged from the ICU and there were no signs or symptoms of any problems. Thursday was like any other day, Noah went down for a nap around 4 pm and woke up close to 6. When he woke up, he seemed to be more quiet than he normally is. We were all sitting in the kitchen, and then Noah's face and lips turned greyish in color, he was cold, his hands and feet were modeled and his temp was 103.6. We left for the ER. Once we arrived there, his heart rate was sitting at 200+ and he had become much more grey in color. They started him on IV fluids and also Epinephrine to help with his cardiac output. We were then moved up to the ICU where he was continuing to stuggle with breathing and had a very elevated resting heart rate. They did an echo, ekg and blood work and determined that (thankfully) his heart was fine. They then determined that he was in septic shock(we never found an orgin). The decision was then made to intubate before anything got worse. He was successfully intubated and then had a line placed in his leg to deliver him his epi, fentynal, dexmedetomidine, antibiotics, and additional steroids (to treat the sepsis). Friday morning, we were moved down to the CICU. Noah was successfully extubated Friday afternoon. His fever has been gone since Friday. Noah is on an anti rejection med Tacrolimus, that they montior the level through blood work in the morning before giving his med. His goal level is between 10-12, which he is generally at. There was one occasion before we went home from the hospital the first time that it was 17, but they were able to bring it back down. Here is where things get messy.. Thursday evening they checked his tacro level and it was a perfect 10. Saturday his BUN and Creatinine, which indicates kidney function were high, so they expected a high tacro level. Turns out, the tacro level was low and only 3, so they continued to give him his normal morning and evening dose. Saturday, his tacro level came back at 50! This is a critically high toxic level! Noah had started to act very off before the results had even came back, he was irritable and just sleeping the day away with no desire to be awake. They decided to not give his tacro. They wanted to be sure it was an accurate level, so they drew again Saturday night. That tacro level was 47.7. Sunday his level was 40.9. There was another med level that was high in his blood as well. This was NOT a pharmacy error, there was an issue with how his body was metabolizing his meds. Noah slept all night Friday, all day and night Saturday, and all day and night Sunday with short infrequent periods of being awake. Today Noah spent much more time awake and not irritable! We assumed his tacro level had significantly came down, which was confirmed when it came back at 16.4. Noah has had a much better day today and is acting more and more like himself. They had discontinued his feeds Thursday when he was admitted and started them up today. Tomorrow is a new day!

Sorry again for the late update!
Thank you all for your prayers and kind words. Noey(nickname big bro gave him) is so loved!
+ Read More
Update 20
Posted by Noah's Journey
21 months ago
Update -

Life at home is so great! Noah is so happy and doing so well. All labs/echos/clinic visits have been great! It is a true blessing that Noah is doing so well. I think of our donor family constantly. Questions about them run through my head. I wish I could give them a hug. My heart hurts for them.

Thanks to all of your generous donations, we were able to put multiple months rent down on a home closer to the hospital where Noah will have frequent care at. Not only were we able to do that, we were also able to replace all of the carpet(new carpet was well overdue!), paint the whole place(with no reimbursement on either) and buy all the household necessities we needed moving into a new home!(we unfortunately lost a lot of bigger items in storage to mold) We are SO thankful for all of the generous donations we received. We would not be where we are today without your help. Thank you! We are still accepting donations and every penny gets put to good use and truly helps us. Life is good - God is good! Thank you all so much for your love, support, prayers, and donations. We are blessed!
enjoying playing with big brother!
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Update 19
Posted by Noah's Journey
21 months ago
08-05-14 at birth
08-05-14 at birth
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Read a Previous Update
Help spread the word!
 4.5K total shares
Lisa Lissner
22 months ago

Please post an update.

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Lisa Lyons
22 months ago

my prayers are you and your family ... My son had a heart transplant for hlhs at 26 days old ... he is now 19 and in college .. we are so very proud of him .... Noah will do great ..

+ Read More
Libby Giuntoli
22 months ago

I'm so happy Noah is doing so well. Praying for you all every day!

+ Read More
Laura Pfeifer
22 months ago

as I said when I donated, my heart really goes out to you and your family because my baby girl is about the same age and Noah was born on my birthday! Not that someone should not care about your situation anyway, but I really do feel connected. I will be praying daily for your family and sharing your story with my children. (to an extent that they can handle and understand) I appreciate your taking the time to send out updates as I can imagine you might struggle to find the mental energy to do so! Hang in there and God bless.

+ Read More
Amelia Garey
23 months ago

im sorry i cant donate at present time but he is in our prayers

+ Read More
LeAnn Robertson
23 months ago

If you are donating to Noah, please contact his mother on her Facebook. A man named Ken Willis started an account for baby Noah and then refused to give the money to the family. He claims he gave some of it to charities that helped the family but will not give the balance to the family. The article is on Yahoo.

+ Read More
Nikki Wolfe
23 months ago

Sending prayers to your sweet boy and. Family. Never lose hope..no matter what Bad news is said,the lord has the final say

+ Read More
Lisa Simmons
23 months ago

Thinking of you all as I just found Noah's page. I hope he soon receives the heart he needs. I had speciality surgeries as a child and met many patients at Ronald McDonald house who were kids getting heart transplants; the transformation and ability to bounce back is amazing!

+ Read More

$13,868 of $50k goal

Raised by 436 people in 25 months
Created October 26, 2014
Rachel Knickerbocker  
CH
$20
Calvin Huckabone
8 months ago
$25
Anonymous
8 months ago
$15
Anonymous
15 months ago
MS
$20
Morgan Sussman
15 months ago
$5
Anonymous
16 months ago (Monthly Donation)
CG
$5
colleen kelly ginter
16 months ago

God Bless you sweet loves.

SW
$20
Sandra wilson
16 months ago
RM
$25
Redonia Moore
16 months ago

Dear Noah, I had heart surgery four months ago, we will be praying for you, sweetheart.

LM
$20
Lynn Maudet
16 months ago
$10
Anonymous
16 months ago
Lisa Lissner
22 months ago

Please post an update.

+ Read More
Lisa Lyons
22 months ago

my prayers are you and your family ... My son had a heart transplant for hlhs at 26 days old ... he is now 19 and in college .. we are so very proud of him .... Noah will do great ..

+ Read More
Libby Giuntoli
22 months ago

I'm so happy Noah is doing so well. Praying for you all every day!

+ Read More
Laura Pfeifer
22 months ago

as I said when I donated, my heart really goes out to you and your family because my baby girl is about the same age and Noah was born on my birthday! Not that someone should not care about your situation anyway, but I really do feel connected. I will be praying daily for your family and sharing your story with my children. (to an extent that they can handle and understand) I appreciate your taking the time to send out updates as I can imagine you might struggle to find the mental energy to do so! Hang in there and God bless.

+ Read More
Amelia Garey
23 months ago

im sorry i cant donate at present time but he is in our prayers

+ Read More
LeAnn Robertson
23 months ago

If you are donating to Noah, please contact his mother on her Facebook. A man named Ken Willis started an account for baby Noah and then refused to give the money to the family. He claims he gave some of it to charities that helped the family but will not give the balance to the family. The article is on Yahoo.

+ Read More
Nikki Wolfe
23 months ago

Sending prayers to your sweet boy and. Family. Never lose hope..no matter what Bad news is said,the lord has the final say

+ Read More
Lisa Simmons
23 months ago

Thinking of you all as I just found Noah's page. I hope he soon receives the heart he needs. I had speciality surgeries as a child and met many patients at Ronald McDonald house who were kids getting heart transplants; the transformation and ability to bounce back is amazing!

+ Read More
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