Holiday Cheers and Pulled Tubes

This past Saturday night I took the opportunity to visit my Levin cousins at an Open House my cousin Allan was hosting. It had been a long time since I saw them and I looked forward to catching up with various members of my family. While I was showing my aunt the latest picture my husband sent to me of Isabelle, I realized something was missing. “Oh my God, she pulled the tube! I got to go-nice seeing you-I’ll call you later- thank you!” Dashing out of the house with coat in hand I hopped into the car and sped back to Plymouth. We made a decision when I got home to wait until the morning to have the tube put back in. She ended up taking 95 ccs in the bottle that night, which was the only bottle feed she finished.
Sunday morning I wanted to keep her home. I did not want to get in the car and make that trip to Children’s. Why can’t she have one day without being poked and prodded? After the next feed was a failure my patient, loving husband said “We need to take her in.”
He dropped us off at the entrance of the ER, we went in and were greeted by a cheery male nurse who distracted Isabelle while taking her vitals. After a few jokes about her love/hate relationship with the tube, another one was dropped and we gave her 100 ccs through the bag. Her sats were dipping into the low 70’s and even 60’s as we waited for her feed to go through. We both knew things weren’t looking good as she threw up on my shoulder and her sats continued to hover around 68-72. As the feed went on the numbers started to come back up. Relieved, we both started to plan attending Adeline’s Day Care christmas party which was at 4. Feed was done. Time to change the diaper. What the heck is that??
We made a plan for Worst-Case-Scenerio: one of us will drive back to Plymouth and be with Addie for her party and then come back with necessary items to stay at the hospital with. Got it. I would be the one to go to the party and enjoyed seeing Addie twirl around to “Dance of the SugarPlum Faeries”. Brought back food for my husband but forgot his work computer in the chaos of Packing for the Hospital While Trying to get a Two Year Old to Not Eat Candy.
He stayed that night, me the following night. She had nothing by mouth and an echo along with an upper GI was requested. Let’s just say the GI was a tough experience and I am glad we won’t have to have one of those for a while. Good news- nothing out of the ordinary, echo shows no change in her heart. Awesome! We can try to feed her now!
The Gi team came by to discuss feeding tube options. Mickey button or PEG? Hmmmm…PEG it is.
But wait- did she just suck down 30 ccs in a matter of 90 seconds? And another? Then another? Next feed not as much but more than she normally takes at that time? Same with the next feed? In the morning she has a repeat performance of taking in another full bottle, baffling the minds of the Great Dr. Emani, Dr. Jenkins, Dr. Lightdale and Dr. Levine. What to do? Wait. Wait until Friday to make a decision about placing the tube. Perhaps she is finally grasping that if she sucks on the bottle she will get full. Monumental.
To some of you, this isn’t a big deal at all but to us- it’s a freaking miracle. If you have seen me holding her under the fan light in the kitchen, hoping she will be distracted by the fan so I could get one more cc into her, then you would know how huge this is for us. Or watched us try bottle after bottle- Nuks, Dr. Browns, Gerber with Nuk nipples….preemie nipples….Medela nipples, then you know how big this is for us.
She is drinking. FInally on her own, sucking bottles. After we were told she would never learn how. Boo-Yah.
So Isabelle and I are spending Christmas together at Children’s. At least, that is what it looks like right now and that’s okay. I am thrilled we are given the opportunity to let her show us what she can do. I am grateful the doctors listen to us. I am even more grateful for our family being able to be in two places at once. I’m not terribly sad about christmas because in all honesty it is relatively new that we celebrate it like we do. In years past Liz and I would get Chinese food and hang out. I’m sad that Chris won’t get the Christmas he enjoys with all of us together. I enjoy it because he loves it so much and I am disappointed it can’t be the way we have done it in the past. The good news is these small sacrifices are for a greater good, for our future together as a family. I think the bigger gift is watching Isabelle do something we didn’t think she would. I think he knows this too.

2 thoughts on “Holiday Cheers and Pulled Tubes

  1. Her drinking from the bottles is a Christmas/Chanukkah miracle. Just hearing the news made me want to dance around the house. The warrior is back!! Love to all and prayers that she continues on this course. <3💞

  2. It sounds like things are looking up! Hoping to get down there after the holidays for a visit and help out if I can when she has her next procedure. Miss and love you! Give Izzy a kiss and hug for me!

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