Chloe Update: Critically Stable

Yesterday afternoon Chloe's team {think 8+ doctors/specialists plus Chloe's Daddy there and me on the phone} had a round table discussion of all things Chloe.

Please read through to the end and absorb these notes we took and thoughts we've had.


Chloe's Condition: Critically Stable. 
Chloe's Prognosis: Somewhere between passing away at any given moment -- 10 years? 12 years? 2 years? 5 years? If Chloe had a Magic 8 Ball it'd say, "Ask again later."

Let's explain:
Critically Stable means she's almost stable enough to come home and try to thrive here and at home and show us what she can do. The critical part means she's always a very medically fragile child. With no cure. Stable means with meds and correct med treatments we have the hope that she might get home and thrive and do well and surprise us all, as she has many other times before when we were greatly concerned. Critical means she is living on the edge and could tip the scale either on the side of something happening and her passing away quickly, or go downhill at anytime, or she could tip the other way, show us she's a fighter, and keep on keeping on. Hence the #becauseitschloe movement.

What this means:
Chloe is a gray zone baby. She always has been, and she always will be. There is no cure for her underlying condition, and there will come a time when her body simply cannot manage itself anymore based on our medical intervention this side of Heaven. But every time she's been thrown a curveball, she has also proven that she's a fighter and usually lands, at some point, back on her feet. Which is a fun little analogy because she's never put weight on her feet, so in a crazy round-about way, I guess that's Chloe's way of showing us she can stand on her own two feet. By freaking us all out, then smiling at us and saying, "Haha! Scared ya that time, didn't I!?" Because she's a cute little stinker who freaks us all out and keeps us all on our toes and makes sure that we know she runs the show. Well, we know that God runs the show, but He lets her think she's getting her way. Toddlers these days...

I digress. Back on track. This means that there's just simply no way to predict how long we'll get to have our sweetpea around. We just don't know. What we do know is that the list of concerns that had us all nervous last year has shifted and changed as of January. We knew this list would change somewhat after heart surgery, but we all never really saw this kidney issue coming on so soon.

Our new list of highest concerns is her fluid balance vs. her kidney function. There are also new medications and new accessories. We'll list them out below:

New Accessory: Port placed under her skin in her chest. We'll be giving daily injections of a drug called Lovenox to help prevent blood clots that could happen because of this port. As parents, we'll have to relearn how to give injections, and potentially learn how to draw blood from this port and flush this port. Please pray for wisdom and knowledge and skill for us. The port gives us constant access should we need it for meds, draws, or emergency situations.

Enalapril: She's had this before for her blood pressure, and our hopes are that it will help her kidney function a slight bit more. She'll be starting it now and we'll give doses cautiously because there can be less than happy side effects, but in her case, it's worth the shot to at least try. We can also take it back off if deemed necessary.

Fluid Balance: The fluid needs to dry up. But the one kidney needs to like how we do this. And at times, it doesn't like it. If we give too many diuretics, then the kidney numbers start to rise, indicating that the kidney function isn't the best/her kidney isn't liking this game. But if we don't give fluid meds, then she gets puffy, and on the days that she's a puffer fish, she's not happy and we can see she doesn't feel as well.

>Unfortunately the two will never play very well together. And because no one has ever made a shirt that says "I Don't Play Well With Others-Said the Single Kidney", we'll have to choose to let her kidney numbers be slightly higher than anyone wants while we try to dry up her fluid issues. The hope and prayer is that she'll eventually get the fluid under control without hurting her kidney. But we all don't really know how this will play out and it could end up that the fluid balance issue is what ultimately takes its toll on her kidney and causes it to shut down. If her kidney starts shutting down, that will be a sign that other organs are starting to struggle, and we'll know that it's time to stop pushing.

>However, at the CURRENT MOMENT her kidney is doing ok. The function is good and each time we're careful to watch her numbers and adjust her fluid meds, the kidney numbers keep trending down, which is what we hope to see. The point is this is GOOD for right now, and we HOPE this keeps up, but we also KNOW that overtime and in the future this could take a turn. Our PRAYER is that this isn't for a long time.

Where we go from here?

We know that Chloe's condition has no cure, but that she is responding to treatments now, so we rest in that and march on. But there are lines where we'll stop.
>No ECMO {machine that allows heart-lung bypass outside the body}
>No heart transplant, kidney transplant. She's simply not a candidate with her list of symptoms. We've known this for some time, and have already said that it's off the table.
>No dialysis for her kidney. This would simply put more strain on her little body and be too invasive.

However, there are some things that are dependent upon what she shows us she's ready for...

