Dr. Musa just had a very good conversation with us about Zoe. She said there IS infection in Zoe's trachea that will be treated with antibiotics.
Dr. Musa said that they will move slower because removing her from the tube was tenuous before. That might be because of infection, or her breathing, or both.
We wanted to establish that Zoe didn't have feeding problems before, and pretty limited breathing issues. We keep hearing people saying that Zoe had those issues as persistent or pre-surgery.
Dr. Musa said that while Zoe ate before, she didn't eat enough, evidenced by her small size. Given her size and age, she would be classified as someone who isn't eating well.
It's a good point, but it means that ignorance is our fault. We should have known our physician was giving us bad advice and disobeyed it with the correct tactic - feeding her more calories and more food (directly the opposite of what our pediatrician had advised).
Dr. Musa's point - and I have deep respect for anyone speaking intelligently from their heart - is that a new baseline has been established. Zoe, with a functional heart, with an intubation tube, post-surgery. None of those things have happened before.
And the new baseline might not include bottle feeding. Or breathing without assistance like before. We'll have to find out.
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The new baseline sounds good to me. I know God will bring about all else that is to follow. (Including her getting more calories and food). She is still here and post surgery. Since Zoe didn't come with an instruction manual, I think you guys have done spectacular. Give yourselves a hug for me. You have earned it with your unconditional love for her. Praying.
ReplyDeleteLaurie in Ca.
I don't know if this will help any...
ReplyDeleteWhen our daughter had unrepaired Tetrology, we fed her more. But she just spit it up. We didn't know about the ToF for her first three weeks. The BT shunt wasn't put in until she was 40 days old. And in all that time, she was breastfed. And she just kept throwing up and throwing up and throwing up. The doctors pointed out later that she just simply didn't have the ox-sats to spend much energy digesting. All her efforts were going into keeping her brain and her heart going. Digesting and growing was just more than her little body could manage.
So maybe Dr Musa is right; maybe Zoe should be categorized as a baby who wasn't eating properly before. But having been there, where you're thinking you should've been for those 8 months, pushing the calories, feeding more, I'm gonna tell you that it may not have worked. I don't think your pediatrician was necessarily giving you bad information, or that you could've done better for Zoe.
Yes, things will be different now that she has her shunt, now that she's pink-pink-beautiful-pink. But you have something huge going for you, in that she knew how to eat, she was accustomed to sucking and swallowing and having food in her mouth. As I've spent time on email lists for kids with VCFS (which is what caused my daughter's Tetralogy), I have been astounded by the eating problems and the g-tubes. And let me tell ya, many many of them were a result of starting the kid off with a feeding tube because of desperate need. But Zoe HAS eaten. She has grown up so far with eating being a normal thing. She isn't going to be opposed to it and hate it and be all grossed out by having a nipple in her mouth to suck on. And that is a humongous hurdle that she overcame long ago.
And I know how incredibly frustrating it is for you to have to keep telling the doctors and nurses the same long long story over and over and over again. But keep at it! All they know is what they read in the chart, or the 3-minute briefing they get at shift-change from the nurse who's going home. All these things that are SO obvious to Mommy and Daddy are non-existent to the nurses. They don't know her history. I am sometimes stunned by the assumptions that doctors make (like Zoe having long-term problems with eating), but they won't know any better unless you and Jen just keep pounding away at straightening them out with the facts. It is exhausting! But it makes a difference in how appropriate the treatment is for your baby. And... eventually... the nurses will get the idea that you are interested in your child and there to be an advocate, and they might even start checking with you to make sure that they've got the story straight about her background, or what to expect from her temperament, or how she's reacted to previous treatments. Hang in there, hard though it be!
I wish you had a "fake" yahoo account listed here for emails, because my comment ended up being too long.
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