Wednesday, December 24, 2014

One Year Later: MERRY CHRISTMAS!!!

It's surreal to write this. I'm sitting by our unlit tree {lights burnt out probably thanks to running them constantly even during night shifts!}, on Christmas Eve morning, listening to the gentle hum of the water in the vent humidifier, the pressure of the tubes, the quiet sleeping baby {and her sleeping daddy in the rocking chair}. Our other two littles are asleep. It's serene. It's peaceful. {Editor's Note: by the time this post got published, two other little elves were awake and running the house. So much for peaceful.}

One year ago this week, our lives were so, so much different. Because one year ago this week we had our 19 week ultrasound, where it all began. One year ago this past Monday, I woke up from dreams of pink and black, rushed hurriedly to our sonogram because the unexpected snow had delayed our sitters, and anxiously anticipated seeing our sweet baby. But then it all began...and we spent the rest of our Christmas week in tears. With headaches. Putting on a smile for our little children. Pretending not to be scared. Praying endlessly. Being comforted by my family who was in. Letting the kids open whatever present they wanted as a distraction to us. Trying desperately to get through the holidays. With the exception of a few close family and friends, we kept the news to ourselves so as to not ruin anyone else's holidays. It was hard. Painful in fact. We had been told that Monday that we could lose her anytime, even including that week of Christmas.

But one year later, here we are. God is good. I'm not saying this week was easy because now we're home and she's here with us. This week had some very hard and poignant moments. Our facebook is flooded with friends who are expecting and posting their gender reveals by their Christmas trees. We rejoice for them, but there's that bittersweet moment where we remember back to our Christmas sonogram, and the idea we had to go out after it, buy a blue or pink stocking to surprise the kids on Christmas morning...and some tears came. Bittersweet is truly the word. But we can choose to live in the past and the hard reality that was last Christmas, or we can rejoice.

We choose to rejoice.

We rejoice not because He answered our prayers the way we wanted, because He didn't always do that, but we rejoice because His will meant that she is here with us this very Christmas week, one year later. We rejoice because He gave us the strength to endure days that we never knew could even exist in our lives. We rejoice because He provided for every single need that we had this year. We rejoice because of His loving kindness to our family and carrying us through this last year. Scripture says, "Fear not, for I have redeemed you; I have called you by name, you are Mine. When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you; when you walk through fire you shall not be burned, and the flame shall not consume you. For I am the Lord your God, the Holy One of Israel, your Savior." {Isaiah 43:2-3}.

And the Lord was true to His Word.

I took the morning shift dark and early the other day. I was worried because our night nurse said Chloe was coughing more, but otherwise was doing good. I knew we'd have some labs done locally that day, and began to pray for her health that we'd still be able to do them. I began reading by her bedside this beautifully illustrated and delicately formed book that John Piper wrote based on Job that a friend had blessed me with while in the NICU, and in it this week I found these words:

"Sometimes the spark of faith is slight
And does not make the darkness bright.
But keep it lit and you will find:
Far better this than being blind.
One little flame when all is night,
Proves there is such a thing as Light.
Remember now the place and price
Where Jesus promised paradise.
One answered prayer when all is gone,
Will give you hope to wait for dawn...

Beware,...God is kind,
In ways that do not fit your mind...

It won't be long before the rod
Becomes the tender kiss of God."

I believe these words sum up best our experiences this year. God does not promise easy. But He does promise that He will turn your darkness into joy and that He will wipe away every tear.

This Christmas, same as my post last Christmas when we stood still, frozen in time as the world raced around us, as we waited holding our breath and releasing our tears, we STILL say we rejoice, for Christ is born! He has come to save a world of sickness and darkness and pain and suffering, and to restore us to joy. O tidings of comfort and joy!








The only picture that I do not have that I would have loved to be in this is the image of our family, standing by our front door, with Chloe wrapped in blankets in my arms but off of her vent and all wires as we listened, smiled, rejoiced, and sang with our dear friends who came caroling to our door. I do not have that picture because we didn't take one. We simply soaked that moment into our hearts. But in that moment, with Chloe home, in our arms, our friends gathered around us, and singing praises to the newborn King, that was the best gift of all. 

And perhaps second to that moment, the best gift was that we were able to take all three of our kiddos together in one vehicle with just us, Mama and Daddy, and go to church to decorate for Christmas eve service. It's our family tradition, started when our little family of just myself and my hubs first moved here nearly seven years ago. The tradition of decorating has grown to include our children helping. I remember the year that our son was learning how to climb stairs, and we worried he'd fall while we weren't paying attention since we were busy putting up bows and candles. I remember the year our daughter crawled and toddled around an in between all of the chairs and searching for little berries or bits of styrofoam to put in her mouth.And this year, we have memories of sweet Chloe, chillin' in her carseat, smiling at her siblings as we decorated around her, and then listening to her daddy sing Christmas carols from the piano. This, I might add, was Chloe's first trip out of the house that did not include doctors or hospitals or labs. Her very first trip out was to decorate in anticipation of Christmas. Last year we stepped through the mounting snow with trembling feet, my hand gripping my husband's for support as we walked into our church immediately following our ultrasound to seek prayer from our pastor and friend. This year, we chased our other two littles in, followed by Chloe's big ride, and danced and sang and decorated and rejoiced as a family of five, 
one year ago to the day that it all began.








As our Christmas gift to you, here's a video of our journey. We thank EACH & EVERY one of you who loved on us, prayed for us, walked with is on this road and as we continue the path ahead. I apologize that the video is long {over 12 minutes!!}, but we wanted to make sure and capture her whole story thus far, from announcement, through diagnosis, birth, trach, heart surgery, and finally, HOME in our arms. 





Thursday, November 20, 2014

Chloe is Home for the Holidays!

Chloe is home for the holidays!!!! Means the WORLD to us that she's here, safely in her own little homespital. So much to rejoice over.

And that's just what we're doing.

A sweet friend chatted with my hubs last week about surprising me for coffee with some friends. Somehow, by her creative genius, she ended up snowballing it into an all out amazing pamper me+pamper Chloe baby shower!!! I couldn't be more blessed and had such an amazing time.

I can't lie though. I tossed and turned the night before. My friends are amazing and bless me in SO many ways...but we're all in the same season of life, which is having babies and raising young families. I was struggling the night before with anxiety of wondering how my emotions would be the next day, as I sat next to friends who've had babies since Chloe was born, who found out they were expecting about the time we had Chloe, and now have brand-new-fresh-from-the-oven babes in their arms. I prayed for strength and for joy. That I would be strong enough to actually go, knowing that my friends care so deeply for me that this is their love for me flowing out. For joy to hold their babies and talk about teething and diapers without tears or envy. And I knew that if I needed to, I could be honest with every soul in that room about the struggles I was having with this, emotionally speaking, and that they wouldn't judge, but instead would wrap their arms around me and pray with me for strength. The peace I had knowing this gave me the strength to go.

And the Lord provided both joy and strength.

I was late to my own party. Not because I overslept, and I can't even use the excuse that I was helping with the kids or something. My hubs was sweet enough to take care of them so I'd have time to get ready. I was late because this was the first, the FIRST time out since...well...this summer???...that I was going out without children, and to a place that was not a pharmacy, a hospital, an urgent care waiting room, a grocery run, or a quick grab of coffee. I was hanging with my friends. I can't remember the last time this happened. So I was excited, but also trying to figure out what to wear. I haven't been to a shower in ages...and it's a Christmasy shower...so to dress cute, like holiday wear?? Not that I have any. To dress casual?? The thought crossed my mind that since we're all moms, I should have clarified that we all dress in yoga pants and sweatshirts to feel more at ease. That if they wore the same outfit from the previous day they'd get a door prize. I tried on 2 scarves. I stood for 20...TWENTY...minutes fixing my scarf. Why? I don't know. I was just wanting to actually look nice for once. It was fun to think I'd have a morning where I didn't have to help give a Lovenox injection, to get to put amazing scented lotions on my hands instead of non-latex exam gloves, to get to actually do my hair instead of whip it into a pony and run down to help suction. That I could wear jeans-cute jeans that I'm working my bum off literally to fit back into-instead of sweats.

