Amelia Joy Marohn

Welcome to Amelia Joy's web page.
It has been provided to keep people updated about our little angel.
Amelia Joy was diagnosed with

a serious heart condition called 'Hypoplasic Left Heart Syndrome' when mom (Nikole)
was 18 weeks pregnant through a
regular sonogram. Basically, the left side of the heart
was not functioning. Our family (Jeryl, Nikole, and our
four daughters Hannah, Emma,
Julia, and Isabela)
left Buffalo for delivery at
Cleveland Clinic on
June 21, 2004. Amelia
was safely delivered at
the Cleveland Clinic
on June 23. On June 29th,
Amelia had the

first of three surgeries to repair
her
heart. It was called the Norwood
procedure.
Her second surgery, the Glenn,
was done March
9th, 2005. Recovery has
been amazing and fast.
Amelia had a third
open heart surgery called the Fontan at Boston
Childrens on March 20th ,2008. She has done
very well and she is finally home and we are together as a family. Her recovery from the Fontan was pretty smooth.Thank you for your prayers. Everyday with Amelia is a miracle. Amelia is a survivor because God promised she would be...

Amelia Joy and all her Sibs at the American Falls

Born: June 23 2004 @ 8:00pm

"We shall also rejoice in our sufferings, because we know that suffering produces perseverance, perseverance, character, and character, hope." Romans 5: 3-4

Journal

Wednesday, June 17, 2009 1:54 PM CDT

It has been way too long since I have updated. I am seriously contemplating starting a newer caringbridge for Amelia. I am just not sure how to do it without loosing all the updates we have done and guestbook entries from everyone. Those are extremely precious to us and I do not want them lost. If anyone has any suggestions?
We have not gone to Boston yet. After the sudden death of our little friend Neveah Wallace-I needed more time before we had to head to another hospital for another procedure. I needed to pull it together before we went. I have been very broken since her death. I have pulled away from people. I have been grieving. I hurt so much for this family. I know God is in control but...

Amelia is doing very well. We do head to Boston on August 16th. We will leave after the church service and pre-op work will be done August 17th and the cath will be the 18th. This is not another open heart surgery but it is a procedure to close a hole in Amelia's heart. She will have to spend the night afterwards.

I am having a tough time with this. I am human. I am still stunned at how many people say to me "I thought Amelia's heart was all better now" I love so many of you but do you not all listen when i share with you? We literally do not know how long Amelia's heart is going to hold up. It is working on only 3 chambers. Please also understand that I fully trust God to keep her with us for a long time-He has given our family a huge promise. I am her mommy though and watching her go through all this is unfair. It just plain stinks.
Do not take your healthy kids for granted. Do not take your healthy grandkids for granted-do not do it. I am simply grateful that Amelia is doing so well. I am so very blessed with 6 miracles.

Amelia's birthday is June 23rd. She will be 5. I am in awe of her. I remember
when we first drove home from the hospital with her. She was so little and fragile. What a long way we have come.

Amelia is so spunky. She is strong and has the tendency to come on strong. She is very passionate about certain people and already has sweet little dreams about who she wants to marry. I know the man Amelia will need to marry someday. He needs to have a very special understanding of my daughter. She has a very fragile heart and this man needs to be ready for anything. He should also be a bit older than her...a little more mature and very calm by nature. He needs to be passionate about Jesus. I am praying already about this precious man. ( I pray for all my childrens spouses-I ask God to provide very Godly people for my children...)

Continue to pray for my sweet Amelia. I still cannot believe it has been five years. Wow...so much has happened in that time.

The next month is going to be amazing. Our 16 year wedding anniversary is tomorrow, and Jeryls baby sister gets married July 3rd. Amelia is one of the flower girls for that. Amelia and Hannah share a birthday June 23rd and it is Fathers Day this Sunday. What a wonderfuly packed month. Gd bless you all and thank you for checking in on my very precious miracle...

Nikole Marohn-mommy to Amelia Joy Marohn HLHS almost 5... >sigh<

Hospital Information:

Patient Room: Upstairs, the bottom bunk!

HOME !!
274 Miller Street
NT, NY, 14120

Links:

E-mail Author: eightisenough@mac.com

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.