Well, she's 10 points away from being taken off her ECMO machine. By tomorrow morning the surgeon wants her off. When we got her back on Wednesday from her 10 hour surgery she was at 120 on the ECMO machine, full support is 100. As of this evening she's at 60 and she has to be at 50 to be taken off. Her goal for the night is to get to 50 and tolerate it! She's SO close. She's still having trouble maintaining her blood pressures and having fluid taken off. She's still dangerously puffy and every time fluid is removed it lowers her already low blood pressure. It's such a fine balance. The fluid increases the volume in her heart helping it to pump better so when this fluid is removed her blood pressure lowers. Slowly, slowly it's coming off. She was put on T3, a thyroid hormone her body already produces but this will be an extra boost. The nurse said it's rarely used as it costs thousands for 1 syringe. Only the best for our princess!
Tomorrow she'll have a few procedures done. Hopefully she'll be off the ECMO so the surgeon can work on her. It's important to be off the ECMO because her blood is thinned and any surgical procedure done will make her bleed and with thinned blood ANY bleeding is dangerous. She needs a new ART line, an IV in an artery where blood is drawn and her blood pressure is measured. Her foot is purple and her leg is splotchy because this line is going bad. She'll also get a P.D. cath to help remove fluid. It also acts as dialysis as her kidney function is zero. Last but not least, the surgeon may go into her chest and clean it out and remove some fluid that has built up behind her heart. It all sounds scary to me but I know it's nothing compared to her first surgery.
It's so nice to FINALLY be getting some good news. We've only had bad news since she was born. Prayers and fasting work of that we are convinced. Yesterday she turned a little corner and today she's still improving. Although this is the hardest thing we've ever been given the blessings have been countless. It's amazing to look back over the past 10 months to see how the Lord was preparing us, he truly was!
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18 comments:
Progress is progress and she is slowly making it! We will continue to keep you in our prayers.
Hooray! I'm so glad for some good news! Everyone in our ward is so concerned for you all and we'll keep the prayers coming! Sending our love your way!
Hi Heidi- you don't know me but I went to school with Chris. But more importantly I am also the mom of a 'Heart baby'. My Braden is 6 now and doing amazingly. My friend Heather told me about your sweet baby and I just want you to know I am thinking about you guys. If you ever need to vent to someone- but you feel like no one 'gets it' I am there for you! She is amazing and you will be so glad you have documented as much as you have. Brae loves to look back and tell everyone how he got his 'zipper' scar. I am in several support groups for heart mom's, so if you want more info let me know!
Caryn Rasmussen Beck
becknewsaz.blogspot.com
becknews.com/bradenmedicalupdates.htm
Yea for Jersey!!! We are so excited to hear the good news. We made her the focus of our fast on Sunday. She is strengthening our testimonies before she can even speak! What a girl! She is stronger than her body lets her be. We love you Andersons!
Hi! You also don't know me, but I am also a heart mom and I just wanted to let you know that we will keep Jersey in our prayers.
We love all the extra good news, and Josh was so moved when he got home Sunday night. What a blessing for him to have been a part of that evening. Your family is stengthening other families and you don't even know it.
We will be anxious to hear how today goes and will pray that Jersey can get off the ECMO machine. That will be one big hurdle accomplished. Love you guys.
I am so glad you are getting some good news. She is a fighter!!!
I always get a little anxiety before reading your posts because I'm scared that it's going to be more bad news, but I was so thrilled to see that she's making more progress!! I wrote about little Jersey on my blog, I hope you don't mind. I just can not get her off my mind.
Found your blog. I use to work with Chris at BC. I read all I could on your daughter. You guys are in my thoughts and prayers. Tell Chris "chai"
You were in our prayers on fast Sunday and you are in our prayers every day. Yea for some progress!
Michelle Yost
Oh yeah for Jersey!! So glad to hear some good news. I can't stop thinking about you guys & hoping that Jersey will get stronger each day. Just know that we love you guys & are praying for you.
I like that you still joke (about the thousand dollar T3 hormone injection)even though I'm sure deep down you're not feeling it though. We are praying tons for you guys and sweet Baby Jersey. Thanks for posting and keeping us updated. Everyday I look for an update on your sweet girl.
This is Karen Whipple's daughter in law. I just wanted to let you know your family is in our prayers and we are happy to hear GOOD news about Jersey.
Heidi & Chris, thank you for your strength. You may not realize how big of an impact you have made on many of our lives. I am so sorry for your trials, I wish that Jersey was at home snuggled in your arms healthy as can be, but of course that is not His plan. She is so beautiful.
Please let me know if I can help with the kids.
YAY for good news!!!
Soooo great to hear this! Hope tomorrow's procedures go very well and I'll be standing by! Prayers from us!
What is the latest? BLOGS are the greatest. I love that you guys have been so good to keep us informed and shared your feelings. I think everyone feels more connected to Jersery and your family because of it. Thanks and we love you guys and the prayers wont stop:-)
Hi! I don't know you, but I found your site from Emily Webb. I understand greatly what you are going through.. especially all the medical terms..still fresh in my mind. My daughter was born with Leukemia and had a bone marrow transplant..her first year was spent in the hospital. She was @ Banner Dessert, UMC in Tuscon and Phoenix Childrens. It's wonderful you are documenting everything..as I have as well. A dear friend of mine I met in the hospital..son was on ECMO..so I do know quite a bit about it. If you'd like.. my blog is private, but send me an email dreadog7@gmail.com (my daughter has also had heart issues..from treatments, etc.) What hospital is she at? She looks like a princess, that's for sure.
Andrea Morrow
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