A Bundle of Myrrh

October 17: So we didn’t bust out of this place over the weekend. All we’re doing now is hanging out and drinking really bad coffee.

We’re looking at the possibility of going home tomorrow but…I know how this game works now. She’s cleared to go by everyone but the final hook we’re hung up on is Rose’s bladder function and how often she needs cathing. Every 12 hours seems to be too long so we’re going back to 8 hour intervals. The urologist will look at her volumes and decide what plan works best and if we can leave with that plan Monday. Ugh a lug. Praying for patience!

October 15: Rosie update. We’re still in the NICU. Today Rose got a real bath. I think she might have enjoyed it had she not been starving at the time poor thing. 😅

Yesterday we were taught how to use a catheter to empty her bladder. We’re not sure if this is something we’ll have to continue doing long-term or if it’s temporary. Until evaluation or better testing can be done by a urologist we won’t have a clear answer. We hope to meet with that doctor next week.

October 12: This morning we were able to meet with a Physical Therapist who evaluated Rose and then dumped an overwhelming amount of wonderful information on us. Rose has very good movement in her hips and even though we were told before she was born that she had little to no movement in her knees, she does. This is all great news. Her calves, feet and ankles are a different story but we are not without hope that with a lot of care and hard work the damage to these areas can be addressed and hopefully improved enough to give her more mobility options. We’ll learn more in the weeks and months to come. For now we have a great plan for some simple PT we can start right away and continue once we get home.  

Rose did great. The surgery to put in a shunt to relieve pressure in her head was successful. We are thankful that we have received great care and the Lord’s continued protection.

She was a bit fussy post-surgery, but able to take her bottle normally and avoid complications. Thanks be to God.