>Currently we're taking cleft lip/palate off the current list of to-do's because she simply isn't stable enough for another surgery. However, if she comes home, thrives, rocks it, and weans off her vent and a few other issues that she'll need to prove to us she can do, then perhaps by Fall or in a year or later we'll consider this again. It's not a top priority, and we all know it'd likely push her over the edge right now. But it's not completely off the table. Just is for the time being. It's up to Chloe to determine the timeline for this.

>Heart surgery. In theory, there is one more heart surgery that can be done for her called a Fontan. There are variations of this surgery based on that specific individual's heart. It can be done anywhere from age 3 to even age 10 if needed, but Chloe needs to be more than stable. She needs to be walking and talking and off her vent completely, meaning decannulated for this to happen. This has always been the plan for Chloe, until now. If she's struggling, we will not do another heart surgery anytime soon. If her heart struggles now to the point of needing a surgery now, it is simply not an option. However, if in 2 years or 3 years or more she's thriving and ready, then we put it back on the table. It's all conditional. It's all based on how she is at any given time. Should she thrive and live 3 more years, then it's a strong possiblity. Should she spend this next year struggling, then we know it's not in her best interest. But right now, other than the fluid issue, her heart is actually not our biggest concern.

Chloe's team has also advised with care and concern that perhaps it's a good idea to get Hospice involved now. I personally freaked out when I heard this. I'm not ready to give up on my daughter. But the team explained that getting them involved now means they can get to know Chloe so that they can help with assessments of when we should admit her or make appointments for her because it's a set of eyes on her locally, 2 hours away from her team. They can also help do home blood draws and other medical things that we'd hope to not have to take her to our local lab for to have less exposure considering she's delicate and it's still cold and flu season. They'd be a listening ear and resource for us and our other children. They'd be a nurse we could call at any hour if it's an hour we don't have our home nurse to come and help administer something or assess something.  And if Chloe's rocking is and thriving, then we'd be allowed to sign off on Hospice in 2 or 3 years or so. They explained it's a resource and a branch or a helping hand to our current home health care we receive for Chloe. It's extremely hard for me to wrap my mind around the fact that I might have a child using Hospice simply for the fact that it sounds so doom and gloom. And I've cried daily about this for the past week. But at the same time, this is reality with Chloe and it is a resource and it does NOT mean that death is at the door for her. Using it now does not mean that she is passing now. The world taught me that Hospice is a shady word used when someone is dying at home. The team has expressed that the word Hospice is a resource for those caring for a critically ill loved one at home, whether for a time until they pass away, OR for a time when they are thriving and do not need the resource anymore. We'll talk through this as a family and decide if and when we'd like to get them involved. I urge you to please support our decision either way and at whatever time we choose to involve them, and for the sake of our already overflowing minds, do not assume this means her time has come.

What's next?
With all that said, Chloe is still here. She's still being an ornery little stinker who's smiling and getting up in her high chair daily. She's still kicking and playing and growing teeth. She's still yanking her lines, throwing her taggy, and playing with baby wipes one after the other. SHE IS HAPPY.

So for this reason, we set some goals (icky, icky word that we don't really like. Don't get me started on that stupid "quality of life" saying. There are days I don't get chocolate, so let's just admit right there that no chocolate is a poor quality of life. It's all relevant). Let's call them dreams for Chloe. She had a setback this past weekend with dropping her sats very low and needing higher oxygen. The only reason we can all come up with is that it's a side effect of the anesthesia she had the Friday before. We pray that's all it is and she shakes off these desat episodes soon.

1. For Chloe to come home to thrive and grow and do her best to rock it, she needs to be between 30%-40% oxygen. This is roughly 2-4 liters. We need her to meet this goal for the simple reason that traveling home is not an option based upon need for oxygen tanks that can hold that much. So we pray she keeps her sats happy so that she can keep the need for oxygen at 2 liters.

2. Start the Enalapril and watch it cautiously to see how she reacts and if it helps her kidney. We've got to name her kidney. Just sounds like it deserves its own name, don'tchathink?

3. Get Hematology on board on her team now that we'll be giving the Lovenox blood thinner. Figure out a way to do weekly blood draws at home with a local lab that can get results sent ASAP to the team to check both her Lovenox level and kidney numbers, as well as things like her sodium and potassium based on her diuretic doses.

4. Consider when for Hospice help.

5. Give her two weeks to get all of this in place and to show us that she can stay consistent for several days in a row on diuretic doses and oxygen. Once she can do this, we'll get to bring her home. Our goals  dreams for Chloe are to thrive. Simply do the day in and day out of caring for her while helping her to be comfortable and happy and just let her grow and gain strength. Although she has such a list against her, she's still here and is SUCH a fighter and we're not giving up on her because she's continuously showing us she wants to be here. We do the mundane everyday and make each day count. We soak her up and let her get loved on by her siblings. We love her as best we can, be it snuggles in bed together, reading books, playing, letting her rest, tickling her toes, and on top of all of that provide the best care-giving that we can as far as medically speaking. We do also know that these concerns mean more attention now, which means most likely more hospital stays to be monitored closer for things like viruses or if fluid balance swings, and more frequent appointments to be seen.

