The Rollercoaster

Everyone tells us that life in the NICU is a roller coaster.  We had our first roller coaster when Ellie was born.  Then Ellie began to stabilize.  Now don't get me wrong, when I say stabilize she was and is still critically ill, but the doctors told us she was stable.  Call me crazy but Ellie seemed to be doing so good, that I thought sky's the limit from here on out.  I guess you could say I had kind of forgotten that Ellie could still have some down days.  Then we had Ellie's first surgery.  Everyone seemed to think it would be so simple.  It's just a tracheotomy.  Kids bounce back from these so quickly and they don't seem to have any pain at all.  Well, as we all have to remember, Ellie is not your typical baby.  She is different, unique as Matt and I like to say.  The doctors have NEVER seen a case like hers.  With that said, Ellie did not react the way most babies do with her trach surgery.  In fact, she reacted a lot worse than they ever thought she would.  Matt and I have been TERRIFIED this week.  I said it earlier in the week, but we were more scared this week than we were the first week in the NICU.  We are always worried, but this week took that worry to a whole new level.  Seeing all the doctors and respiratory therapists a lot more is not something we like to see.  We like them and all, but when they are around Ellie's bedside a lot, we know things are not good. 

Thankfully as I write this tonight, Ellie is doing much better.  We didn't see one doctor today (well I take that back, the wonderful, awesome Dr. Greenberg came by to see Ellie today! We can't say enough about him.  He is priceless in our book!).  Ellie came off her paralytic medicine today.  It will take about 12-24 hours for this medicine to get out of her system.  Today was a lot of watching Ellie and her numbers.  Hopefully, she will continue to respond well to the trach change and will not have to go back on the paralytic.  Mommy and daddy do not want her to have to go back on it.  We think by tomorrow Ellie will be more awake and alert.  She was just starting to move her fingers and toes again when we left.  She is still on the sedation medicines.  With her remaining on these she probably will not be as active and alert as she was before the surgery.  For now, we believe that is a good thing.  Ellie still needs time to get use to her trach. We know and agree this is the best thing for Ellie.  It's hard, but in the end when we are all at home, none of it will matter.

We also heard today that there is possibility that Ellie might get a private room.  If she continues to do well and stabilize we will be able to get on a list that when a room opens up we will be able to move into a private room.  This would be great all around for us.  It will be a lot more quiet for Ellie (she does not do well with a lot of noise) and more privacy for all 3 of us.  Plus the room is bigger and there is an area to sleep if we want to stay the night with her.  All of this would be a huge blessing for us. 

It's been a long week.  It did not start off good but it's gotten better.  We hope it continues to get better and better and better.  We know we will have more bumps in the road.  That's life.  I can honestly say that I had gotten way too comfortable with things.  I think my worry level was down.  I think for me, it was God's way of saying I am not done yet.  Keep your eyes on me.  I cannot and will not lose sight of that. I believe God has a great plan in store for all of us. 

Thank you for all of your prayers.  I know I asked for prayer for little Riley several days ago.  He had a major heart surgery.  I am happy to report to you all that he is doing well.  I know his parents thank you for your prayers.  If you all want to check up on Riley you can go to www.caringbridge.org and under the section that says visit website type in  rileyhobby just as I have typed.  He is one tough little guy. Children are such precious gifts from above.  I will never be able to thank the Lord for the  precious gifts of life that He blessed Matt and I with.  Thank you for all your continued prayers for Ellie.  They mean more to us than you all will ever know....

Love,
Ellie's Mommy