Closing an open heart

I know it has been a long time since my last post. I think going 100% for the last 3+ years has made me so exhausted that I have just wanted to play "typical" for the last few months. We slowed down the doctors appointments, testing, therapies and research and instead have focused on sleeping in, playing in the yard, BBQ's and movie nights. It has been great!!!

It has been so beautiful watching Ellie GROW (in all areas) these past few months. Since finally reaching a perfectly portioned menu, Ellie has gone from 26" to 28" and now weighs over 16lbs, THIS IS HUGE!!! It has been such a struggle getting to this point (angry ranting blog post soon to follow) that this growth gives us so much hope. She seems so much more alert and present in the moment. She watches us move about the room and giggles at her siblings. It is so exciting to see.

However, there has been a dark cloud hanging over our summer sunshine and it has been talking with Drs about Ellie's heart. As I mentioned before, Ellie has a congenital heart defect known as a PDA (Patent Ductus Arterious). Here is a quick breakdown on what this means:

According to the NIH, "In PDA, abnormal blood flow occurs between two of the major arteries connected to the heart. These arteries are the aorta and the pulmonary artery. Before birth, these arteries are connected by a blood vessel called the ductus arteriosus. This blood vessel is a vital part of fetal blood circulation. Within minutes or up to a few days after birth, the ductus arteriosus closes. This change is normal in newborns. In some babies, however, the ductus arteriosus remains open (patent). The opening allows oxygen-rich blood from the aorta to mix with oxygen-poor blood from the pulmonary artery. This can strain the heart and increase blood pressure in the lung arteries."

We have known about this now for about 2 years since our geneticist first heard the murmur and we have monitored her heart very closely. It was recommended to us that we close  the PDA for several reasons. First, Ellie's left side of her heart is becoming enlarged. We wanted to make sure it was trending this way and not just "beefy" to begin with before having this procedure and it is infact increasing in size. Second, calories....we don't want Ellie losing calories that could go to growth and development instead of pulling double duty in her heart. She is also losing a lot of water in terms of sweating. Everynight I check on her in bed and it looks as if someone dumped a bucket of water on her.

We have chosen to close this now while it is still summer time and not flu season. It scares me to think of going into the time of year where pneumonia is prevalent with a heart condition that effects the lungs.

Here is a link of how the procedure will go. We will be staying overnight and as long as everything goes well, we will be discharged the next day.

The tentative date for this to happen is August 8th. Here is why it is tentative....the hospital says that I am to give Ellie to the nurses where she will go to a room where I am not allowed to go while they administer gas to put her to sleep before they try and get an IV going.  I am not ok with this. My daughter is going to be on high alert already from just being in hospital . How can I put her into someone elses arms, scared, with people she doesn't know, not understanding what is happening as they hold her down helpless? I don't care if this is their "policy" because it is a bad one. I want to be able to hold my baby while she drifts off to sleep. Knowing that mommy loves her and will always be there through the best and worst of times. 

Two other hospitals have allowed me to go back and hold my baby right before a procedure. If this hospital can not accommodate our wishes, then we will reschedule at a different hospital. After all, the hospital is a business and it has to earn ours by way of respecting the wishes of our family. So we will wait and see how this plays out. Either way, we have decided to go through with the procedure. We feel that this is the best choice for Ellie and her well being.

We welcome lots of prayers, well wishes and happy thoughts for Ellie! It is suppose to be a "simple" procedure and I pray that it goes that way.

Farewell words for Ellie's Project...

The speech I gave at the end of the event benefiting Ellie and SWAN USA <3

I would like to take this opportunity to thank:

• Brad, Jessica and Mathew...the loves of my life for helping to put on this amazing event
• Discovery Village for always being gracious hosts and wonderful people
• Chris Olsen at Fondi’s for donating all the fabulous food  
• Stacy, Kim and Ericka for all their help organizing this event
• My Aunt Sue for flying in from NYC to make most of the beautiful baskets you see
• The beautiful and talented musicians -- Chris and Kirsten Gothold   
• All of the people and businesses who so generously donated to the silent auction 
• And, our very special community.

Some of you have been following Ellie's story since the beginning, while others are new to our family of supporters. Ellie is an extraordinary child. She is truly an angel sent here to teach us all about love, kindness and helping others. 

From day one we knew Ellie wasn’t going to be our typical child. With her beautiful uniqueness has come some heart wrenching fears that we never knew existed. A world where there isn’t always an answer. An unexplained disease causing a complex developmental brain disorder, heart defects, failure to thrive, hearing loss, retinal degeneration, cortical visual impairments, extremely small stature, developmental delays, sensory processing disorder, being unable to speak, unable to crawl or walk and 100% reliant on a feeding tube.

If this wasn’t our life and we were looking from the outside in, I would just think that maybe that family didn’t try hard enough. That maybe they just hadn’t seen the right doctor. Someone has to know, right? Well, we have traveled the country. We have seen amazing doctors at the National Institute of Health at the Undiagnosed Disease Program. We have been regulars at Seattle Childrens and Mary Bridge. We have seen the best of the best. I have researched top physicians and have gone as far as tracking them down on there home number and begging them to help my child. We are so blessed to have found the best of the best right here in Washington. Our geneticist Dr. Lawson Yuen. She even made it here tonight to support Ellie. Her support and brilliant mind has made this journey more bearable. We are one of the very lucky ones and I know that if there was an answer to be found, she would find it. 

But in the meantime we wait...days, months, years. Not knowing what to tell strangers when they ask. Not knowing what to tell our other children. Not knowing what to tell ourselves. Wondering what is the prognosis and is there anything we could be doing to make things better while time appears to be slipping away. But as dark and scary as it may seem, there is tremendous beauty that only a child of special needs can bring. Ellie is flawless. Her heart carries nothing but love. She may not be able to speak but she certainly communicates, and that is why we are here tonight. To be her voice. To help families make the journey into the unknown a little brighter whether that be through helping them find answers in costly genetic testing, providing medical equipment when insurance companies say no thank, or even just coordinating a support group where the hugs are free and the coffee is strong. We are not alone as we may feel and seeing this tremendous turnout proves this. 

Thank you all so much for choosing to be a part of Ellie’s journey and supporting us. 

Total amount raised so far...$8353 and growing :)