I was so excited that when I went to leave, I kept asking Alan where the keys were. And he shot me a dumbfounded look back and said, "In the car. That's warming up for you. Right outside the door. Can't you hear it running??"

I ran out the door. Hopped in the van. Checked my lipgloss. Checked for stray children behind the van in the rearview mirror. Then proceeded to back into the trashcan at the end of our driveway. And if that's not enough, I actually backed it INTO the road. Then I quickly took off my gloves and texted my hubs, "So can you come get the trashcan?"

It should be noted here that I think nearly all of us wore scarves that day. We were a trendy little bunch. But seriously, mine was too hot and I kept fidgeting with it. Don't lie, friends, be honest-did y'all take yours off the minute you got back in your cars too?

This is what I walked in to...


Incase you haven't caught up, my friends and I are a bit obsessed with chalkboards. 


The minute I got over my envy of her baby grand piano by the entryway, I was confronted with these letters. J O Y. What my prayer has been through this entire journey. And I knew today would be filled with it. Every single one of us in that room has a story. We've all had chapters where we've had to pray for JOY, because joy is the only way to smile through a storm. It's not with happiness. Happiness and sorrow or struggle cannot mix, but joy and struggle can. 

And today, they all chose to set aside their crazy insane schedules, and love on me and Chloe. 

And the tears formed.

I was actually, in a wild turn of craziness in the universe, not late. So I grabbed some pics of the set up my friend did, while she checked her baked awesomeness in the oven. 






This gal knows my heart, so there was coffee. And creamer. And toasted marshmallow syrup. And for when that was done, home made apple cider like I've never tasted before. 


I asked her how to work her creamer thingy. "Just make it moo!" is all she said. Love it. Love her. Love the decor. And I felt like I was breathing in new, fresh air for the first time in months.

My heart. needed. THIS.


I snuck this shot because I love that she kept the hospitality real: she didn't fuss over every single cluttered detail, but focused on the heart of it all. I love that her counters weren't tidy and shiny, but loved and layered with heartfelt hand me down recipes, crafts, notes, pens, and phones. She knew where to draw the line on be a host, and be a friend, and she took the time to hug me and welcome me instead of rush back to the kitchen to check on things or tidy up the rest. I love that about her. #learningfrommyfriends

My friends poured in. We talked. We hugged. We laughed. It felt surreal. I can't lie...I kept my phone right beside me half expecting Alan or the nurse to call. I nearly fell off the couch when my friend swiftly grabbed her four month old out of her carrier to show me how much hair she had, then I had to apologize for overreacting at the move because, well, moving Chloe requires slow, precise judgement and placement of tubes and cords. It's been so long since I've seen a baby be moved around on a whim, without talking through where her suction machine will go...love that we were able to laugh that moment off though.

My friend hosting the party asked each person to write an example or way that I define strength and beauty because those are two traits that came to mind when she thinks of me. Please know, I do not say this to boast because there are far more days that outweigh the good where I actually feel strong and like my life is beautiful...but today, this was just the reminder I needed. I felt as if the Lord was speaking through my friends telling me yes, you are loved, you are worthy, this path is for a reason, I am using you and your family through this to teach others. It was a much needed reminder. I can't even begin to sum up the heartfelt words that were spoken amongst us. The tears that slowly crept out of our eyes and eventually to a waterfall of hot tears on my cheeks and other's. I cannot thank each individual in that room enough for making me feel loved. I can't begin to say what these words mean to me and that I will cherish through this journey, just so long as my kids don't find the cards and write on them before I have a chance to put them up!

It was amazing. Each of us have beautiful lives filled with family and kids and schedules, and yet, we were there, gathered in His name, together. Fellowship. Unity. Loved. The fact that we all made a point to be there, to be present in each other's lives, meant the world to me. My soul aches when others complain about how busy life is, especially when they lead perfectly normal lives. If you want it to slow down, you have to be the one to make that decision and to make that a priority. My friends did that for me to show me how much they care, and I'm speechless as to how to thank each of them for changing their schedules and gathering together on a Wednesday morning. {Side note: Please know that I completely understand for those who could not be there ;). I was in shock that this many were able to come!! Please know that I still think you're all awesome and amazing ;)}

After tears, there was laughter. And food. Amazing, home made goodness.

There were gifts for Chloe and for me. One of which my sweet three year old found later that day, and we only realized she'd lathered herself in my new Christmas scented Bath and Body Works lotion because the scent was so good that my hubs and I each looked at each other wondering where that smell of Christmas was coming from, only to then find our daughter's hands LATHERED in it. Couldn't help but laugh.


Two friends got the exact same gift from the exact same store and wrapped it in the exact same gift bag. Just sayin.


And for the record, the baby in the pic below belongs to its mama in the pic above on the left ;). We fun to see the babies be passed around the friends and let the mama's be hands free, if only for a few minutes. 



That last picture, with me in the middle (holding a fresh bag of Starbucks coffee)...well my friend on the right just gave birth about 2 weeks ago. Seriously. I could hurt her for looking this AMAZING just TWO weeks after an epidural!! How in the world does a new mama do that!? She swears it's just amazing concealer. I've had three kids. I don't buy it.


P.S. That's me, holding her sweet born-during-a-full-moon baby before she was even twelve hours old. Another day that the Lord provided the joy and strength to visit her in the hospital where I would have had Chloe, had it been a normal birth. But I was overjoyed to meet Miss Alex, and wouldn't trade that moment or those emotions for the world.

But back on subject...


Although I'm not a fan of this pic because my eyes were practically swimming out of my head, floating away with the tears from just a few minutes prior, and I have no idea what possessed me to attempt a Princess Diana pose with my head, but yet there's such beauty in this pic. I'm so grateful to this lady. She not only sung my kids to sleep for an entire YEAR (in her defense, she helped record a song at church that the kids loved so much, they'd beg for it on repeat at bedtime), but took the time to love on me and Chloe and thus our family. What you can't see is that approximately 3cm below the cutoff of this pic is a precious growing belly holding a treasure inside. Again, blessed to be filled with nothing but absolute joy for her and her growing family. 

I can't sum up what that morning meant to me. I can't put into words what it means when we willingly face life and accept the roads we're on and ask the Lord for joy to walk those roads instead of sit on the bench and ask why. I can't explain the amount of love in that room. I can't describe or put into words, into black and white letters on this page what it felt like to be surrounded by such strong, amazing women, such amazing mamas. My heart and soul needed this. My eyes needed to take this moment in. My ears needed to hear the reminders that even though my days consist of me at home helping the nurse and barely able to schedule any time out of the house, that they're still here for me. For our family. For our littles. For Chloe. 

They haven't moved. They haven't left. They're walking this road with me. With us. They're helping by His grace to breathe life into our weary souls. 

And for that, we give thanks, and begin the holiday season. 











Saturday, November 15, 2014

It's Beginning To Look A Lot Like The Holidays

It's beginning to look a lot like the holidays. 



Thanksgiving is two weeks away. Less than that actually. Christmas is just weeks away.

And with Christmas comes the one year mark of when we learned of our sweet baby and the journey we'd be embarking on...