We pray for more days with her. We pray that it's the Lord's will that she'd live 2...5...10 more years. But none of us knows. We refuse to let the team talk us into her days being short and numbered because if that's the case, then we would have spent every day that she's been on earth and before she was born thinking we'd lose her that day. We prepare our hearts and minds daily that any day could be her last, but we don't play in our mind daily how to plan her funeral or what color casket because SHE IS HERE. We know that she could pass away at any given moment for any various reasons from her trach to her kidney to her heart to her lungs....but we also know that she is here and God has blessed us with this day with her. And as far as we all know, it could be weeks, months, years, or even a decade. The team always laughs hesitantly with us when we say 10 years because they simply don't think she'll really do that well...but do any of us really, truly know how much longer we have to walk upon the dirt of this earth? No. So we soak up each and every day and make the best of it. And we crack jokes and make light of all of this and hope you don't think that's wrong or mean or a bad coping skill. We do it because at the heart of it, we need to do our best to smile even on the hardest of days. Because we simply cannot frown through every single day fearing the worst. Because my heart cannot dwell daily on the thought that I will very likely bury my precious child. Perhaps this is what it's like when Proverbs 31:25 says, "She laughs without fear of the future." Because I know that ultimately my God is in control and I have to trust Him that much.

And because we are living a life that is loving our healthy kiddos while trying to give the best care possible to a very critically ill fragile delicate child, there are going to be days that we lose it or it's messy or it's hard or we're scared. We're still going to hibernate and quarantine. There are going to be raw moments where we want to scream at the world why this happening, and other days when we simply rest in the Lord's hands and thank Him that she is here. That we have gotten nearly two years with her and we pray for more. We ask for patience as we continue to walk this path that society says was never worth it, that doctors told us to abort in order to avoid, and that the world thinks is too hard to walk. There are going to be tears, and there is going to be laughter. Because I've said it before and I'll say it again: Life is the intersection of suffering and joy.

And we'll walk this road by faith and not by sight.

And we'll hold fast to the truth that in this world we will have trials, but behold, He has overcome the world.

And we'll find joy in the mundane, hope in the suffering, and love will bind it all together.

And for the record, the smiling girl in the green onesie on the top row was just 30min after she coded on us and needed chest compressions and we figured out her trach came out. That's how quickly she can tip the scale onto the scary side, and right back to the happy side. She freaked her daddy out big time last week with that little stunt. #becauseitschloe #chloefreaksusallout #butwestilllovethatredhead 

Real & Raw & Hopeful

She's still there, in KC. We're still here, at home two hours away. And her daddy is going back and forth, between daughter's side and work, between hospital bed and quick hellos to us so he doesn't get our germs and endless pavement for the past 2.5 weeks. Our kiddos still have colds, so we have to keep a loving distance and a lot of movie rests to try and get over these germs so we can get our youngest home, or at least be together in the same town as a family. Because I've had glimpses of what the kids have shared with me, it has to be Alan to stay by her bedside to not chance exposure to germs. For this reason, I haven't held my daughter's hand, breathed in her scent, or rocked her for these last 21 days. But I guess on the flip side I've been coughed on, sneezed on, snotted on, peed on (yep that happened), cried on, fevered (new word!) on and more from her siblings.

And it's hard.

And we're all so ready to be together.

And we're all tired of the apartness (new word!).

And we long to be together.

Her overall fluid balance is getting there. Slowly, but hopefully, surely. Her kidney numbers are playing games with us and we're needing to stay one step ahead, while also watching her closely to not jump the gun too much on making changes in her meds. Her single kidney is not a huge fan of big changes. A quick recap for those just joining in: after heart surgery our tiny dancer began a gentle and tiptoeing waltz between too much fluid from heart/lungs vs. too dry for the one kidney. We found a balance back in November. Chloe vowed to hang up for ballet shoes for a while and take a break from dancing, and we were allowed to come home, with very specific doses of three different diuretics. In mid January Chloe got a virus, which then dehydrated her, and we reacted by pulling her fluid meds, however we did not know of the dehydration portion at the time and simply reacted to her high kidney numbers thinking she was getting too many diuretics. Taking away her fluid meds while she was dehydrated did not make for a swell (pun intended) outcome. We danced around doses and labs at home for nearly two weeks before we all just knew it was time to get her admitted for better care. She was flown over to KC and admitted on Wednesday, January 27th.

