Thursday, April 30, 2009

One step forward and two steps back

Well, today on the way to the hospital I got a phone call from the cardiologist. He called to let us know that Grace's oxygen saturation levels had been jumping up and down all morning and that the pressure in the right ventricle has been very high (both not good news). He was letting us know that he was going to give her medication to help relax the heart, so that hopefully the right ventricle will function better. The PDA had still not closed, an in fact had gotten larger now due to the high pressure in the right ventricle. Grace will in fact not be coming home this weekend, and the surgery for a shunt in the heart is now back on the table after her reaction today:( She was doing so well, we really did not expect this turn.

When we got to the hospital, Grace was back on oxygen with a nasal canula. She had been turning blue in the AM due to her low levels of oxygen in her blood. We were able to feed Grace, and she is doing great with that, but her poor little heart just isn't doing what she needs it to. Her oxygen saturation levels were all over the place while we were there and the nurse called the Dr. to see how high she can turn the oxygen levels up to, which makes me wonder if she may need to be intibated again if she continues to be all over the place with her oxygen. I did not have the heart to ask this question today, because I did not want to be told that this is a possibility. If she needs surgery, I know everything will be back again, but I also realize that if that is what she needs then that is what we have to do.

It was so hard leaving her today. Her little eyes just make me want to stay with her all day. All in all I am not doing so well with her step back todays. I really just want her to be ok and to take her home. I hate having to leave her everyday, although I know Gavin needs us too. I am hoping that the hospital does not call tonight....no calls always mean that she is ok, so phone calls are never good news.

7 comments:

  1. Alexis, I am so sad to hear this news. We were just talking today about how good the news has been and how excited we are for you all. I just want to cry with this news. I am saying lots of extra prayers for you, Keith, and Baby Grace. She is a fighter. I pray that there are no calls from the hospital tonight as well! PLEASE call if you want to talk...I will listen and won't say anything if that is what you want or need.

    I am sure you are so pulled between Gavin needing you and wanting to be with Grace as well. I am thinking of you all!

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  2. We are all keeping Grace as well as you, Keith, and Gavin in our prayers. Disappointing news today...but our Grace is a strong little gal!

    We love you all!

    Laura & Gary--Nick & Ben XXXXX

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  3. Thanks Kerry, I am just in such a slump today between the hormones and the set back...it has just been a day of tears. Not much for talking today, but thank you so much for all of your comments, they really do help:) I hope your doing ok too.

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  4. What a rollercoaster ride. My heart goes out to you all. My prayers are with Baby Grace that she will stronger very soon.

    Love,
    Judie

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  5. Alexis - I have been following this since day 1, I just don't know how to become a follower on this site...please know I am here for you and whatever you need...I am here to listen, talk or just 'be'...Please let me know if there is anything I can do to help you out! I pray for all of you and for baby Grace...

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  6. Alexis- you are so brave. I can't imagine going through this as a mom. It's okay to cry, to be sad, and to be mad. She is in good hands at the hospital, even though I'm sure you want her home. One day at a time!

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  7. Please call me, I hope you are doing ok! I am here for you!

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