The holidays can be hard. Especially for those who have lost loved ones or been through trials this year. For those suffering financially or healthwise. There are many reasons why it can be hard. Last year, I slept on the couch all Christmas week because I couldn't sleep. Oxymoron? I slept there because I couldn't sleep. We were overwhelmed with the news following our sonogram on the 23rd. I was literally in fear that entire Christmas that I was going to miscarry. We were in shock. I remember sitting on the couch on Christmas morning fighting back tears, as our then four and two year old ran down the stairs wide-eyed, ready to open gifts and celebrate. I wiped hot tears off my cheeks as I took pictures of them opening gifts. We tried desperately to make that day joyful for them.

She wasn't supposed to survive that week...or the next...or the one after that. We spent each day from December 23rd on in a state of confusion, fear, anxiety...at least on the days we stopped trusting our Lord... We were reminded that this was exactly why He came down to earth for us...

But this year...SHE'S HOME. SHE'S HERE. SHE'S WITH US.

We got through last Christmas because of the Truth that Christmas is. It's about a babe being born into a world of sin and disease. A world of hurt and suffering. Of a young woman trusting in her Lord that He would see her through this miracle and bring this precious, perfect gift into the world, to be of the world, and to die for the world.

We're choosing to CELEBRATE this year as the holidays come around. We're soaking them up. We're blaring Christmas music. We're watching Christmas movies already. We decorate the tree tomorrow. I normally beg to leave it up until January 6th, Ephiphany. The day that is celebrated when the wise men would have made it to the baby. {And for any who love true facts, this is the TRUE 12 days of Christmas. It comes after Christmas, not before!}. But last year, I think I took it down on Christmas night.

But this year, it's up early. We're soaking up family time. We're celebrating Thanksgiving by giving thanks DAILY to Jesus for all He's done and continues to do for our little family, especially our little girl.

Christmas 2013


Tidings of comfort and joy. Those were the words I put on our chalkboard outside last year when I decorated, before we knew of the coming ultrasound. Those words, though washed out from snow and rain, stayed on that chalkboard till a sweet friend changed them this fall. Little did I know what those words, what that simple popular phrase, well, lyric from a well known Christmas tune (God Rest Ye Merry Gentlemen), would mean to us this year...

comfort... a state of physical ease and freedom from pain or constraint, or the easing or alleviation of a person's feelings of grief or distress.

joy... a feeling of great pleasure and happiness, or to rejoice.

Christ came to meet us in our distress, in our pain, in our weakness, in our grief, in our loneliness, in our diseased world...to bring us joy, by living to die for us. 

As the holidays approach, as the stores stay open later, as the menus get planned, as the shopping gets done, don't overlook Christmas. Don't overlook why He came. Worship Him this season. Even after all we've been through, He still deserves our praise and worship and awe this season. 

Chrismas 2014





Sunday, November 9, 2014

Rejoicing Again

Today I held a precious new gift. It had thick, black hair. It made squeaks and it wiggled in my hands, beneath the depths of its warm swaddle.

My sweet, dear friend was blessed to introduce her new baby girl into the world in the early morning hours, during the full moon. I was beyond excited for them and was able to go visit them in the hospital and meet this stunning new creation.

I held her in my arms. I realized that I asked her daddy to put her in my left arm, simply out of habit. You see, when I hold Chloe, this makes my right hand free to help suction, to adjust the vent tubing, to move cords more easily. I didn't think about the fact, as he gently passed his new bundle of soft pink to me, that it didn't matter how I was holding her because this time there weren't tubes in the way.

I've only held two babies since having Chloe. I've guarded myself. I've put up walls that haven't been ready to come down.

But slowly, the Lord is removing the bricks I've so intricately built up around my heart when it comes to this topic...

...of babies...
...of new life...
...of friends being pregnant...
...of hearing about due dates and births and genders...

I've struggled, and I confess, I've sinned. I've been jealous. I've felt envy. I've been sad knowing they're having these incredible pregnancies, happy sonograms, and holding perfect 8lb babies. We've known so, so many friends to be pregnant with us when we were pregnant with Chloe. Friends who found out about their pregnancy while I was carrying Chloe and preparing to deliver her. Friends who've had their babies since Chloe was born. I've watched ultrasound pictures get posted online. Watched gender reveal parties. Read birth announcements. Seen first images of newborns, fresh from the womb.

And sometimes I cried. And sometimes I rejoiced.

It's been hard walking this road. This road of the bittersweet. My friends have done nothing wrong, and nothing to wrong me. They've been amazing. They've loved on us, prayed for us, baked for us, they've blessed us beyond our comprehension. And yet I've struggled with why it's bothered me so much when I hear of the latest prenancy...  I think it's because, although I get really sick with pregnancies, I've enjoyed being pregnant and soaked up each moment of it, even while cursing the last meal that just came back up. But with Chloe...I lived every single day wondering if it would be her last? How would I know? What if I didn't feel her? We missed out on the happy sonograms, getting a sneak peek at our growing child. It took a lot of the joy out of carrying her, and that's my own fault for not trusting the Lord to grow her fearfully and wonderfully.

But each day, and each new baby, and I say this because they're everywhere, all around us right now, each day has gotten somehow better. Not necessarily easier,...just...sweeter. I must be honest and say that walking into that hospital, where I delivered my two older children, and where I should have had an amazing delivery with Chloe, that I could feel my heart race a bit being back there, knowing that I didn't have that amazing 'normal' birth experience. But I'm learning that I have amazing friends, who have been so patient with me, and I know love our family so, so much. And I'm learning from them that they'll be there for us. In so many ways. And one of them said at one point that they're so excited that Chloe is joining our circle of friends and kiddos and playmates because their children will get to experience the precious gift that Chloe is, and that Chloe will teach them so, so much. While I've been sitting here pouting that I can't have 'normal' playdates or that Chloe won't be anywhere near the 'normal' milestones, my friends have been reminding me that they love her no less. That if anything, they love her more than I could ever imagine a friend to love another's child.

And I am blessed.

There are days that are hard. Days seeing other babies who were born around Chloe's age because I see what a healthy five or six month babies look like, sounds like, moves like. But I also find myself rejoicing that their babies are healthy and thriving. I'm learning, one day at a time, how to take down one brick at a time of that wall that I've built up, and allow myself to love others more and to be thankful they're in our lives and that these will be the friends our littles, including Chloe, grow up with.

One layer at a time am I allowing God to remove the bitter, and replace it with more of the sweet.

So today, I got a text from my friend saying that her daughter was here, and that, "She can't wait to meet you and her new baby buddy Chloe :)." 

And we sat there, me in the rocking chair, and my friend delicately in her hospital bed, as I held her amazing new gift from the Lord, and we talked of childbirth and exchanged stories. Of how our hearts are to love more than one little being, and if we're loving one more than another and how that's not even possible, and yet as mommies of more than one child, we actually spend some sleepless nights wondering if we're doing a good enough job loving them each the same. We talked of homeschooling and public schooling. We talked of nursery decor and cricut cutters and making homemade ornaments for our Christmas trees this year. And I held her sweet, dark haired daughter the entire time. And it felt so, so good. And it was such an amazing moment for me, to know and truly feel that my heart is growing in love for each child because every. single. life. is. precious. And it was peaceful, knowing that Jesus is tearing down that wall I've built...and allowing such love back in.

I love that Chloe will be surrounded by so many amazing and godly women who care for me, and for her. I love that Chloe will have so many friends who will love her, and who she will teach about life and love and beauty and the Lord. I love that although society sometimes excludes such amazing children like Chloe, that our friends will love her as their own. I'm excited about playdates again. I'm excited to teach my friends' kids about Chloe. I'm excited for this next new chapter, now that we're home. I'm thankful to my friends, who have been so incredibly patient with me and forgiving towards me for not knowing what to say or how to act simply because they were holding their newborns while mine was still in the NICU. Seriously, thank you to each of you who have been so patient in loving me through this hard time. Please forgive me for the silences when my heart just wasn't ready to rejoice, for the tears, for the awkward moments when I knew you had new news to share, and instead you watched me fight back tears instead of sharing in your joy. Thank you for your patience and love towards me. 