We've begun to have discussions and what we'll call fact finding missions about the possibility of a port (portacath: a small port placed under the skin with a catheter inserted into a vein so that meds can be administered with quick access or labs can be drawn easily). Chloe is a hard stick. A DIVA. For real, folks. That stands for Difficult Venous Access. I don't make this stuff up. DIVA seems to fit her personality just as much as it does her veins. We've tried many different times and ways for access, but at the heart of it, she just plain isn't a fan. We've weighed the pros and cons, and ultimately as long as we can find a place for the port that is not in the chest (due to heart reasons), then a port in her lower region is most likely doable. The fact finding mission was done by ultrasound on Saturday and we hope to get results tomorrow. This port would be under the skin, not visible above skin. We can care for it at home with the help of her nurses.

Also a part of this fact finding mission was asking nephrology (kidney) team to check her one kidney and see how it is doing handling these higher numbers and what its current function is. For a normal person, levels of creatinine (shows function) are 0.0-0.7 in children and 0.6-1.2 in adults. Chloe's usually sits around 0.5-0.8. Last week it got up to 1.5. Not happy numbers. We're wanting to make sure that while we find this fluid balance that we're not disrupting the function of her kidney. And for the sake of being real and raw, if her kidney would ever need dialysis, that is a stopping point on treatment for her as it would be too much for her with the single kidney/lung/heart balance plus basically living in the hospital. We just know it would not be in her best interest. Thus, we have to protect her kidney as much as humanly and prayerfully possible, and that means paying special attention to it right now.

There is nothing about this journey that is easy. There is a lot about this journey that brings us such joy, like when she plays with wipes, meaning baby wipes. They're her favorite toy. She passes them from hand to hand, rubs them on her face, licks them and sucks on them. Weird little cute creature. You can read through the many moments of joy she brings to us and we've had with her both at home, and oddly enough, even in the hospital.

But under it all, under all that joy and contentment in the season we're in, is this other layer. And when you peel away that last layer, the rawness of the skin below, now exposed to air, begins to burn and ache and pulse hard. Because at the heart of all of this, there is no cure. Her heart condition does not have a cure. If she were not on a ventilator, if she had two kidneys, if there were not so many other issues and ifs (new word), then perhaps a heart transplant would be the someday thought. But for her, it's just not an option. And dialysis, if that kidney goes bad, is not an option. And there are some things that are stopping points on treatment, and other things that a go for treatment. And we know this. And her team knows this. And her team wants to know all of those stops and go's in case we'd ever need to make those care decisions, even if it's years from now, just so we've talked and thought through things while Chloe is somewhat stable. We've had some of those discussions again this past week thinking ahead to have those discussions together with the whole team next week at Chloe's possible discharge meeting.

It's hard to think through what's best for your child on a daily basis and with daily things. But the salt to the wound is deeper when you realize the fact that Chloe is and has always been a grey-zone baby. That while these words are simply laid out on paper now in hopes of never needing them, that there is a heaviness in your chest as you even think through and pray and discuss them. We're positive, but we're also real. We're optomists, having a plan in place,  but hoping to never use it.

But we're also people who pray. We pray for the Lord's healing this side of Heaven. We pray for wisdom for the doctors and skill for her team. We pray for insight into treatments and meds. We beg for peace on hard nights where the mama is doing the ugly cry. And He's been good, so good, to answer so many of those prayers. The child who was not supposed to live after a high possibility of still-birth will, Lord willing, turn two years old in just 2.5 months. She's survived a high-risk birth, conquered aspirating (choking), survived not one but two open heart bypass surgeries, and numerous other minor surgeries. She's worked hard to wean off her vent last year, and by this time last year was completely off the vent and breathing on her own. She's learned how to roll from side to side, kick us, fight us during lab draws with immense force, pull her IV's out, hold her head up, and is now working on learning to sit. And doctors said she'd have low mobility. We thought we were going to lose her when she coded on us on three separate occasions. We thought we were going to lose her right before her first heart surgery, during her surgery, and at the twelve-hour mark after her first heart surgery. We thought we were going to lose her after her second heart surgery. But this little dancer is SUCH a fighter and a teaser. She usually knocks us off our toes and surprises us. We all know we can't rest in that confidence, but she's done it enough that we all just shake our heads and say, "Because it's Chloe." We never really fully sigh and breathe freely around her, we just learn how to pace our breaths a little steadier at times. And we will not give up on her. As long as she is smiling and ornery and showing us she's a fighter, then we'll fight right along side her and continue to advocate for her and against statistics.

