78 Days Later

Clara is sleeping.  Robert is starting her 9:00 tube feed.  I'm sitting down to try to catch you all up on our discharge day. 

First of all, many many thanks, once again, to each and every one of you for praying us through to this point, for offering encouragement and advice and love, and for celebrating so joyfully beside us at God's mercy, grace and blessings.  We stand in awe of His power and glory and praise him for what an amazing thing He has done in our lives.  We never would have imagined that we'd have so many people, many of you strangers, to walk this journey with us and we will be forever grateful for you.

On Wednesday, there started to be some talk of discharging on Thursday instead of Friday.  Dr. Block felt like our plan of daytime breastfeeding and nighttime gavaching (that's the feeding tube) was going fine and that we really could go ahead and get out of there.  Couple that with a really really nasty case of mastitis for me and he was eager that we all just get home to our own space.  So Wednesday was a flurry of final appointments and meetings with lots of folks to get checked off on things.  Wednesday night Robert and I learned how to put in Clara's NG tube through her nose which was fairly traumatic for me, but now it's done and I never intend to do it ever again (I've made enough nurse friends the past 11 weeks... Holli, Crystal, I will be calling you if that tube comes out).  Then, we roomed in one last time to make sure we were able to handle the feeding pump and all those logistics.  I was as sick as a dog, so fortunately Robert took care of Clara all on his own that night and just roused me every few hours to remind me to pump, take advil, and go back to sleep.  Thursday morning we got the official word that we could go.  A quick note - if you ever spend 78 days in the hospital, you may acquire more stuff than you realize.  It seems that a significant portion of Clara's nursery had slowly been moved to Brenner's.  My poor mother made about 5 trips to the car (and dealing with the elevators that many times at Baptist Hospital is a real gift.)  Finally, about 2:00, we got Clara dressed in her special going home outfit (Thanks, Mere) and we began saying our goodbyes.  We said goodbye to Karen, our daytime nurse in Intermediate.

Karen, one of Clara's intermediate nurses

 We said goodbye to the rest of our NICU friends who we have loved and been loved by so well.  Of course, not everyone was there that day or at that time and it felt weird to not be giving each person who touched us so dearly a proper goodbye.  We did get to have final hugs from Dr. Block, whom we will never forget.  He "bookended" us, as he called it - both admitting and discharging Clara.  And he was with us through some really difficult days at the beginning which made this day of leaving so extra special for him and for us. 

And then we went back to the PICU where we spent the 22 days that Clara was on ECMO.   Those were the hardest days of our lives and in crisis you can really bond and connect with people in a very unique way.  We love that PICU staff so dearly and felt their love so richly as they doted on Clara and expressed their excitement for us to be carrying her out the door. 

Just a handful of the PICU nurses who we love so much.  Wish we could have seen the whole PICU and NICU staffs...

 We spent 78 days at Brenner Children's Hospital and on Thursday we walked out of those doors changed people.  We will never be the same for the experiences we had in those 78 days.  God has taught us much, poured out love and mercy on us that we have not deserved and blessed us richly in countless ways.  Although I wouldn't wish what we've been through on anyone, in a strange way I kind of treasure this time.  I've been in the middle of a miracle.  How remarkable is that?  I have felt incredible sadness and fear and despair, but also experienced such incredible peace and joy and hope that I think may only be possible with the former.  In short, I am thankful.




Clara was wide-eyed and alert as we left the hospital.  She was truly taking in the sights all around her and seemed amazed and interested that there is a world outside of the NICU.  When we walked through those doors and she experienced "outside" for the first time, her eyes were so big and happy.  She likes being free.  Just as Robert pulled up with the car, she dozed off for the first time in hours.

Dozing off as Daddy drives up

When we placed her in her carseat for the first time, those eyes shot wide open again and she cried and fussed, but only for a moment before settling down for her first car ride.  She gazed out the window of the car for awhile and eventually slowly nodded off again.




Once we got home, we took Clara in the proper way through her front door and beneath the gorgeous banner made for her by her Aunt Wendi.  We paused very briefly (it was 98 degrees) for a few quick photos like the one you've already seen.
 


Then, it was time for Clara to meet Rufus.  In all the excitement, we broke all the rules about how you're "supposed" to introduce the new baby to the family pet.  Good thing Rufus is the world's most perfect puppy.  He was excited to meet his new baby that we've told him all about, but behaved like the perfect gentleman and didn't jump on her or anything.  Since he's had two and half months to smell her on us, I think he knew right away what was going on.  He's always been great with kids, but we all felt sure that he somehow knew from the start that she was ours.  Mostly, he's glad to have his people back at his house and around a little bit more.  He's hardly left our side (or Clara's) since we've gotten home.  And yes, Clara has already been indoctrinated with her first few face kisses.  She was just fine with them.

Rufus and Clara meet, at last

In our first hours at home, Clara just looked around like she was trying to figure things out.  All the lights and colors and smells were new, but she never fussed, she just refused to sleep.  Too much to take in, I guess!  This is the expression we mostly saw.



She has slept well at night and eaten well during the day since we've been home.  Mama, Daddy and Clara are all doing well.  We'll write more about our first few days at home in another post.  But, as many of you have anticipated, this is in many ways the end of the story.  We still have some medical obstacles to overcome like getting Clara's feeds all oral and that NG tube gone.  While we are eternally grateful to be home and have Clara with us here, our lives are not instantly "normal."  We've been told by doctors to protect her from people and keep her fairly isolated, calm and restful for the first several weeks or months.  We have a big stack of appointment cards for follow ups with various doctors and that will probably dominate our schedules for quite some time.  And of course, there's just the normal "adjusting to life at home with a baby" stuff.  I'm learning Clara's routines and cues and we're all trying to figure each other out.  All this to say, I will continue to write and post photos, but probably not with anywhere near the frequency that I have the past three months.  We appreciate your continued prayers for us for we know that we still have some struggles ahead of us.  We do feel some sense of closure at this juncture, just knowing that the worst is behind us.  And hopefully over time this blog will evolve back to its original purpose - just a random post here and there about a family trip to the zoo or a special birthday celebration.   Hopefully it will begin to contain a lot less medical jargon. 

Since many of you have asked, yes - I do intend to print this blog in book form.  (There are several cool websites that do this for you).  It's the best way I know to be able to tell Clara her story someday when she is old enough to understand.  This post will be the last in her book.  It is my prayer that when she reads her story, she will know deep in her soul how special the beginning of her life was, that she will recognize the power of prayer, that she will be inspired by the fervor of a community of believers, that she will be humbled by knowing she is one of God's special miracles and that she will always know how very much she is loved by many, but most of all by Her Creator.

Thanks Be To God.