I'm thankful that He's changed and molded my heart in a far different way than I would have done on my own. He's taken the bitter within me, and He's made it sweet. He's taken the sad, and made it joyful. He's taken the hard, and He's softened me. He's taken the jealousy and envy, and replaced it with overflowing love.
Tuesday, November 4, 2014

Finding Normal

Brace yourself. This isn't the post you probably think it is. And it includes nudity. Don't say you weren't warned. Keeping it real, folks...

Today is Monday. Monday is family day. Family day consists of us being Chloe's nurses. We do it all on our own on Mondays from 6am until 9pm. It's our rare chance at personal family time. We do this on Saturdays as well. And though we're gaining nurses we love, and are so thankful for, we so look forward to those days and wish we had that each day.

Today has been relaxing. At least somewhat. This morning was a bit more of a whirlwind. Chloe had a rough evening yesterday and ended up throwing up 30ml of fluid...that's over an hour's worth of feeding. It's like a thanksgiving meal to her. And it all came up in three episodes back to back to back. Our nurse was awesome and knew to sit her up so she wouldn't choke on it, even though she was still coughing on it. I was upstairs bathing kids when this happened. To say it scared me a bit is an understatement. I was then on the phone with the Home Vent team at Children's asking what we should do. In theory, she shouldn't throw up with her fundo she had this summer, but it is technically possible, especially the older/bigger she gets. And thus she did. They said it is most likely that she is just not tolerating her increase in feeds (we went up from 25ml/hr to 26ml/hr this week) and to go back down to 25ml/hr, and if more throwing up continues to give her Pedialite via her tube instead of formula.

I found myself two hours later, once Alan was home from work, purchasing Pedialite at my Happy Place (Target) just to be armed incase it happened again. And I also found myself calling my hubs to say, "Hey, can you please call Home Vent back and just ask to make total sure for worst case scenario, what to do if she throws up again and if she'd aspirate? Do we bag her? Do we do an emergency trach change and then bag her?? Do we do CPR and bag until EMS arrives??"

That was our "normal" yesterday. That was our "this is our new life" moment. We truly have conversations including EMS and CPR often. Yesterday I cleaned out the Frozen puzzle case that was having issues and put the puzzle pieces in baggies, then looked at the bottom board of the base, and realized it'd work perfect as a CPR board for her size, so under the crib it went. See, this is normal for us.

A few days ago I was released from duty to go to Radina's and sip coffee and work on my Etsy shop. I was on a high because the day also included a date night with my hubs after the 9pm nurses showed up. There was a loophole in the universe and we ended up with two night nurses because one was still orientating. We had a friend lined up to be there with the kids and do bedtime so we could sneak out, knowing that there were three competent adults in our home loving on ALL our kids. But alas, twenty-three sips into my pumpkin spice latte, I received the email saying one of the nurses was sick. I knew immediately our much anticipated date night was not going to happen. I was bummed. It takes a lot to pull off date night. We need it for the sake of our marriage and sanity. We needed it something fierce, but it wasn't going to happen. But we tried our best to not get too upset and just went with it-what else could we do?

This was our "normal" the other day. No date night was "normal" for us. No date night in the last month has been our "normal"...unless you count sneaking out of the PICU for two hours out at Taco Republic the eve before we brought her home again.

We're getting slowly acquainted with this "new normal"...and yet, there's nothing normal about it.

Well, there might be a few normal moments. Normal parenting moments. Like noticing the boogies wiped on the hallway wall and asking my husband if he knew anything about the boogies about 3 foot high wiped on the wall. And then today, when my little ballet dancer twirled her way over to the stairs and plopped down on them. I asked what she was doing, and she leaned forward so I could see her finger. I asked her if she had a boogie and was about to wipe it on the wall. At least she was honest in her confession.

So today, we relaxed. We baked biscotti together. We traded off calling the various doctors this morning to update them from last night's spewing episode. We talked to the company that delivers her Lovenox injections. We updated Home Vent team. We received our November supplies from our med supply company in town. It's like Christmas in here with boxes and bags everywhere of supplies. And Abi twirled in her dress and asked each of us to dance with her. And we did. To Christmas music blaring in the house. And there was tickle time with mommy and children. And there was book reading time and cuddles with daddy and children. And Isaac's wild imagination today. And Abi's gentle, loving spirit, telling us a thousand times over, "I wuv you." And melting our hearts each time.

But there was still a moment this afternoon where I looked at my hubs and said I was anxious, and I didn't even know why, other than because I've barely been out of the house in the last two weeks, other than to the hospital to get her levels drawn and to Target to grab a few groceries. Because I read a chapter in the book Bittersweet about this lady having a dinner party with all her friends in their different walks in life and how sweet it was to read of such togetherness, and realized I haven't been surrounded by my girlfriends for chat and hangout time in forever. Because we haven't done one unscheduled thing in months. Because we can't do anything unscheduled these days because it's all dictated by the nursing schedule. Because it was looking gloomy outside today and depressing my mood. Because I was in a funk and anxious. So upstairs I went, for a 30min soak in a hot, steamy tub.

And two minutes later, a little princess followed me.

As I set my Real Simple magazine on the edge of the tub and slid my foot in to test the hot water, a little voice rang out right behind my bum, and she was already stripping down...

"Mama, are you taking baff? You're taking a baff!! Oh, oh can I take a baff wif you!!?"

"No sweet, sweet little child, you may not. Mommy needs some mommy time."

"Oh, ok. Well I will rub your back!" Then she disappeared, only to return seconds later with my lotion on her tiny little hands. The smell of eucalyptus infused my senses as she gently rubbed and patted my back and arm.

"Ok, thank you for my back rub, sweetie! Now why don't you go downstairs and play."

"Oh, my hands is sticky now, Mama. I go wash dem in da sink!"

Meanwhile, a preschooler wandered in, and this time I tried to hide the nethers and peaks a bit for a tad more privacy and a bit more innocence to his eyes.

"Hey bud, why don't you go downstairs and play video games with daddy!!"

"Oh! Good idea!!!!" He ran off, only to return seconds later saying daddy said after Mommy gets out of her bath can they play video games. Facepalm.

"So Mommy, did you know that a new SONIC movie is coming out!!!! It's coming out and it's Sonic the Hedgehog. Do you remember Sonic?? I wuv to pway Sonic!!!! And it's a MOVIE!!! Do you like Sonic.....," My sweet, growing boy, proceeded to tell me all about his favorite video game character, while one hand rested on the edge of the tub and the other on my back, rubbing.

"Hey buddy, how about you go play downstairs for a bit, Ok? Mommy needs some quiet time."

"Oh Mommy, you forgot to take your ring off!!! You need to take your ring off when you're in da baf. You should take your ring off. Oh, and you can pway wif my toys if you want. It's ok, they're right there. You can play wif them. Is the water hot? Or just warm? I don't like my baths hot, just warm. Daddy makes them too hot, but you make them warm. So do you know what?? Sonic is awesome!!...." By now he was sitting on the edge of the tub, one pudgy little boy hand, with dirt under the nails, rubbing my back while the other rested on the tub edge to balance him. He talked non-stop for nearly ten minutes about Sonic and Sonic racing, his sweet breath only inches from my face. He was so excited. He just wanted to talk to me...and he had me cornered to do it. And he rubbed my back the entire time. And it was so sweet. A bit awkward, but sweet.

And then I couldn't help but laugh as I looked over and asked the princess, with her auburn hair falling in tangled wisps around her neck and face, wearing her princess dress (hand-me-down flower girl dress), with her Frozen necklace and her Hello Kitty necklace on, and what appeared to look like she was putting on my makeup. I asked her what she was up to, and a little head peeked around the door, holding a Q-tip...IN her ear!