And we're hopeful. We know we need this "treatment" vs. "when to let her go" plan in our back pocket, but we also know that we if we spend whatever time we have with her, whether that is two more months, two more years, twelve more years, or more or less, that we must use that time well, with an anchor of hope. Because hope does not disappoint (Romans 5:5). Whether we have her here with us for years to come, or He calls her home sooner, we have a hope in Christ that is firmly established (Colossians 1:23) knowing that we will see our daughter again one day. Because we've placed our faith in a God that is good and that conquered death, the hope lies in the fact that no matter what happens, we will see her again one day and that this journey was worth it, for He works all things together for the good of those who love Him, who have been called according to His purpose (Romans 8:28). Will it be hard? Immensely. I can't even imagine and hope to not experience any of the effects of losing a child. But at the heart of it and the reality of it, God is still good.

So now, we lay that out there. The raw thoughts that have been on our hearts and minds in this last week. The worry that creates the pre-mature wrinkles in our foreheads, and grey hair in Alan's beard. The thoughts that keep us up at night lately and the reason I drink so much coffee. Random shout-out to Radina's. The vulnerable cry of the heart in the moments when we just don't know. This is the reality of the life that we live with a medically fragile child. Lauren Chandler says it best in her new book Steadfast Love, which is about the journey she's on with a husband who was diagnosed with a brain tumor, that, "As the Lord invites you to see and know His faithfulness in showing you steadfast love, I invite you to peer into places where I have seen and known Him to be so. I must confess, it's not always pretty. There have been tears, there have been wounds, there have been downright ugly cries, but too much is at stake to not be vulnerable with you," (Steadfast Love, pg. 20).

We have shared our story and journey with Chloe from the very beginning for the sole purpose of showing that He is good even in the storm, and in the hopes that you would taste and see that the Lord is good (Psalm 34:8) and place your trust in Him. We are not ashamed of the Gospel of Christ, and will continue to praise Him with every step of this winding road, be it through tears or laughter, joy or sorrow.

And for now, we continue on, through another week of getting littles well, all of them, in hopes of getting through next week's meetings and back home, under one roof, to our crazy-normal, to continue to keep on keeping on. Please pray for us as the week unfolds.

"What we choose to use as our anchor determines how well we will weather the seasons of life." Lauren Chandler, Steadfast Love

Finding the Balance

typewriter image courtesy Hayley Novak of Fire Fighters Family. for real, visit her blog. it's pretty much awesome.

It's been a crazy week. I type that, and then wonder just how many times I've started a post with that very line. So perhaps instead I should type this...

It's been a regular week around here. Chloe gave us scares and nervous moments, desatting oddly, running a fever the weekend before last that we all thought was a virus, then after three days thought was an infection. She was restless and less than thrilled to be touched or held. Come to think of it, I can't even remember the last time I truly held her...at least two weeks? Maybe a bit more? Just the soft touch of my rough mama hands gracing her flushed cheeks, or supporting her upper body so she could sit up for the few blissfully sweet moments that she wanted a change of scenery for before letting us know she was ready to cuddle up on her pillow again. Something was obviously working on her and taking her down, but we weren't sure what. And sometimes the hardest part of parenting is not knowing how to help comfort your child, or if your tiny attempt to, like wiping her warm forehead, is enough. 

Two ER visits in less than twenty-four hours, one early morning sunrise flight back to KC, and a ton of labs later, and we think we have a bit more info as to what the fever was all about. I think back to a few weeks ago when her brother begged for me to wake him early so that he could watch the sunrise. I did, then later found his other sister cuddled with him in the big office chair, watching the sun rise over the Flint Hills. I guess Chloe was mad that she missed out on that moment and demanded her turn to watch a beautiful sunrise with her friends, the flight crew. Her team agrees with us and is pretty sure she picked up a virus after one of her last appointments. This virus caused her to get sick enough to become dehydrated. The dehydration paired with all of her diuretics made her little body too dry. So we compensated by pulling most of her diuretics. But we over-compensated and that swung the pendulum the other way. She's now admitted and thankfully, praisefully (new word!), her kidney levels are coming down very nicely. Because of this, we're able to be more aggressive with getting her diuretics back on her. Her daddy has informed me that five bedside pokes, and three pokes under sedation later and we finally have a midline in her arm as of today to give her more IV diuretics because she's maxed on what she can receive via her g-tube. 

We're thankful. We're thankful that the team isn't freaked out, that her kidney is behaving well with others, very well actually, and that this is simply a case of the pendulum swinging too far one way, then the other. We're oddly thankful that it'll take a week, maybe two, to get this under control and find the new balance because in the meantime the mama and other two littles are home two hours away playing with germs call Cold, Cough, and possible Virus. We're hoping to all get better soon and the coughs to pack their bags so that we can all balance health with timing of Chloe getting discharged once her fluid balance is figured out again. 

