Wednesday, April 21, 2010

Eternally Grateful, and Going HOME!!!

Mallorie's been doing great.  She's been doing so well, and I've been in a private room, with a huge pull-out couch, and awesome people here who are always trying to figure out what they can do to help me, so I should have been able to update more lately ... but the closer I get to home, the more the lack of sleep the past couple of months feels like it's catching up with me.  You should see me; I'm doing what they tell new parents:  the baby naps, you nap.  I hope to SLEEP tomorrow, while everyone else keeps an eye on Mal.

We tried out the new home CPAP machine last night.  It's so QUIET.  We won't even be able to use it to replace the white noise machine!

So we're waiting on John to come get us from Beaumont (~ 2 hrs away), and we are so ready. 

But not without a huge thank you to all of those who "carried" Mallorie (and me) during this stay.  Unfortunately, I can't even list all the names of those who have touched our lives, and given such great care to Mallorie.  Some, like Dr. Bill (who never spoke the words, "I told you so," over the surgery which he had recommended/urged even way back when), and nurse C (who brought me food and cocoa mix and STRAWBERRIES), are old friends.  Most were new. 

This picture is of the most recent group of those who spent hours observing seizures or sometimes what I thought were seizures, waiting to see how she did with extubation, calculating fluid needs :), listening, listening, listening.  I am so grateful; I hope they realize just how much.

And an extra thanks to Dr. M, who totally surprised me and made me step up to the plate, by ordering Mallorie a pureed diet from the kitchen!!  Before this stay, I'd never moved much past jarred baby foods, but when pureed broiled chicken arrived yesterday, plus a side of nice fatty gravy, and when the dietician early this morning included olive oil among her suggestions for increasing calories in Mallorie's feedings, I was able to dump the chicken AND the gravy into a few bottles with some fruits and vegetables (and even snuck in our old Baby Calm, for vitamin C), and felt such a sense of accomplishment, because we're going home, and Mallorie is going to be fine.  Dr. M already gave me her wise advice about not going crazy (told you she sounds like Dr. B from home), and a good part of Mal's daily intake will still be breastmilk, but we are so much further along today than we were in February, when Mallorie turned 3. 

I have also learned that I completely interpret information from the standpoint of my own beliefs, and that I need to be more open to just listening.  I've learned a lot more this time just by listening to the ideas of those who came to see Mal daily, and not always countering with why we do or don't do things "that way."  This was a huge learning and growing opportunity, and I think I've been able to shut up enough to do some of both of those this time.

And I owe Dr. B and my friend Dr. H from back home, a great big fat apology.  I never "heard" you, no matter how you explained it to me.  Dr. H, in particular, told me that the fundoplication did not have to cause saliva to collect in the esophagus once the opening to the stomach was reinforced.  But I'd heard that somewhere before, and all I could think was that having the procedure without being certain that it was essential, would have meant a tracheostomy.  (I do not have any issues with that procedure, if Mallorie should need it, but simply thought one procedure would lead to another and that possibly choosing the first would necessitate something which might otherwise have been avoidable.)  So Dr. H could have told me till he was blue in the face that my fears were unfounded  irrational, but I couldn't hear his explanation.  Because my mind was set, and I couldn't listen.  I think it was a good decision to not pursue the surgery 2 years ago, when Mal had problems after just a surgery, but a year ago, when she had the laryngospasm after vomiting?  That would've been a good time to listen to both Dr. B and Dr. H on the fundo issue. 

But God has been so good to keep Mallorie safe, despite my pig-headedness, and allowed me this 2 month+ "vacation" to be alone with Mallorie to learn.


Laurie in Ca. said...

I am so happy you girls are headed home and that Mallorie is doing so good!!! We all listen and learn when the time is right Connie and you gave a new team of professionals a chance to learn with Mallorie too. Love you girls.

Love and Hugs, Laurie

poolja said...

I am so glad to hear you all are finally on your way home! How wonderful!!!

Praising God with you!

Lisa said...

Praise the Lord to hear you are going home. The saying is true there is no place like home.

Annie said...

This is fabulous news. What a caring team. I just can't get over the wonderful care that Mallorie is receiving in Texas.

In Canada, there are "priorities" and I have been told that kids with "certain" disabilities are not admitted into the PICU. My baby with t13 was admitted....finally...the doctor made a call to the PICU one hour after her respiratory crash.

When I see that beautiful picture of the caring medical team, it brings tears to my eyes.

So happy for all of you.

The VW's said...

YAY FOR HOME!!! Praying the transition goes well and that Mallorie continues to do well! Hope you get some much needed sleep too, Connie! Love, Hugs and Prayers!!!

Jessica mommy to Alex/ RTS said...

Look at that hospital family! Nothing, nothing like it when your baby is sick! SO thankful for great nurses and doctors!

kim said...

Such great news:) Love the pic of all those taking such great care of sweet Mallorie. What a blessing the all are! Will continue to pray for all of you as you head home!!
With love,

Cathy said...

We need an update in all your spare time???

ANewKindOfPerfect said...

Dropping in to check on Mallorie, since we haven't heard from you in a while. I hope all is well!

May said...

Sorry to hear Mal's back in the hospital. I guess we've got to accept it as our second home. Hoping she gets what she needs there and gets home soon.