One pound

I am happy to report that things are going amazingly well with Sophie Q right now!  We still have a couple of little quirky things that are bothersome and at times scary but overall, things are great.  It is phenomenal to watch her personality begin to shine through....isn't it funny what hydration can do for the mind & body! 

Unlike her brother at this age, she is full of smiles and giggles.  I remember working so hard to get the tiniest smile out of Cole, but in sharp contrast, Sophie lights up with a smile the minute you engage her.  After all she has been through, this is by far, the most amazing thing.  I realized after rereading my last blog that there were two celebrations I forgot to mention. 

The first, hasta la vista helmet!  The company that came out to measure Sophie's head while we were still in the hospital said that it wasn't flat enough to need a helmet.  Now that she is feeling better, we are spending more time on our belly and less time on our back!  I have decided that should her head stay a little flat, we will mask it with a "bump-it"....they are still selling those, right?!  The second celebration is that for the first time ever, Sophie is really snuggling with us.  We had hit a point around March where she wouldn't even allow us to cradle her when she was eating.  She wanted to face away from us and be completely disengaged.  She now happily allows you to cradle her and on two occasions has even snuggled her little face into the crook of my neck, of course making me cry! 

At physical therapy yesterday she kicked booty at prop sitting and reaching for objects in front of her.  She even held objects in both hands (she doesn't always use her left hand as well) and brought everything to her mouth!  She was simly amazing yesterday and made her mama and daddy so proud.

At her last week's doctor visit, Sophie had gained almost a whole pound (in just a week's time)....here are things that weigh one pound:  package of butter, pint of water, a package of frozen vegetables, a loaf of bread, a package of hot dogs!  Isn't this awesome?!!! We have been jumping for joy.

As I look back over the last six months and think about all Sophie has been through, where she started and where she is now, I find myself singing a line from The Script's For the First Time ~ "we just now got the feeling that we're meeting for the first time."

Lunchbox Days

So it has been almost two weeks since my last posting and we are beginning to finally feel as though we are settling into a "normal" routine.  Let's start with celebrations!  First, we were released from the hospital the Friday before Mother's Day!  Celebrating my first mommy's day with two kiddos was so much sweeter from the dining room of Cooper's Hawk restaurant and winery as was the yummy wine shared with my mother and sister-in-law!  Next, Sophie seems to be tolerating her feeds pretty well overall.  We still have some episodes of major "pukeage" but I think that is more from her icky reflux than anything else.  She is now taking in 4 full ounces every 4 hours for a total of 24 ounces in a 24 hour period.  This is huge considering Sophie was taking half or less of that amount for months prior to being hospitalized. Third, the Friday we were admitted to the hospital, Sophie had weighed in at 13.5 for two consecutive weeks at our pediatrician's office.  When we visited her again on Friday (5/13), she was up to 14.14!!!!!!!  What a huge gain in three weeks!  We were thrilled beyond belief to see the scale throw up those numbers!  And finally, after two weeks of non-stop Coldplay in the hospital, just when I thought Tarek and I could truly take on Chris Martin and his band and maybe even show them up, we found a new song to soothe our sweet little girl....it is called Innocent by Taylor Swift.  This is not Sophie's first dive into Taylor's music as she adores the songs, Speak Now, Never Grow Up, and Enchanted as well.  We love Coldplay but are happy to have a break from it!

Fifteen days in the hospital took more of a toll on us than I think we expected  The Friday we were discharged, exhaustion had settled in, and our "get up and go" was completely "gone."  Tarek filled the air mattress for me and we decided that one of us would sleep in Sophie's room to make sure the pump pumped and that Sophie tolerated the feeding ok.  This was before our brains allowed us to do the math to figure out how to get the pump to run over 4 hours (2 feeds at once) so that we didn't have to get up twice at night.  It took us two hours that night to get Sophie completely settled and asleep.  I think I was asleep before my head even hit the pillow that night.  However, before getting into bed, I hooked Soph up to the pump, double checked to make sure the tip of the tubing fit snugly into the smaller port, and that I had the dose and rate inputted correctly.  I hit the run button and climbed into bed.  I awoke about an hour and a half later to the sound of Sophie shivering....Scrambling out of bed (ever tried to do that from an air mattress ~ not so easy) I looked into her crib only to find that she had somehow, in all of her nighttime movements, unhooked the latch on the big port, which allowed at least 2 ounces of formula to pump directly into Sophie's crib.  Then came the big debate, to wake or not to wake.....thinking back to how painful getting Sophie to sleep was that night, I decided to let her sleep.  As I was sopping up the mini lake of formula that pooled in her crib, I was thinking of the following lyrics Sophie's new favorite song, Innocent:

Wasn't it easier in your lunchbox days?
Always a bigger bed to crawl into
Wasn't it beautiful when you believed in everything?
And everybody believed in you?

Wasn't it easier in your firefly-catchin' days?
And everything out of reach, someone bigger brought down to you
Wasn't it beautiful runnin' wild 'til you fell asleep?
Before the monsters caught up to you?

While I continue to be amazed at all we are learning (tape the big port, tuck the tube into the onesie, don't give Cole a baby shovel as he will throw dirt at his sister), there are still nights where I miss those lunchbox days...We continue to be grateful for your prayers, emails, and phone calls.  Thank you for keeping us in your thoughts! We love you.

The tube is in...

Thank you to everyone who emailed, texted, or called today to check on Sophie! We are happy to report that the PEG tube was placed with little trouble and the MRI showed no signs of fluid on her cervical spine.  The PEG tube differs from a G-tube in that it has a longer tube we will use for the first 6-8 weeks to feed Sophie.  After that, she will come back in for outpatient surgery where the PEG tube will be exchanged for a G tube.  The PEG tube was placed to allow room for Sophie to grow, and grow we hope she does, now that we will be able to get all of the calories in that she needs!  I cannot describe how excited we are to begin celebrating her eating instead of stressing about it.  We are hoping that feeding will begin to turn into a more positive experience for her.

We still expect to be in the hospital for several more days as the therapists and doctors agree that we will need to take it slow to make sure Sophie is tolerating her feedings and the tube.  I am hoping that we are out of here before Mother's Day but should we remain in the hospital we will make the best of it. 

We are so excited to have Cole return to us tonight from Munster.  We continue to be grateful to our parents for all of their love and support.  We could not survive this without them. 

As I type this, Sophie is resting comfortably~I pray that the rest of the night will go smoothly and that we will be able to stay ahead of her pain.  We continue to be amazed by how brave our little girl is.  We are so blessed to be learning lessons on endurance, perseverance, and courage from this sweet, sweet baby.