It seems sometimes like there is so much balance that goes into raising a child like Chloe. There's this balance we try constantly to grab but is just within our grasp that we call "normal". The transition from pre-special needs child to with-special needs child is hard. It's give and take. It's trying new things. It's finding new balances. And often I feel as if there are moments, glimpses, like when I'm home alone with all three kiddos, no nurses or phone calls to the team, that we've found our normal again. There are tears when we realize today, or yesterday, or that day last week was so far from normal. There are unspoken moments, like watching as a family from our minivan as the ambulance drove past us in the ER parking lot to head to the airport with our sweet daughter/sister and the questions about Heaven that our four year old happened to ask at that very moment, balanced by a six year old's tantrum the minute we got home because he did not want to go back to sleep after that little 3 a.m. adventure, because his mind couldn't grasp why it was still dark outside but we all were awake. There's schooling the kids like nothing is different, in the quietness of our home without machines on while her daddy sits beside her at the hospital miles, towns away. 

Those, strangely, are the easy things to balance. 

The harder thing to balance is grief. 

Yes, grief. Here's a little insight:

It's there. It's always been there, since that ultrasound. We find it surreal, and we also find that people do not talk about it very often. Grief is usually associated with a person's passing, but not associated with a person still very much here with us. But we all have seasons of grief. Grieving a lost friendship. Grieving a distant family member. Grieving not getting into that college, or getting that job, or ending that engagement. I think Lady Mary did a ton of grieving on Downton over her many broken engagements and lost beaus. Sorry. I digress. Final season for Downton Abbey, so I guess I'm grieving that as well. The point is, there are seasons of unexpected grief in lives like ours, and it's always sneaking up, catching me off guard. 

The current season of grief is watching Chloe's peers running. One little foot in front of the other, with quick pitter-patter sounds. Even those babes born months after our daughter are walking. Taking their first precious milestone-get-the-camera-out steps. Don't get us wrong-we're overjoyed for those little ones who are about to give their parents an eviction notice on the honeymoon period known as pack-n-play or baby gates. These toddlers are toddling, walking, climbing. We're beyond and over the moon that these little ones are thriving and healthy. 

But Chloe can't sit up on her own yet. She's just starting to let the earth touch her feet with resistance. 

And the worst part about this grief of noticing one milestone not met after another? The guilt. I hate that I have grief instead of pure joy in the first place, but hate the guilt that goes with it just as much. There's a guilt that comes usually seconds after that grieving moment. I struggle greatly with the sin of jealousy and envy when I see toddlers these days. Last year it was a grief over seeing perfectly new babies, swaddled and sleeping on their mother's chest, or hearing of a perfect birth story where the baby wasn't swept away to a team of NICU nurses and therapists and surgeons. This year it's seeing a toddler run to their mother, be swept up in her arms and fling their own chubby arms around their neck to hug her. I'm waiting, ever so patiently and unpatiently for her to learn how to embrace me back. I still do not know what her hugs feel like. (New word again! The prefix un means not whereas the prefix im, as in impatient, simply implies I'm changing the meaning. I prefer the new word unpatiently, for I am certainly not patient on many occassions. Grammer lesson done.)

I know this is a season. My heart knows this is a season and it will pass, and that I need to fix my mind on the fact that she's still here. That she's met more in-depth milestones than most her age. Maybe she's not walking, but she's alive. Maybe she's not talking because of her trach, but she's survived two open heart surgeries. Perhaps she's not sitting up yet, but she's home. Well, except for this little dehydration-out-of-control moment. Her daddy is so great to look me in the eye and remind me to be thankful for all that she is, not what she isn't quite yet, and yet at that very same moment to allow me to grieve. 

So I'm on the balance beam these days. Our whole family is. We balance moments of grief with spurts of excitement and progress. We balance living for a few days or weeks in different zip codes. Different states for that matter. We balance playtime and normal down time with the older kids with schooling and trying to get slightly ahead on school for when spring-time cleft palate surgery gets scheduled. I balance rest and recovery from these germs with getting things done while I don't need to be in the same room as Chloe {when she's home, we can't leave the room//area unless there's a nurse or another adult around. Then again I have a legit reason why the laundry isn't done on days when I'm the nurse}. 

But even still, there is one thing that does not need to be balanced. And that is with my Lord. I'm so, so thankful and learning more each day that I'm not supposed to balance this with Him. I'm not supposed to "do my part", or "pick up the slack" or "pull my own weight" in life when He is in it. Because there's no balance, no scale to measure how much I do vs. what He does in my life. I can thankfully let Him lead. Let Him hold my tears. Let Him encourage me on the hard days and rejoice with me on the good. I'm not always the smoothest at letting Him have control, but I'm learning. 

