Tuesday, January 26, 2010 10:36 PM, EST
DAY 27
"Let the world be filled with grace and let life and love fill your little Grace and help her grow stronger with each breath G-d breathes into her." Lindsay Lombardi from our choir sent this blessing for Grace.
She needs all these: strength, breath, life and love. After a few more turns on the roller coaster, we are finding equilibrium again. I update once a day to spare you some of the ups and downs from hour to hour for I can't imagine willingly participati
ng in these when you don't have to. MG had another episode at 2PM yesterday. She immediately turned purple. But this time the chief neonatologist was there. She determined MG was not intubated. Somehow she had dislodged her own tube. So she was again reintubated. All this took only a minute or two. Her heartrate did not have a chance to drop. Because of this occurance, the neonatologist believes MG's previous episode was also due to the tube coming out and not necessarily her brain forgetting to breath or her lungs abruptly stopping. We may be able to get back our progress sooner than we thought. This is good news. So they restarted her feeds this morning and are weaning her off the ventilator very very slowly again. The episodes did show us how dependent she is on the vent though, even for a second, so we have a long way to go still. The doctor wants her ventilator settings to be better so she can withstand a surgery to close the PDA. The PDA has made no progress in 2 weeks. We had hoped it would close more on its own. The doctor believes she will do better with it closed and get off the ventilator sooner. We are not sure about this procedure and whether it's assumed benefits outweigh the potential drawbacks. The doctor is proposing the procedure for sometime next week. This requires transfer uptown to Columbia-Presbyterian; the transfer can be difficult on their little bodies too (As driving in NYC is on all of us). MG received a new PICC line to get her IV fluids today; they put this in her scalp. She tolerated that very well which suggests she may handle the PDA surgery okay. The concern is that they don't want her oxygen levels to decrease during the surgery so they want her to be less dependent on the vent in order to do it. That's a scary scenario, but she seems to indicate that she would do well despite the fact that her ventilator settings are higher than they'd like for such a procedure. We are still hoping she grows stronger and yes, we still pray the PDA will close on its own as it is supposed to, even though this week's doctor doesn't believe so.
She is alert. Her color is good. Her strength is good. She is growing a little every 2 days. She is over 1100 grams now. While the two episodes were really scary and possibly due to apnea, there is reassurance in the theory that they happened because she was strong and alert enough to dislodge her tube causing this mechanical mishap, rather than physiological danger.
I feel better again today and I turn my lingering worries over to God.
Peace,
Beth
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