20th day

Keep catching myself stressing out over what the next few months look like. This morning I was reminded that there isn’t a need to worry. Got into the hospital right as rounds started and got to hear all the behind the scene stuff. After that the medabolic team popped in. They can’t believe how amazing Ryman is doing. Levels have stayed under 50 all week and she is taking bottles like a champ. Because she ate through a feeding tube for the first 16 days they worried that she might have to get a G tube due to oral stimulation issues. Both of those are HUGE wins. Rumors that we might move to the 7th floor before then end of the week. These rooms aren’t in the NICU and will be safer for her to not catch any other bug. Plus they have couches!!

Middle of last week they talked about us transferring to out patient. This is really scary to use and brings a whole set of problems along with it. All we could do was pray that when we got to that point that God would have continued to have doors open and needs met. This morning during rounds our metabolic doctor brought up the option of taking her home till she’s big enough for the transplant. LIKE HOME HOME for the next 2 months. We could do all the test at Vandy in Nashville until she’s 6 kilos (12-18 pounds). That’s how good she’s doing. Yes this will bring other challenges and we will have to come back up to DC for a few months around transplant time but it shows how comfortable the doctors are with her progress.

Still have at least a week worth of testing up here for liver transplant stuff. As long as she stays on this pace we should see the Tennessee state line soon.

-Jeremy

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15 thoughts on “20th day

  1. Amazing news Brandy. So excited for you guys! Love your regular updates. You’re doing such a great job keeping us all informed and I love the specifics of how we can pray for your family. Love you guys bunches!

  2. Thank you Jesus!!!! Auntie wants to see that sweet face & have her only a drive away. Still praying for complete healing—-
    Chase will want to know ” now can I met her?”

  3. Amazing Update! Baby Girl, you keep up the good work, lol. Thank you God for such a blessing, we continue to pray that Ryman will thrive and get stronger each day.
    Mommy and Daddy, one day at a time 🙂 Easier said than done, I know. Lean on God, hold each other up and know that your family and friends are here for you both!
    Love and Prayers from Ky

  4. Praise God!!!! So may prayers going up for your Little Ryman!! Thanks for letting us walk this journey with you!!!

  5. I knew God would come through with all the prayers for Ryman, we can’t wait to see her and you both. We love you, prayers are with you. love mamaw and papa.

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