The thought lately spinning around in my head is that this is His story that He is writing and I need to stop trying to edit it. And if part of that story is learning about a new kind of grief and acceptance, then I'll let His broad strokes wet the pages as I live it out. And I admit that I'm far from living it out perfectly. And even though I don't understand why, I'm learning to be so thankful that He's trusting us to live out this particular story, in hopes that 

somehow, 

in some way, 

it brings Him glory. 

"For You have delivered my soul from death, my eyes from tears, my feet from stumbling; I will walk before the Lord in the land of the living." Psalm 116:8-9

The Beautifully Mundane

It's Sunday morning. Kids are still in pjs. Chloe's still asleep. I'm wearing a bathrobe over the top I had on yesterday and knee high warm socks with capri yoga pants, one sock still pulled up to the knee, the other not so much. Stylin' I'm tellin' ya. Real fashionista here.

I'm on my second cup of coffee.

Conversation an hour ago:
"I gotta go waters!!"--Child #2 yelling through the bathroom door in an urgent voice.
"Hang on, I'm almost done!"--the Mama
"But I weally gotta go!"
"Do the potty dance!"
"I am alweady!"
"Then run around."
"But I'm getting dizzy!"
"Are you running in a circle?!"
"Yes!! I gotta go!"

I didn't tell her to run in a circle. I just said run around. She added the vertigo challenge herself.

Here's a snapshop of life as we know it...

Everything neat and tidy and in its rightful place. Not a speck of dust.

We sipped hot cocoa near the frost covered windows and ate dry cereal from measuring cups because all the bowls, and most of the cups, are dirty. Emphasis on neat and tidy around here.

It's been a long week, with Chloe have an odd virus that made her erp and have a rash, late night phone chats with her doctors, and finally her starting to feel better but leaving us with lack of sleep or motivation, but lots of motivation to sleep.

Last year, while we huddled together under His feathery wing in the rafters of our temporary KC home, I longed for the mundane. I longed for normal. And at the same time I had conversations with other mamas who longed to break free of the mundane because it was, well,...mundane. My heart was perplexed because while they longed for a break from the norm, it was all I craved.

Jump back to the now and my mundane includes giving fifteen plus meds a day, drawing up each dose delicately into the plastic syringe and double//double checking each dose. Mundane means daily trach care and suctioning. Mundane means filling the vent humidifier for the umpteenth time and scheduling feed breaks.

It's certainly not what I pictured our mundane life to be when we started having kids. I thought mundane meant cleaning up poop off the floor and wiping snotty noses and the same routine day in and day out. And I was excited for that mundane with our first child, and I was comfortable with the mundane, though a bit stir crazy, come our second child. And with our third, it was all I could dream of. To not have nurses around the clock in our home. To stake claim on our third child and not stand by and watch nurses changing her every diaper.

We're slowly weaning ourselves back into normal lives now that we're home. We're balancing work and school and groceries and budgets and chocolate. We're sipping coffee from our own percolator in our own favorite mugs {minus the one my hubs cracked and broke this week. I'm not bitter anymore. Not in the slightest. He'll replace it if he knows what's best for him}. We still have nurses, but only four days a week for eight hours a day. The rest of the time is ours. We're on our own timetable without rounds and florescent lit hallways and corridors to twist and wind through daily. And our own cozy passageways feel so much more calm and less sterile.

Much, much less sterile. 

And we're ok with that. 

I'm seeing on Everythingram people {and by people I mean mostly women//mothers} carefully hand selecting their word or verse or motto for the new year. Last year ours was a verse that laid the groundwork for every conversation and relationship we encountered. We failed it often. But we also embraced it and grew from it. This year I see people choosing their word of the year to be gratitude  or expect or embrace. "All good things, all good things," -Olaf. But honestly, if I were to be blunt, ours will probably be the word MUNDANE. We don't seek anything huge or spectacular or shiny or new or deep even. We just crave the mundane. 

A beautiful mundane, though, where we embrace the moments of our children. Soak up the game nights. Steal a kiss. Surprise with a hug and morning snuggles. Learn from the arguments. Teach through the tantrums. Admit the wrongdoings and seek forgiveness. Model the unperfect. Humble ourselves before our children. Humble ourselves before each other. Attempt the daily schedule. Learn to be OK with changed schedules. Set aside the strive for perfection and just. be. us. 