"Abi no!! Take it out!!! Only Mommy's do that!! Take it out. You're not obeying! I said stop! Throw it away! Only Mommy does that!!!"

She knew I was cornered and couldn't get to her, so she stood there, starring me in the eye, with the Q-Tip in her ear. Then she whipped it out and said, while looking cross-eyed at it, "Eeww. Mommy my ear had a boogie in it. See!" Sigh. She then proceeded to throw it in the mounting pile of trash that I keep meaning to empty out, and her princess ruffles brushing past the toilet seat while I freaked out in my mind about all the germs that were creeping onto it!

Next, the little princess sat on the edge of the tub, rubbing my arm, while my little man in his Batman shirt and ripped-knee holes sat on it as well, also rubbing my back, all the while I was still desperately trying to not bare all. We were quite the sight. And they gibbered and jabbered and I laughed. Till I cried. And hollered for Alan. Who walked in, took one look, and burst out laughing and asked if he edited it and censored it if he could get a picture for the kids' baby books. NO. But we laughed so hard I nearly peed, which wasn't a possibility since I was in the tub!!!

So much for five minutes of peace. He left with the kids and locked the door behind him. I thought I was in the clear to relax, until I heard a muffled voice pressed against the door in "Do You Wanna Build A Snowman?" fashion saying, "Mommy, wet me in! Wet me in! I want to come see you! I'm tired of pwaying downstairs."

We laughed through it. I went upstairs depressed, anxious, somewhat sad and self pity party for not getting more time out of the house, but then realized that these moments, these awkward family moments of laughter and love and togetherness (although the family bath was a bit too close for me), this is what it's about.

A friend and I were discussing the term normal the other day, and she said you know, there's really no normal, for anyone. That the word normal isn't really a good word to describe anything because what is normal? It's different for each person and each family. And in our case, we've been trying so hard to cling to the idea of a new normal. But now...I'm giving up on the word entirely. We're living life. One day at a time. One crazy, wacky, fun, sorrow and joy filled, day to day life. I choose to say we're living life, and an abundant life at that, not choosing to say we're finally figuring out our new normal. Because it doesn't exist. And I'm finally letting go of hoping it would.

And that's ok.

Praising Him tonight for these precious, tender, awkward moments of joy.



Friday, October 31, 2014

We Are HOME {and we are THANKFUL}

Our Chloe is home.

Our family is together.

Our hearts are full to overflowing.

It has not been without difficulties, sacrifices, hard lessons, and learning to live our lives in a completely different way. But it's so, so worth it. It always is.

It's included tears. On the first few days, when "normal" settled in and I realized I can never just go somewhere. I can't just get out anymore. It's included frustration and fatigue. It's meant no such thing as a date night out. It's meant hours upon hours of orientating new nurses. It's meant moment after moment of reminding the children why we can't do certain things.

But I continue to be amazed. Not once have the kids asked why. Not once have they questioned why things are so, so different than before. Not once have they complained that we can't do certain things because of Chloe. Instead, they've been amazing. They've taken to some of the nurses. They ask what time the nurses come. They ask if they can help. They help get us supplies, gloves. I constantly find random bows in Chloe's crib, thanks to her big sister.

And it's included so many moments of "wow, our family is together," and, "whoa, we're a family of five," moments, the type that just kind of hits you and you're in awe of the very moment that you look around the room and see each person enjoying being part of this crazy family.

We brought our sweet girl home October 3. Then flew her back on October 13. She got a virus. A "cold" to us, but we couldn't hear her murmur quite right. So we spent the next 8 days in the PICU. And we're back again. And there was fear in that moment, when we sent her on the plane, in a storm, back to Children's. But He brought us through that storm, just like others before...

And we're doing this.

And we're adjusting.

And it's the hardest thing we've ever done.

And we're learning sacrifice. Give and take.

And we're blessed.

And we're thankful to all those carrying us through this. For the random friends showing up with coffee on cold mornings after long nights. For friends bringing food with steam curling off the top of the dishes and filling our tired bellies and souls.

And we're learning. We're learning her schedule, the kids' new schedule, new work schedules, new nurse schedules.

And we're smiling and rejoicing. And we're dancing in the living room to White Christmas on family movie night.

And we're rocking our sweet girl.

And we're playing more with her.

And we're soaking up every. Single. Minute. With her. With our family. Togetherness.

And we're so, so thankful that she is here. She is home.

And we continue to take this road one step at a time. One prayer at a time.

And sometime, when I have a coffee in one hand, a sleeping baby next to me, and children quietly playing, I'll write more. I'll write about the hard days. I'll share about the good days. I'll let you laugh with me about the chaos that is our household. I'll share stories of love and laughter in our little home. My heart aches to write and my fingers to type. I long to share, especially with other new mama's and daddy's of little special kids, and especially with families anticipating home health care and what this crazy journey is like...

But right now, I'm focusing on family. And life. And new routines. And my sweet, sweet baby.

And as the weather chills and the hot chocolate swirls, and the calendar starts to look a lot like Christmas, we stop first this month, this new calendar month of November, a date we were originally told we'd never see with our sweet daughter...

...to give Thanks.

To all of you.

To Him.



*Follow Our Chloe Elizabeth on Facebook to see updated pics since we've been home

Sunday, September 21, 2014

Thank You NICU Family

It's quiet. The kids are {finally} asleep. My mind has been thinking on this the last few days. I had it all written out in my head during my shower the other day, but alas, no time to write this down. It's been a bit of a crazy week. Just a bit. A tiny world-sized bit. And I guess I've been procrastinating a bit because it's almost too good to be true, that our girl is FINALLY coming home. Which she would not be doing without you and all you've done to heal her, breathe life into her (literally), and carry us along this journey. So since the rest of this last week before she comes home will be chaos, now is my chance to say...

Thank you. 

I thought through idea after idea of what can we give you as a token of our appreciation, as a momento to remember Chloe, as something to wrap up the last five months, but you deserve so much more that something that will sit upon the shelf and gather dust...

Dr. Mc~You deserve a brand new pair of pointe shoes. Because Chloe is a "delicate dance" as you so often said. You were the first to meet our Chloe girl and not take your eyes off of her. You showed such compassion for her. We are forever grateful. You also deserve some sort of medal for the way you sailed through her first week of test after test after test, then led Chloe's first care conference, complete with 14+ nurses, doctors, and specialists. Thank you for fighting for us since Day 1. Thank you for crying with us. It showed us how much you care for your patients and their families, and that tiny act meant the world to us. A simple thank you isn't enough. It never will be.

Dr. P~You deserve a certification from Mike Rowe of Dirty Jobs for inspecting Chloe's stooly (new word, not in your medical dictionary yet) diapers. You also deserve your own light up question mark because Chloe seemed to have the most questions on your shift. But you never failed to mix humor with reality. To agree that she is a gray zone baby, but to make the most of this situation as well and bring laughter to her bedside. It's because of you that she tore down that tower! Thank you. And our cat is still alive ;).

To all of the NICU Neonatologists who had Chloe~You've ALL been amazing. It's not the easiest breaking the news to parents that, well, you've "just never seen a baby like Chloe before." Well, then let her pave the way. And with that, you have paved the way as well to know how to address babies like her in the future. Give yourselves a pat on the back. And Dr. O~Nothing gave me more joy than to suddenly see a smile burst across your face at the end of the pre-discharge meeting. In that simple gesture, I knew that you were saying it's HOME time. We still have a long road ahead, but that smile alone made us feel so excited at what all Chloe has accomplished because of doctors like you. Thank you.

