Homecoming Queen

Her last moments at the hospital

...As in "Drama Queen!"  Well maybe not drama, necessarily.  Just that she started out her first couple days at home acting like we should somehow be at her every beck and call (good guess, Ella), and refusing to acknowledge that you're supposed to sleep at night (as many babies do).  It was a little concerning, though, because she seemed to be very uncomfortable and unconsolable, like her tummy was hurting pretty bad.  Then, of course, we wondered if she's not handling her medications well and if that will cause a problem.  But mostly, we think she was just used to getting pampered by all those great nurses at the N.I.C.U. :)

Together at home.  The boys were uncontrollably happy.

However, she's really getting quickly acclimated to a routine at home.  Last night was our best sleep yet and she hasn't been spitting up her milk nearly as often.  Part of it might be because we have been able to get a rhythm started with regard to handling her feedings and administering her medications.  She has 7 meds that need to be given in various amounts 4 times daily.  We think we've figured out a pretty good system of giving them to her so that she has the best chance of keeping them in her belly.  And she has been doing good at that lately.  By the way, you'd think it would be quick & easy to give Ella her tiny amount of medication but it takes a deceptively long time (pretty much the same as getting our boys ready to go somewhere - no matter how quickly you think you can get it done, it somehow always takes a half an hour.  We know all you parents out there can relate to that.)

With Thing 1...

... And Thing 2

Now, back to the day we got to bring her home:  We were a bit unprepared for how emotional it was leaving the hospital.  It hit both of us hard and unexpectedly.  It was a culmination of all those days & nights spent by her side.  All the blog updates, phone calls & texts.  All the prayers & requests for healing.  The ups & downs, the times we felt totally drained and the times we were energized.  The relationships we built with many of the nurses & doctors - and, somehow, even a few of the other babies there (we love you baby Harris!).  Mostly, it was the realization of just how far little Ella has come that brought unstoppable tears of pure joy to our eyes. 

Once we pulled up to our house, the tears turned to huge smiles when we saw how excited our boys were to have their little sister home.  They were just so happy and proud, it seemed, to be her big brothers. 

So in all, getting Ella home was definitely worth the wait.  Even if she is a drama Queen, 

(special thanks to our good friend, Andi with "andi mae photography" for helping us document her homecoming!)

By the way, we didn't intend for our last blog to seem like it was the end of our sharing.  Not at all!  It was just a quick thank you & "wrap up" of her time at the hospital because we were so exhausted from our stay there.  But its good to know that people want to continue following her journey! :) 

70 Days & 70 Nights

This will be Ella's 70th - and final - night at the hospital.  Our exhaustion is outweighed by the joy & anticipation of her first night at home, where she will complete our family.  By tomorrow, Chapter 1 of the life of Ella will be complete.  An amazing beginning to a book that appeared as if it might never be written.  We don't know what future chapters will look like or how it will end, but we believe that God's grace has already made it more beautiful than we could've imagined.  Thank you for being a part of it with us.

Is this really happening?

Sorry for the gap between updates!  We have been pretty busy catching up on a lot of things we were behind on.  But we promise, this post will have enough eventfulness to hopefully make it worth the wait.

Notice anything missing?  This Saturday was the 1st time in her life (after 67 days) that we've seen her face without a single tube sticking in it somewhere.  Wow, she is beautiful.

To cut to the chase, it looks like Ella will be able to come home within the next couple of days! (insert today's equivalent of an old "Hip-Hip-Hooray" chant here).  I know, kinda short notice.  But we'll roll with it!  We knew that there was a possibility that she'd be able to come home by the end of the month, but there always seemed to be something holding it up.  In fact, she had been recently throwing up certain medications that she gets with her feedings so we figured this would take a while to get past.  But apparently she's at the point where we will now "room in" with her at the hospital for a night or two to familiarize ourselves with her medications & round the clock needs while under the nurses' supervision.

This has really snuck up on us, and we are both excited & a bit edgy - mostly because we weren't really prepared for this yet mentally (or household wise).  The biggest cause for our nerves is the way she has been handling her meds (well, that and a hundred other things).  We just want to make sure she is going to consistently tolerate them so we don't run into any problems that we'd be unable to solve without the constant care she's been getting at the hospital.  So we're praying that she'll handle them well and that they'll help keep her heart strong & allow it to continue healing.

We are heading in tomorrow afternoon and will keep you posted on progress when we can.  We are simply amazed & humbled that the day we once thought might never come is close upon us.

Thank you, Lord for your great love.

TGIF

Only 1 nose tube left! :)

It wasn't "Good Friday" yesterday, but for us & Ella it was a great one.  Our little lady just continues to surprise & amaze us with her fighting spirit.  We are excited to share all the latest news - which has been plentiful & encouraging the past 2 days - so here's what's been happening since our last blog:

1.  Ella has handled the feeding well.  So well, in fact, that as of this morning she has already moved from a continuous drip feed to bottle feeds every 3 hours (including nursing time with Mama twice a day).  Since the bottle takes less energy than breastfeeding, they are going to see how she handles this set up before transitioning toward more frequent breastfeeds.  Given how "enthusiastic" Ella gets when nursing (and who could blame her, since she's basically had an empty belly for 2 months), we suspect & hope she will progress to more nursing times very quickly.

2.  I spoke with the cardiologist about the latest Echo and basically its all great news.  Her ejection fraction was estimated at 70% (!!!).  Pretty much normal & acceptable.  What?!  Its just amazing...  There are a couple of lingering, minor concerns - mild thickening of both a left ventricle wall and the pulmonary artery, as well as some evidence of diastolic dysfunction (for all you medical people out there who actually understand).  But all-in-all, her heart has shown that it is "remodeling" itself & becoming functional & sustainable.  Even her heart size is essentially normal now, after being so grossly enlarged.

3.  Last night she weighed in at 6 lbs, 1 oz - breaking the 6 lb barrier!  Now, it might not be like Roger Bannister running the 1st sub 4-minute mile, but it is definitely cause for celebration!!

With all these exciting progressions we don't want to get ahead of ourselves, but we have a sense that perhaps we are glimpsing the beginning of the end of her healing process.  Its a scenario that once seemed impossible, but now appears that God foresaw, planned & is now pleased to bring to reality - to the amazement of us all.

Now we are just looking forward to the end of this hospital stay.  If she can prove the ability to handle normal, regular feedings & gains a little more weight, there's no reason she can't come home.  We will be able to continue to give her the medications she needs (which are quite a few) in the comforts of our own home.  Our dreams may not be that far off!  Stay tuned... We love you all!

Mercy

By His mercy He proves He is love.  I had to remind myself of this today.  God has shown great mercy in all of this.  I felt so weary last night and started worrying and becoming anxious about Ella's stomach.  She had an ultrasound on her stomach Monday and we hadn't heard the results until today.  When I start looking too far in the future, I really become so anxious.  I need to remind myself and take notice of what God HAS done and what He is doing.....He is showing His love in one of His many ways by how merciful He has been.  We are loved and I really need to remember that.

Ella's ultrasound of her stomach was "normal".  So now they are going to pull back the tube that was put in past her stomach and before mentioned narrowing in her intestine.  Pull it back into her stomach and put it on a slow drip to see if her stomach will process the feedings.  I have been praying so hard for her stomach to start working, so hard that at times I don't even have words to pray, but I know God hears my heart and I will continue to trust in Him.

Her heart continues to be functioning in the lower end of the normal range, which is a huge blessing.

 It's hard not to look beyond today and imagine the day that we might take her home.  I am going to continue to be thankful for each day we have with Ella.  I partly write these things to remind myself....be thankful for His mercies......His love.