the dance of life..
A few steps forward, a few step backwards…that’s how it often feels so far on this journey. Just as things feel like they are going well and progressing it feels like we hit another setback and step back. But what if that’s not the case..what if it’s not a forward backward straightline…but it’s an all around the room dance. Where both backward and forward steps are required to make the dance so beautiful?
I was thinking about this as Rory got her NG tube back this week (feeding tube that goes through her nose). I remember how excited we were when she was able to get rid of her feeding tube in the NICU, and now we have it again. Rory is still nursing during the day but it was decided to place an NG and do a continuous feed overnight to help with her weight gain. It’s just been slow and she needs the boost. At first it felt like a step back to me – but really I realized it’s what is best for her. To give her more food for more growth. These first few years of development are so important and we want to do all we can to give her every chance to succeed and be her best self. So the more nutrients for the more growth the better. Even if it means an uncomfortable tube (that stretches mom beyond her comfortability with managing at home…..for someone who used to not be able to look at needles when I had blood drawn..I’ve come a long way 😊)
It was hard, she is still getting used to it, I imagine it’s uncomfortable having a tube go in your nose, down your throat and to your stomach, but it seems to be working…she gained over 1 ¾ ounces a day this past week now weighing 9 ½ pounds. And now that shes getting used to it (and that we got some antacids for her reflux too…) she seems to be doing better. Feeding during the day is still sometimes a challenge, and we still can’t get the girl to take a bottle….but we will keep trying and if she never does take a bottle that’s ok! What matters is that she grows and gets what she needs nutritionally!
Rory also was able to go back on the antivirals – so hoping that continues to fight the virus (her viral load was up last check since she’s been off the medication for a month while we waited on her WBC).
Andrew and I also started back working this week. I am grateful to be able to work from home! We are getting used to it, but I think it’s going to work. Grateful for our amazing family (espeically Cici) – helping to take care of Jedidiah – as we plan to keep him out of daycare until Rorys immune system is stronger and the spread of COVID cases are not so high. Rory in the meantime is my favorite co-worker these days…though she sure sleeps on the job a lot ;) (which is a blessing )
Our prayer list for this week…
For White Blood Cells to continue to stay up now that we are back on the antivirals
For all things NG tube – that it stays in place (no dislodgement…and that mom stops worry and fearing over dislodgement or other things going wrong without us realizing it), and that Rory gets used to it and that it doesn’t cause her discomfort.
For sleep at night – Rorys sleep hasn’t been as good since the NG but getting better
For feeding to improve – Rory tends to run out of energy towards the end of the day and get overstimulated and not eat as well….we also are still praying for her to be able to take a bottle. As it turns out she’s lip tied and may have a tongue tie working agianst her (like her brother was) so talking to specialist to see if we should fix that (if it’d help remove some barriers with her bottle taking challenges or just disrupt nursing more…)
Prayers for continued development and growth within her brain and head…praying for miracles as she develops and all things brain plactisity for her! For doctors to look back and be amazed at a miracle only God and not science can explain!
Above all I pray for God to take away any pain and discomfort from her and to give her peace and joy and comfort and a good life.
Ending with an excerpt from a Bob Goff devotional that encouraged me…
“Sure, there’s a lot to be concerned about, but we have even more reasons to be hopeful. Here’s why: Jesus said His kingdom wasn’t of this world. He said evil would win for a while, but that His kingdom of love would have the last word. And He said those of us who follow Him will be the ones who are laying the groundwork for His return. We’ll be the runners who sprint ahead with the good news of what’s coming. Don’t believe the people who tell you there’s no hope. It’s everywhere. It’s like the smell in the air right before the rains come. We have hope because we trust in the God who sits above every conflict. We bring hope when we choose to fix our eyes on Jesus rather than on all the distractions around us. Next time you hear bad news, ask yourself how you can be hope in the midst of it.” – Bob Goff …live in grace, walk in love devotional in the Bible app