PACT~You deserve a gift certificate to your favorite shoe store because you wore out your current pair chasing us down, always coming back to find us if you hadn't caught us by the bedside. Always checking in on us regardless of your crazy day and schedule. I cannot thank you enough for the encouragement, insight, laughter, and espresso, even if the latter only happened once and I'm still not convinced that you really have a machine in your office. Do you even have an office? Because you're EVERYwhere. And we're thankful for that. And thankful for the day you announced during rounds that, "Hey, you did your hair today! Good for you!" ;). And to L for the chocolate and ears to listen. Thank you so much for your encouragement when I sobbed into my notes as reality hit after this last meeting. Anyone who willingly encourages me to drink coffee and shop at IKEA is dandy in my book ;). Thank you.

To the night shift Charge Nurses~You are amazing. You made me feel so comfortable being one of few late night owl parents in the NICU. You never made me feel weird for staying so late. You reminded me that this is my baby, my child, and to stay and rock as late into the night as I needed. Saying you missed me last week was the sweetest thing ever because it showed that you're not in this job for the income, you're here to save lives, sweet, precious little lives, and to care for them and take charge over the sweetest and most tender floor in the hospital. You talked me through coding events. You made sure we understood everything that was happening. You stopped in to check on her often after that. You remembered us, there, back in the corner at D39 and always said hello.

To the front desk staff~You all deserve the best coffee and chocolate around!! You didn't just sign us in, you asked about our child. You supported us. You loved on our other littles. You smiled when we smiled, and you ran with me to the elevator when I ran out of the NICU in tears and was practically hyperventilating just to make sure I'd be OK. You checked in on Chloe. You made sure I didn't text-walk myself into the wall. You are all so amazing and we cannot thank you enough that each and every single time we walked through those doors on 3 Henson, you greeted us with love. Even if you did watch me through the camera and laugh when the door got stuck on me. Thank you.

To Child Life~You deserve an award for patience for all you did for our other littles on the day you taught them about their Chloe dolls. You patiently went over each piece of tubing, wires, IV's that Chloe had with our littles and taught them why and what and how and answered a MILLION questions. You made an impact on them. Our son still is saying he wants to be a doctor. And I noticed it the minute you handed him his first set of gloves and you were going to help him put an IV in his baby Chloe doll. You checked in often to ask about them and to discuss how they were coping. Thank you.

To each of our nurses~If there wasn't a rule that said we couldn't have 50 primaries, then we would! We were touched and blessed by so, so many of you. Each of you brought love and support to her bedside. We sat for hours watching how you interacted with Chloe and your other babies. Your skill is above and beyond. Your knowledge and wisdom and the way you advocate for our daughter during rounds never ceased to amaze us. You took extra shifts just to have Chloe. You knew she'd met her primary max, but still requested her if and when you could. You stopped us in the halls on surgery days to ask how she did. You said you were praying for her and thinking of us. You shared with us things that Chloe has taught you and it made our parent hearts swell with joy.

To the NICU janitor~I still don't know your name, but you are the sweetest. You always made sure to not disturb Chloe or us as you worked. You won the best scrub award time and time again ;).

To her nurse practitioners including cardiac team~You amaze us. You kept it real, but never gave up.You were her #1 fans. You coined the phrase, "But it's Chloe..." and knew that meant that she doesn't exactly follow a well beaten path. And even if you call us ten years from now, I'll still know your voice and probably freak out a bit ;). Might I suggest texting if it's a non-emergency ;).

To NICU RT's~Cannot thank you enough for your wisdom and expertise. For talking us and our shaky hands through our first trach care attempts. For answering so, so, SO many questions time and time again, even if you'd just explained it fifty times to us the hour before. For being calm and patient during extubation attempts. For allowing me to help soothe her during it and reminding me that a mama's touch is so, so important. For simply being a familiar face in such a scary world and thus thankful that our paths crossed again. For encouraging us that we can do this when we get her home.

Finally, to her Primaries...

{Pause for tears...no not yours, mine. I can't type through tears.}

You deserve the medal of bravery. Of honor. Of valor. I'm having trouble even summing up all that you've all meant to us. You were the ones that checked her pulse, and ours. That listened to her heart, and ours. That fought for her, and us. That loved on her, and us. That bought her clothes ;), even if they were wayyyy too big and after all your experience with petite babies should have known better than to think she was that big ;). That welcomed us each bright new day, and stayed up with us sharing stories and talking by her bedside late into the night so she could learn the sound of laughter. That held our hands. That got our sense of humor, and had some of your own. That we watched an engagement proposal unfold before our eyes and got to discuss the fun wedding details with. That we heard stories of your own kiddos happenings and birthday parties. That shared about your weekends spent on the ball diamond. That bought and spoiled Chloe with gifts. That made her first official bow on her first hat and helped the day she was delivered. That made her her own special blankets. That prayed with her. That bought her bows and slippers.

That fought for her. That bagged her. That stayed by her side as she coded. That helped intubate her. That made eye contact with me far across the room, over the heads of multiple nurses and doctors as you breathed for her by bagging until her tube was in. Whose eyes conveyed, "She's OK," and thus allowed us to breathe. That prayed with us. That cried with us. That wrapped your arms around me as I sobbed.That cringed a little each time you took her blood gasses constantly every couple of hours as you watched her vent settings and tried to help figure out her desats. That skipped your lunch break to do urine cultures, blood cultures, and trach cultures. That carefully charted each and every desat every fifteen minutes for an entire night, then miraculously got me a parent room so that I'd be close and tucked me at 3am. That helped us ask the hardest questions parents should never have to ask. That held her hand. That stayed an hour late on more than one occasion to chart. That missed lunch and took breaks late and nearly peed yourself because you didn't want to leave her side when she was unstable and made us threaten to get you a catheter and feeding tube so you wouldn't need to leave her side. That made sure she was warm when her little body was cold and having trouble maintaining heat.

That snuck me pumpkin spice coffee by her bedside on surgery day. That made her a little matching trach on her tiny elephant. That kept a watchful eye on her from afar on days that you didn't get her, but went into protective mama mode for us anyway. That didn't mind that we called in seven times a day when we weren't there with her, and never got upset if we forgot and called in during shift changes or trach care.

That taught us how to take her temperature. That taught us how to change her tiny diaper with so, so many wires to dance around. That decorated her NICU bed and made banners with her name so all the floor could see who she was and announce her arrival to the world. That carefully and strategically handed us our daughter and all her ensemble of cords and tubes to hold. That reassured us she was ok as we rocked her and listened to the monitors. That taught us trach care and g-tube care and wipe baths. That still don't make fun of me for how many Q-tips I use. That provided Alan with XL gloves even though it was probably a challenge to even find them. That danced for us! That sang to Chloe girl. That called her by her middle name when she was naughty. That gave her pep talks. That gave us pep talks. That washed her laundry for us when we weren't there. That always made sure her elephant taggie was comforting her. That made sure she wasn't in any pain. That read to her. That had morning sunrise playtime with her. That introduced her to her boppy even if she gave you the stink eye. That made her hand prints and feet prints and scrapbooked the pages of her baby book each month for the last five months. That let me do even the smallest acts, like weighing her diaper, so that I could feel more involved as her mommy. That scrapbooked Father's day and birthday cards from her to us. That always remembered to tell us her weight in pounds and ounces, and never hesitated to look it up each time we asked. That made sure she was dressed exactly as I wished on picture day since I couldn't be there.

That ALWAYS made sure her bow was on.

That got us through this. That reminded us we can do this. That reminded us He's got this.

That loved on Chloe.

That loved on us.

That loved on our littles.

That became a part of our family, as we became a part of the NICU family.

What once was such a scary and frightening place so soon after her birth soon became such a tender place, and will FOREVER stay in our hearts. And it's thanks to all of you. Do not ever think you just come to work and help babies. Because it's more than that. You save lives. And not just the babies...

THANK YOU.



