Somebody's Listening....

Someone must have heard our prayers last night...

Yesterday was not good. Little Bird hasn't struggled this much since her first few days. She underwent a third transfusion because her platelets bottomed out. Even though I know this is a common therapy for babies born this early, it doesn't make it any more comforting to know she's being put thru it. 

When she was three days old, and after the removal of her umbilical line, her team determined that she needed a PICC line to administer long term fluids and medications. On day twelve, it was removed. They didn't anticipate that she'd need it any longer. Yesterday, and because she's dealing with so much right now, they decided to reintroduce it. It's a three hour long surgical procedure that involves, in her case, inserting a string-like catheter in the top of her foot which extends up into her heart. Manipulating this in place properly doesn't tickle, and the technique doesn't guarantee that they will be successful. This time, it wasn't. So they scheduled a second try for today. I couldn't sleep last night over all of this. Little Bird is weak. She hasn't eaten in days, and she does not have the energy right now to withstand a whole lot being done to her. I spent hours arguing our case to God, begging him to give her a little break. Just one day. Let her rest. Apparently, he heard me. 

This morning, they decided to wait. They'll make another attempt tomorrow afternoon, giving her today to be free of needles and tests and procedures. Thank God for that, because she really, really needs a break right now. 

Her last belly scan showed that the antibiotics are working against the NEC. But it won't be until this time next week when she can restart her feeds. And that's if we don't run into any more issues. Her vent pressure settings and oxygen were both increased again today. Her lungs are inflamed and have begun to show signs of scar tissue from prolonged time on the machine. She isn't even trying to fight it now, and I feel this when I place my hand on her back. Her monitor violations have also increased over the last six days. They sedated her in order to try and place the PICC line, but she didn't want to wake up afterward. They spent a good while trying to stimulate her, but she just shrugged them off. She doesn't want them touching her right now. She's trying to tell them to back off, but she can't say it. They need to pay attention.

The oldest four kids return to school on Monday, and the conflicts over how we are going to be able to split our time between here and the NICU have already started. The possibility of lodging an hour and a half away from home each weekend is one of several being discussed. Unless you've lived it, it really is impossible to understand how stressful something like this is upon the rest of the family. This obviously isn't normal for us. For the kids. They're used to knowing that when they go to bed at night, their parents are going to be here. They're used to dinner every day at six o' clock, together, at the kitchen table. Not microwaved pizza in front of the computer. Not mom and dad walking thru that door at midnight. Every minute of routines that they've known from the time they were born has been completely disrupted. For the past six weeks, they haven't had any sense of stability. Everything has been from one minute to the next, and we can't continue on like this. There has to be a balance. We just haven't found that yet. 



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