Jen took Zoe in because of a long fussy period. The doctor found very little wrong with her and wonders if she has acid reflux: it would help explain a lot of the symptoms.
The doctor also wondered what our goals were.
What are our goals? Our goals? Our goal is to be as good parents as we can for day 119. And hope we get to be parents for day 120. And if we have to do something to help Zoe get to day 120, we figure we should look into it.
We're not talking about life support. But to this point, medicine has offered to not turn on her jaundice lamps; to let us feed her only what she wants to eat (We found out today she's eating too little, that she needs more calories. We felt slightly bad, but then again, Jen and I have been essentially dropped off at the edge of the woods with a newborn and told to come back when she's dead.), and they've offered to give her morphine when she needed a burp.
The doctor went into a discourse about how even if Zoe does make it through heart surgery, her quality of life something something our quality of life something something something else.
Here's a hint for everyone, especially doctors: don't talk to us about quality of life. Please don't use those words. I think it's how I ended up being with two of my daughters only two nights a week. I think it's how parents are convinced to "take care" of a pregnancy. My quality of life is probably less than Ted's, who, I'm pretty sure, is less Dan's but more than Tim Kubina's. And everyone's quality of life is less than...say...Madonna's kids.
Zoe is alive. We can't afford basic cable or air conditioning, but I think she's ok with her quality of life. What do you think?
10 From birth I was cast upon you;
from my mother's womb you have been my God.
Psalm 22:10
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She is such a little miracle. It enrages me that they talk about "quality of life" and then won't help her live a better life. Maybe they're mad because she proves them wrong every breath she takes! LOL She's amazing and she's your child. What do they expect you to do, throw her to the wolves? Stupid medical people, (HA! Coming from a nurse!) Anyways, I enjoy the blog and reading about Zoe. God bless,
ReplyDeleteAshley
I think Zoe is proving she wants to be with her family and stay with them as long as possible! That little lady has a lot of determination and so many in her corner praying for her. You show them all,Zoe!~
ReplyDeleteBeing the mom to Annabel, T18, I have come to detest the terms, "quality of life", "Lethal diagnosis", and "Incompatible with Life"! She is now 3 and they still continue to use it. Just keep on doing as you are. You are awesome parents and your love and care are obviously first and foremost for Zoe! Cathy & Annabel
ReplyDeleteI agree with Cathy, mum of beautiful Annabel and all of the above comments, these babies/children are re writing these terms......Maybe the Dr could re word theses terms to....
ReplyDelete"Quality of life" = " So your baby is up against the odd but babies who are, are probably the most cared for, prayed for, cuddled, kissed, loved and adored babies around! And they must love it because they fight their hardest to stick around for another day of that loving!!"
"Lethal diagnosis" (I will just point out that we are all born with a lethal diagnosis!!!) = "As we don’t full understand this condition and it’s a bit unpredictable how long all our lives will be, your baby may make it to term, live for an hour, month, day, year, decade or century, who knows? these babies defeat all sorts of odds, lets help them live their life to the fullest”
“Incompatible with life” = “wow this baby is beating the odds to be here today, how amazing is that!”
You guys are all the experts about your own babies and what is best for them! you are the ones who live, sleep(or not sleep) and breath these conditions! Follow your gut instincts they have been working now for 119 days!
~ Barb, Melb. Australia :0)
Greg and Jen, isn't God Zoe's chief physician, the Holy Spirit in her every breath, and Jesus her life ("I am the way, the truth, and the life...")? Zoe's (and our) life and living cannot be explained or defined in medical terms. Sure, there are medical ways to help her with various symptoms of T-18, but even these are gifts of knowledge and technology from God. It's so frustrating to be confined to our own intelligence when God's wisdom and ways have no limits.
ReplyDeleteI continue to pray for you all, that your waking hours are inspired with joy and endurance and your resting hours are filled with...rest.
oxox,
Renee
Hello,
ReplyDeleteYou don't know me, but I also live in SE Wisconsin, and have been following your blog. I just want to offer my support and prayers. There are many of us out here cheering for you and Zoe.
Suzanne