Chloe Home Q&A

As our other post announced, Chloe is getting ready to come home.

What does this mean? So, so many things.

Discharge date is one week from this Monday. We will have a nurse driven to KC, then ride home with us.

Chloe is currently working on building resistance and strength for her trip home. This means she is using what is called an inline HME{slang for heat and moisture exchanged} as a "humidifier" of sorts to moisten and warm the air in her vent for the ride home. This is because her real little humidifier on her vent is too big for travel, so she must use this piece attached to her vent for any trips outside of the home. This tiny piece of plastic means a lot to her. It means travel is possible. But not without hard work. This tiny piece creates resistance on Chloe and thus she is working daily to build strength to stay on it for at least 3 hours (our trip home is just over 2).

Chloe is also working on gaining a consistent weight. This is crucial that she gain in time for her next heart surgery {possibly spring or whenever she outgrows her new shunt}. Currently she is 7lbs 9oz. She has been gaining, but on Lasix day she tends to lose a lot and have to start back over the next day on weight gain.

These are our two main prayer requests: To be able to hand the HME, and to gain weight.

Along with that is the fact that our other daughter has a cough. We are praying so hard that she would heal from this cough quickly. Praise that so far the rest of us are healthy and no fevers and that Abi's fever is now gone for 24+ hours. Please, please pray because if any one of us gets even a cold, she cannot come home on schedule.

Other prayer requests:
-For our insurance(s) to get all sorted out because private insurance, in cases like this, do not cover all that much. We're grateful for it, and it's meant we haven't paid hardly a dime on over $2 million in hospital bills, however, it will not cover a lot of things, like adequate nursing, some important and expensive supplies, etc.

-For nursing. Currently the company we have chosen has 11 nurses that have said yes to caring for Chloe. We'll have a couple observe her this coming week to get a better idea of what this tiny bundle is like and what it'll be like to care for her.

-Travel. Alan heads over Monday thru Wed, then comes back home, then we both head over together on Thursday.

Questions:
1. What does discharge look like? What has to be lined up?
We've already had our home assessment by the medical equipment company. They will return this coming Wed afternoon with all of Chloe's equipment so that we can complete equipment training (please pray for knowledge, wisdom, skill as we learn this). We'll stay Thursday through Monday in KC. Friday and Saturday nights will be in the parent room on the NICU floor as we parent and care for Chloe all by ourselves under observation. They give us a day of rest on Sunday at RMcD house, then on Monday morning the adventure begins. We have people lined up in MHK to care for our kiddos over these days. We're trying to get nursing lined up and schedules decided and ready.

2. What does nursing care look like?
We will be Chloe's primary nurses and care team. We, the parents. We are the leaders, the nurses will follow because God is amazing and has a sense of humor and thinks we're equipped to do this. In other words, we were told that while we are beyond blessed by trained registered nurses in critical care NICU setting, we're about to venture out into the world and will most likely have licensed nurses vs. registered nurses. Although many of them have trach and vent experience, we know our girl and what makes her tick and how to suction her per her specific desires.

We will have nursing care most likely 24/7 for the first two weeks. At some point we'll reevaluate, and as we begin to be more comfortable on our own with Chloe, then we'll taper down on nursing care. That means we'll begin to only do 16 hours with nursing care/8 hours on our own. Then 12...then 10...then eventually we'll get to only 8 hours of care per day (and we can decide when this is, be it night so we can get rest, or day so that I have extra help while also taking care of our other littles while Alan is at work).

It's still unclear the requirements for who is with her, meaning at the beginning we need 2 trained people with her at any given time. This means appointments in KC will require either both parents, or one parent and one nurse, but we no longer will have a nurse traveling with us if we both would like to go. This means if our nurse's shift is done and it's just the two of us and errands need run, or a child needs taken to urgent care, or the mommy needs a coffee break....well...then we'll hope and pray that some people will come forward who are willing to be trained to be with Chloe so that we can do that from time to time. This person/these people will be required to learn infant and trach CPR, to learn to be suctioned, learn her numbers and what to watch for, learn feeding pumps and gtubes...it's asking so, so, so much of our friends. But without this, we'll never leave our home...

3. How will you go on a date night again?
Well...not sure...until we have others trained and learning Chloe, we cannot leave her. So much for the Rend Collective concert. Meaning, raising Chloe is about sacrifice, and we're willing to do that to make certain our daughter is in safe hands until we're comfortable leaving her. Date nights will get creative and will probably include lots of game nights, movie nights, making fun of furniture listings on craigslists again (fun pregnancy pastime), ordering delivery after kiddos are in bed, etc. One, someday, we'll get our date nights back.

4. Visitors Far & Wide {and Close}?
At the beginning at least, we'll greatly limit visitors. We'll ask you health questions and find out what color your snot was recently. We'll ask you to not only wash your hands, but use one of the 4 to-be-installed wall mount hand sanitizers. We'll ask you to not visit if you're a smoker. We'll ask you to possibly wear a gown if you were recently around someone else that had a cough or cold but are ok yourself. Or we might say sorry, now is not the time, nothing personal, just the state of well being of our open-heart-surgery-lung-diseased-daughter. Alan's got a great post coming on this for more details... And it means the visits we do have will probably be limited on time. Remember: Chloe's schedule of medicines, trach care, PT, OT, getting down for naps, baths, assessments wears us out, then add a 4.75yr old and a 3 yr old into that mix.

Family visits: Limit 2 people. We'll probably ask that you get a hotel because we're on lockdown here (remember, this is not just our home anymore, it's a hospital room, and just like in the hospital, we need to limit number of visitors at any given time). If it's only 1 person then we might be able to house you here but it will have to be discussed in advance.

Friends: Call first. Text first. Contact us first so we can make sure we're ready {i.e. hand sanitizer stocked?? Will they need a gown? Will they need gloves?? Are they delivering coffee or not? ;).

Visitors bringing meals: Please know we are so, so, SO appreciative of the meals and extra help. Our hearts are swelling with joy and peace knowing you're all there to help us out. However, please know that dropping off a meal does not necessarily mean a visit with or getting to meet Chloe. This all depends on your health, our level of sanity, and where Chloe is at on her daily routine. Visits wear her out too because they throw her off her little schedule, so we have to be sensitive to her as well and not wear her out. Growing and breathing are her biggest goals, and that's hard if she's exhausted. This does not mean no visits or meeting new friends, just that you'll need to check with us first.

4a. Holidays?
It means we will not be traveling home to Iowa for months and months. Nope. Not with a baby who can barely be on the HME for 3 hours just to get home. Not chancing exposing to cold weather and the risk of sickness. It means we hermit-it-up and enjoy the holidays this year as just our tiny family of 5.5 (the nurse and cat will probably count as family on those days). Two words: Get Skype ;). We LOVE to skype family and friends. We need to know they're still there supporting us and cheering us on even though we can't always have them here. We'll encourage any family and friends to try setting up routine weekly skype dates.

Please know this does not mean we want to be left completely alone. We need and crave interaction. We pray this is for a short time and that we can continue regular visits and playdates soon. We pray that if it is a good day for all that we would be able to get out, to meet a new friend of Chloe's, to have little friends over for playdates with the kids, or to send our kids out for a playdate. Our hearts crave "normal", but there will be a transition from hospital to home, and for Chloe's health, we do not know how many days, weeks, months this will take, especially since this is cold and flu season upon us. Please do not leave us completely alone~text. Call. Check in. Email. Facebook us. Message us. Remind us you're there. 

5. How is Chloe doing with everything else?
Eyes-follow up with eye clinic at some point. Doing good. Might need minor surgery in future. Will most likely mean glasses when she's a bit older.

