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On May 4, 2009, Josh and I discovered that our soon to be little girl, due on August 25th, would be born with a CHD known as HLHS (hypo-plastic left heart syndrome). Upon hearing "something is wrong with your baby's heart" our lives changed completely. Our little Ruth Elizabeth was brought into this world on August 18, 2009. She was delivered via c-section and rushed immediately from Barnes to Childrens' Hospital for a cardiac cath intervention. Her arial septum was reopened and a week later, Ruthie underwent her first open heart surgery, the Norwood. Unfortunately, Ruthie was not able to survive on her Norwood heart and the Glenn procedure would not work for her. Ruthie was placed on the heart transplant list Feb.3, 2010. After waiting in SLCH, Ruthie received a new heart on July 5, 2010. We are so humbly blessed to receive this gift of life. We now are on the road to recovery. We have had our ups and downs. We have become SLCH regulars due to countless hospital stays and ER visits. We are learning how to manage life outside of SLCH and with another little girl. Now that we have two children, we are learning the about being a heart FAMILY.

Tuesday, December 29, 2009

Another Reminder

Being a mom has it's ups and downs, as any mother knows. Some days you are full of energy and you feel like superwoman. Other days, you are there, just trying to get by. Yesterday was a good day when it comes to being a mom. However, when it comes to being a heart mom, yesterday was not a good day.
With every doctor's visit I am reminded that my life is not normal and I am starting to get use to the non-normal life. I am not getting use to the heart ache though. It hurts to think that your little one will have to go through so much. It hurts knowing that you can not fix this problem for your child. It hurts to think about the future because you are not sure what it will bring. Will I get to see my little girl grow up and go to school? Will she be able to get through a good portion of her life without a transplant? I am afraid to plan for the future. Afraid that Ruth may not make it that far so planning anything nervous. But how can I go through life not making plans? I can not keep avoiding the future, but how do I plan with a heavy heart?

It is exhausting! Waking up every 3-4 hours to feed a hungry baby. Checking medications. Planning doctor visits and hospitalization. And then being expected to keep it all together during the holidays and during family visits. What a crazy life! Living life as a heart mother is much harder than I could ever expect. Is the care of Ruthie hard? No. I enjoy taking care of her. However, the trade off of no sleep, no energy, no baby sitters (because honestly I don't feel comfortable with others watching her--- not because I dont trust them, but because she is a special baby and I dont want to make people feel uncomfortable) and no quiet time is a bit rough. It is a roller-coaster that I can't get off, but I wouldn't get off even if I had the chance.


I know that complaining does not get you anywhere, but some days venting is enough to pick me off the floor and to move on.
I do love my family. I love my life. I will march on.

2 comments:

  1. Laura,

    You are an amazing mom. You have so much strength and are doing a great job with Ruth. I know how hard it is to be a first time mom and can't imagine how hard it is for you to go through all of that and have to also have the extra stress of HLHS and everything that goes along with it. You inspire me everyday and give me hope that we also can get our little boy through this illness. Lean on others once in a while and try to get some sleep. Even if its just a few hours. Take naps if Ruthie does! Hang in there, this has to be the roughest time. I can't wait until all of Jacob's surgeries are behind us and maybe then we can breath again.

    Your are doing an amazing job, feel free to vent to me anytime! You need to take care of yourself too!

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  2. Being a heart mom isn't easy...but like you, I wouldn't get off the roller coaster if I had a chance, even if they pushed me! :)

    I also understand the fear of planning the future. It's a scary, scary thing and no parent should have to feel that way, but unfortunately, it's reality for many of us. When I start having those fear-of-the-future feelings, the only thing that helps me is praying for God to take those negative feelings and thoughts away.

    I hope you're able to get some rest and some quiet time soon. Hopefully that cutie will start sleeping a little longer at night before too much longer. It's AMAZING how much more human you feel after 6 hours of straight sleep instead of 3, lol!

    We're always praying for your family!!

    Big heart hugs and prayers,
    Shannon

    PS...vent ANYTIME! :) It's great therapy! :)

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