Still on Target

I typed this post yesterday but I guess it didn't go up correctly.

Remember the guy at the end of the first Star Wars movie that just keeps saying "Stay on target" to Luke Skywalker? That's how I feel today. There's not much going on except monitoring her feeding, breathing, and getting us ready to go home. Medical supplies should be delivered to the house today and Kirsten is picking up all of her medical supplies. Our neighbor and friend Julia is going to the hospital with Kirsten. Julia is a former ICU nurse and has graciously offered to be on call in case we need any help-- the only downside to bringing Madeleine home on a holiday weekend is the lack of home nursing for support. (Our other neighborhood nurse friend Becky is out of town this week as she was married this past weekend to some guy named Steve.)



In any case, we're meeting with Madeleine's pediatrician on Thursday for the first time and we'll discuss the following issues:



1) How long should we expect Madeleine to need oxygen/breathing support? We know its unlikely we'll get a concrete answer but it always helps to have a target date.



2) Feeding plan: We'll discuss how we should approach daytime and nighttime feeds with Madeleine.



3) Plan for stoma/reattachment surgery: The target weight is 5 kilos (about 12 lbs). We want to establishe target weight gain goals so that we can track Madeleine's progress.



4) Medicines: Madeleine is coming home on Prevasid (for reflux), Laseks replacement (diuretic-- can't remember the specific name), and two different nebulizers for breathing support. We want to determine how long they want Madeleine to continue taking this medicine.



That's pretty much it. As you can probably tell, we're extremely excited about the chance to bring Madeleine home. We know there will be many difficult days/hours in the coming weeks but we're definitely looking forward to being Madeleine's primary care givers-- its the piece of parenting that we've been missing. We know that we have one more surgery/stay in the hospital ahead of us but when we compare that with what we've been through, we're hopeful that's just one small bump in an increasingly smoother ride.



Thanks again for everyone's support. Its going to be an exciting day tomorrow.



Brent and Kirsten