There are several times I sit down to write about how things are going and then in an instant circumstances change. Wrenn had a good week after the doctors reintubated her (they inserted a larger tube to help distribute the N20 and Oxygen) and then yesterday and today she struggled to meet oxygenation at 100% support. They had to increase her sedation because she was awake too much and working against the vent, which helps her to breathe. As I’ve said before, every day here in the NICU is a roller coaster. Wrenn's lung disease can show a great x-ray (nice and clear) in the morning and then the next day, it’s all hazy again.
The last few days she’s really enjoyed sucking on her binky and this morning got a massage with pretty smelling lotion. She did well and it made me smile knowing she can also have GOOD moments.
Getting to hold Wrenn is wonderful. It doesn’t last but an hour or two on the good days and the bad days I can only hold her hand or cup her feet, just little ways to let her know I’m there. Surfactant babies are moody and so sometimes noises, voices, patting and bright lights can alter her oxygenation.
I often visualize my daughter’s face without oxygen tubes or layers of tape. I long to hear her cry and look forward to her first coo. I picture us cuddling on the couch while Tanner plays with her little feet. I so want the normal surrounding without nurses and doctors hovering over her shoulder. So many little things to look forward to and yet they all seem so many years away. These are the special thoughts that get me through each day.
Life at the Ronald McDonald House has been good for Tanner. Every couple of days he gets mail from the volunteers; teddy bears and beanie babies. He puts them all in bed with Buzz. At the hospital he likes playing with the other siblings at daycare. I caught him holding hands with one girl named Trinity. He seems to like older women! He is Mr. Popular with the daycare volunteers and they look forward to seeing his bright smile. We try and limit his time there so we have family time too. Splitting hours between the two kids has kept my spirits up and gives us a little bit of normalcy.
From what I understand, there is little demand for infant lungs and so we are literally waiting for the phone call from a matching donor. Each day I pray that Wrenn remains stable. The nurses continue to do a great job keeping her comfortable. So far Wrenn is holding her own and I know all of your prayers and good thoughts are part of her stability! Xoxo!
Here is a photo of our temporary home:
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We do get to have some fun, thanks to donors to the Ronald MacDonald House. They sent us to a Cardinals game. Here is Tanner in full-on Cards fan mode:
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This is one of our best friends.
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