Ears-Moderate to Severe hearing loss, mainly due to how she's fearfully and wonderfully made, although some of it could be caused by fluid in her ears due to her cleft palate. She might need tubes to help with this until her cleft palate is fixed (around 1 year old). Sometime this week we'll do molds for her hearing aids. She can hear, but it's like the teacher on Charlie Brown. It's muffled and cloudy and because she's a baby, our language is unknown. It's like Isaac shouting downstairs from upstairs that he needs more TP and me hearing him but can't understand what he's saying. Sometimes it startles her if we're talking by her and she is asleep and didn't know we're there. Music, however, soothes her. We this think is because she can understand that it's a repetitive melody vs. hearing our voices and not knowing what exactly we're saying. Need to get ipod and speakers for her bed so that she can have music throughout the day and with her naps. She'll be getting hearing aids in the next 3-6 weeks, and will wear them whenever she's awake (they come off for naps and nights).

Club Feet-the right foot is still only needing physical therapy (PT), while the left one will have a splint. She also wears a 'soft splint' on the right foot to keep it from being able to bend too far upward and back. She wears her splints at the same time-one for four hours, off for four hours, off at night. We're waiting to fix her left club foot until she's bigger and more stable from heart surgery as she needs off her blood thinners for that surgery (they slice the achilles tendon and then have it grow back and casting during this time).

Heart-stable enough to bring her home. Doing good. No more random desatting episodes. She still takes a tiny dip from time to time if she needs suctioned. Next surgery is the Glen and that is whenever she out-grows her shunt (hoping not till spring). She'll be closely monitored here at home by nurses and us and also by frequent (every 2 weeks-ish) appointments back in KC through their CHAMPS program.

Lungs/Respiratory/Trach-her lungs are still healing from all those months of desatting and lower oxygen to them. She's working hard to wean off her vent. She's a ROCKSTAR. She's currently so low on vent settings that all she needs is a tiny bit of positive pressure so that when she exhales her lung doesn't close in (think sucking air out of baggie), but enough pressure left to keep her lungs open when she exhales. This is mainly the ONLY thing she needs her vent for these days. She'll work on weaning off vent when she's home, which includes wearing a little piece of plastic similar to her HME that moistens the air (has filters on the end) but it literally is just a piece of plastic stump so to speak hooked on the end of her trach meaning no tubes. She'll gradually work toward being on this for minimal times throughout coming days and weeks until she weans off the vent and only needs those. To keep the air moist and not dry (think of how your body gets in the winter dry air and breathing issues it causes), she'll always wear that piece if she's off the vent but until she can no longer have her trach in, which will be around age 3 or 4 depending on when her last heart surgery is. In other words, she might not need her vent and tubes for much longer, but we need to keep that trach in place for a few years. It's what provides her stable airway for all her surgeries as well.

*A note on her trach and vent. Yes, technically it is life support. We have a baby on life support here in our home. Many are asking and concerned about how long she'll have to be on this "life support". But remember, she's not a vegetable. She's doing amazing. She's learning and growing and gaining strength and reaching her own set of milestones. She's barely on any settings for her vent, only enough to give her a bit of umph after she takes breaths. Her trisomy has given her a floppy airway, but that doesn't mean in time and growth it won't heal. We've had some refer to her vent as life support and it makes us feel uncomfortable, like we've made drastic and bad decisions to keep our daughter alive. Please know that it was not an easy decision to put her on the vent, but it was a very much prayed about and well informed decision, and for those that do not know or are not familiar, many, MANY babies and kiddos are on trachs and vents as they grow and to help them breathe and grow so that one day they can be off of them. You've seen her smile with it ;). You've seen her grasp it for comfort when she's trying to sleep. It's becoming her new security blanket or taggie. It's a part of her now, and it's not so scary to us. Learning the settings and controlling it-yes, very scary. But the actual idea of it is no longer as intimidating. And it's ok to stare, but ask questions while you do. Remember, it does not hurt her and her ties are not choking her. It's new and different and at times uncomfortable, but she is not in any pain with it. Please do not judge our decision, especially if you are unfamiliar with what a trach and vent are. We would love for you to learn beside us. We were intimidated by it at first as well, but we're learning and becoming more relaxed by asking questions. And saline bullets to flush the suction on it are like little mini squirt guns ;). I only speak from experience of accidentally shooting one of our primaries ;).

Kidney-so far, so good. She's on blood pressure meds as needed. She is on a diuretic to keep fluid off her (2x per week). This helps her pee off any extra fluids. Pray she never gets UTI's as any infection to her kidneys causes trouble and risks.

6. What's life like with a trach baby at home?
Yet to be figured out. However, it's surreal to hear that we need to have a 24hr pharmacy, that we need to inform our local ER of her condition, that we have to call local EMS and make sure they're aware of her, that we are asking various friends in different neighborhoods if in case of power outage, can we come crash any time day or night with her because she needs her ventilator and monitors plugged in {and because if not, then we camp out at the ER until our power is back on}, that we need to be getting a landline installed this week instead of just our cell phones, Gone are the days of just running an errand, going to Target, even just going to church will look different and present its own set of crazy logistics.

It's about being trained to know what to do in any circumstance. It's about knowing that it's ok to say no to visitors and help if they're sick. It's about asking for help when we need it. It's about relying on so many others other than ourselves to get us through this. It's about learning to play well with others {new nurses are intimidating and we're in mama/papa bear protection overdrive right now}. It's about being Chloe's biggest advocate in all of this.

I'm sure there are still many questions, and we'll try to address them in coming days and weeks, but these are the most popular asked and this helps us to not have to repeat ourselves because she's so complex and it's wearing. But also, don't be afraid to ask any questions. Just might help us if you email them or text them to make sure we have time to adequately answer them for you. Ask about her trach. Ask for pictures. Ask about ventilator. Ask about how she's doing each day. Ask about PT/OT. Ask whatever you'd like. We're open to discussion and are huge fans in helping others understand the uniqueness of Chloe. Just know we might not be able to respond immediately.

There are many unknowns and fears and worries and anxieties we still have surrounding all of this, but cannot all be addressed in one packaged blog post. We'll reveal those and how the Lord is taking us through them in future posts.

And in the meantime, we'll rest knowing He's got this. He's been with us this far. He's been with us since December when this all began. He was there the day He created her within me. We will continue to follow on this journey. We will continue to go wherever He leads.






Saturday, September 20, 2014

CHLOE is COMING HOME!!!!!!

Chloe is COMING HOME!!!!

Incase you haven't heard the news, we had our pre-discharge meeting last Wednesday, and then a whirlwind began when the home vent team decided on September 29th, 2014 at 11:30am that our sweet girl will breathe in earthly air, listen to the birds tweet, and feel the warmth of the sun on her precious and delicate skin. 

The last few days have been crazy, and our minds are reeling with information and planning. Because of that we haven't posted in a while. So consider this the first of many posts though, including what we'll expect bringing her home, becoming hermits (our attempt to be germ free for Chloe), and a list of most asked questions and our attempts at answers. 

But for now, let's just celebrate. We'll worry about those questions and thoughts and fears and concerns tomorrow. Tonight, we'll just celebrate that we're bringing our baby girl HOME.

And that means I've been nesting. Just a bit. Ok, a lot. A ton. This house can't be perfect enough for our sweet pea. We've been busy trying to get everything set up so that one week from this coming Monday we can walk through the doors, change her diaper, check her settings, and sink into our big comfy chair with our baby in our arms and. just. be. 

With our other two children, I greatly enjoyed nesting and setting up the nursery. This, however, will be a bit different. It's not a nursery; it's a living room. It's not a baby's room; it's a NICU room set up in our home. It's not all plush stuffed elephants and soft rugs anchored under big cribs; it's a a feeding pump on a hospital pole, a ventilator, an apnea monitor, a pulse ox machine...

But here's our attempt to make it feel as much like home for her (and us) as possible.