Not just Ellie's Heart

I don't know if I will ever forget this night, sometimes I wish I would but it has made such an impact on my heart I really don't think I can.

Two years ago today, Ellie took the ride of her life.

Today I spent the day at St. Gabriel's Hospital in the ICU. I was in clinical, it was a pretty simple day. Ellie spent the day with Grandma and Hadley. Robert spent the day at work.

Today I thought about the significance as I was driving to Little Falls. Then I was whisked away into medical land until I was deep in conversation with the woman at Little Falls who offers faith support. She mentioned having to do a walk soon as a fundraiser for her daughter. She said her daughter needed a heart valve replaced and my ears stood up as still as a German Short Hair points. Something inside of me said, Tetralolgy of Fallot when I heard it was the pulmonary valve. Anyway her daughter is 24 and has had multiple open heart surgeries. I listened to her talk about it and then I opened up about Ellie. I mentioned that my daughter was born with a heart defect and then I said, actually two years ago today she was flown by helicopter to Children's. I also said, to her and two other nurses... I would not have said a thing today but with this conversation it was like I was suppose too... it was so weird!

After Ellie  arrived (2 years ago) we spent 3 days waiting for her to get better before surgery, I wrote this on day 2 when I couldn't sleep.

It is 12:33 am and I just got up. I feel like a new Mom of a 9 day old. Cold. Tired. A little out of it. Time to feed baby Ellie. But I can't, instead I have a plastic cone attached to my right breast as it is making a swishing sound collecting milk into a bottle. This wasn't how I was picturing feeding Ellie but I can suck it up and do whatever it takes. She on the other hand has a lot more to complain about. Currently she has 7 bags of fluids hanging behind her, all of which are for something and all of which are being pumped into her little body. She is quiet right now, sleeping the best she can while on a ventilator and sustaining multiple IV lines as well as a central line. Her little nose has a tube in both nostrils. She has while circles attached to her chest. She is monitored by an RN 24/7. This is due to her heart having two abnormalities. One is more common, a VSD. A hole in her heart which is too big to close on her own. And, Coractation of the Aorta which is the narrowing of the aortic artery causing the blood to not leave her heart and go where it needs to go. Currently the team here at Children's has been great at explaining Ellie's diagnosis to us. She is in great hands. One of the drugs she is receiving has re-opened her ductus to allow her to flow blood through her heart like it should. The ductus is a small vessel used only in utero. While in utero blood bypasses the lungs and after birth the ductus closes on its own within 7-10 days. This happened to Ellie like it should. Her ductus closed thus leaving her to use her aorta. However, her aorta was virtually blocked due to the narrowing, so the blood was restricted. This caused Ellie to go from a seemingly healthy baby at day 6 to a very sick baby at day 7. Thankfully I caught onto the fact she wasn't normal and made the right calls otherwise who knows what would have happened. These calls lead us to the urgent care room in Onamia to the ER room to a helicopter to Children's in Minneapolis. Along the way Robert and I have been so grateful to receive such excellent care by staff but also by family and friends. We believe in our hearts Ellie will be just fine and will come out of this stronger than ever. She is a little fighter and has held the attitude since arrival. Emotionally Robert and I are on a roller coaster ride. Up and down but we know that is normal too. It is hardest to be by Ellie and know you can't hold her, know that she knows your there but she can't be consoled. She is comfortable though and isn't being put through a ton of pain. She is on a regular drip of fentanyl to help her relax and cope. And I know that this will be over sooner than later. It is just so true how fast your world can be rocked from right side up to upside down. And how I honestly could have said, "This will never happen to me." I never thought that I would have a baby with a major heart problem or any problem. Of course you worry you will have something happen but often times that is for nothing, so here I am. I am a Mom by my babies bedside armed with Kleenex and a steady stream of tears. Praying so hard that this will pass. That in a month I can have a new normal life back. That I will have Ellie home and nursing like she should. That I will have the spring song shower down upon my family and bless us with its newness and life. That we will in a since get twitterpated  like thumper says in the movie, "Bambi." I know patience will be my biggest obstacle to overcome. It will be what I need to make it though the days ahead. I am so thankful to be blessed with two beautiful daughters. I know that in time they will be able to play together and I will look back at this event as just another step to bring Ellie into our family. So here's to another day of looking forward, staying strong, and maintaining a positive attitude about all of this. And, if every 3 hours I have to nurse a plastic cone I will be happy that I am able to supply my little gal with the healthy food she needs to get bigger and stronger. Sooner than later she will nurse again and I will be once again be tired. Cold. And a little bit out of it.

A couple things from this journal entry stand out...
I was so worried about nursing her... she nursed until 15 months old!
I was so looking forward to her playing with her sister... they play everyday!
I referenced the movie Bambi... Ellie loves movies... loves to watch them!
I talked about her fight... she is a fighter alright. Strong and passionate about what she wants!

Everyday I thank God for giving me the chance to go through this event because without it we wouldn't have Ellie. I love her so much, she is such a blessing and I am so amazed at life's miracles! Ellie's heart is special, but I believe all those that supported us through this event have special hearts too! Something like these leaves a spot on your heart that just doesn't go away!