One of my favorite sayings is GROW WHERE YOU ARE PLANTED. So much depth to such a simple sentence. We're learning to grow right where God has us. Because this isn't our story. Let's be honest, we would probably not have ever in our wildest dreams when we were a new couple freshly married, thought that somewhere down the road we'd listen to steady beeps from a ventilator at night. We also probably wouldn't have believed we'd have two red-heads. But God knew. He's the one that planted us here. It's our job to trust Him in it and accept it and embrace it, or to drop it and not claim it as our own and live a life of running and misery and every other frustrating emotion we can muster up. We didn't choose this life. But we love it. We've had seasons where accepting all of this and setting aside our own dreams of what we thought things should look like have been challenging and hard and bitter to the taste. But we're learning to trust what His beautifully wounded hand is penning for us, even if the next chapter is simply to embrace the mundane. 

Because the mundane can be just as beautiful as any life we might have imagined. 

My Sunday morning gift from my daughter. An original hand-sketched drawing of lead on print paper. 

Happy New Year!

Happy New Year!

Hopeful new year?

Better new year?

Good riddance, 2015?

I find it interesting to see what people post or comment about the new year...how many say how blessed they were in 2015 vs. how many people say things like, "Well, 2015 was certainly not our year," kind of thing.

Well...if you think quickly on the G family's last year, we could easily say that. But each year has brought blessings alongside the hardship and trials. Although we've walked a hard road these last two years, there have been a scattered multitude of blessings and ways the Lord has been right beside us through it all. To write off 2015 as a bad year is to tell the Lord it wasn't worth it. And that's just not our style.

So here's our 2015 list of blessings & bests... {click on links to read original blog posts}

• God's provisions and protection.
• Chloe stayed home from the NICU for over 8 months!
• Blessings in ABUNDANCE from Chloe's Benefit!!!
• Chloe earned frequent flyer miles last summer and all trips were made safely.
• Safe travels back and forth a thousand times between our home sweet home and KC.
• Chloe survived her second heart surgery. 
• Chloe got to go to church with us twice, one of those being our family dedication for her and her sister.
• The kids LOVED the Ronald McDonald houses and considered it an adventure, not a bump in the road. We called it our summer vacation. 
• We didn't get lost in the woods. 
• We kept the momentum up through the unknown weeks of being away from home. 
• We watched from home plate seats as the Royals launched themselves into the world series, as a gift from the Ronald McDonald House. 
• Jodie discovered Instagram. She's pretty much in love with it. 
• Alan started seminary working on his masters and is loving it and doing great, and even took exams from Chloe's hospital room during his shifts as parent on duty. 
• Chloe didn't get any clots from this year's PICC during her stay!!
• Abi got to see Frozen on Ice.
• Our family got to see Cinderella live at the Star Light Theatre, outdoors, under the stars on a beautiful early fall night. The kids thought it was just a jumbo movie screen. 
• Isaac learned he loves math.
• Isaac learned to read.
• Abi started ballet classes online with her homeschool. She's perfecting her twirl. 
• Chloe has learned to chew on things.
• Chloe can sit up (assisted) without throwing up every time. 
• Chloe can hold her head up and reach for toys now. 
• Chloe has started losing her aversion to things in her mouth these last few days. Downside is she's trying to chew on her cords. 
• The kids got blessed by friends with a new swingset in our backyard this summer as their own private playground. 
• Visits from family.
• Extended family health prayers answered.
• Unexpected trip to Iowa to see family for the first time in over a year. 
• We learned how to off-road in a mini-van. 
• Chloe was OFF her ventilator for over 8 months during day and 4 months completely off 24/7! Huge praise as we know she's strong enough to do it again soon. 
• Chloe made the Wall Street Journal as well as Time Magazine Online via a post I wrote for a special needs blog. 
• Chloe came home for Christmas!!!

Yes, 2015 was a hard year (and the year before that as well), but from that small list, which left out a ton of other blessings, you can see how each year is important. The good and the bad. The good times and the trials. I think we're learning that blessings and trials go hand in hand. And that's a good lesson in and of itself. 

So here's to 2016. A new year. A fresh start. A new season for Chloe. I must admit, I cried the other day watching a 7 month old bear weight on her legs as she played in her mama's lap and I burst into tears because Chloe is almost 2 and not there yet. But immediately the Lord brought to mind this verse, "...they shall soar high on wings like eagles. They shall run and not be weary. They shall walk and not faint..." from Isaiah and I was immediately reminded that in her time, by His will, she'll get there. I've set this goal for her that I want her to bear weight or start to crawl by the end of the year, but my husband lovingly reminded me that we're to simply be thankful she's even here right now and to wait patiently for those things to come. So that's our approach for this year for Chloe and our family. To soak it up, one day at a time. One dance party on the living room floor at a time. One car ride for appointments at a time. One homeschool day around the family table at a time. 

Whatever it is that you've walked through last year, know that this year is a new year, a fresh start, and that although there might be trials along the way, there will be blessings as well. Just wait and see. 

Lessons From Mary: How To Not Freak Out

Christmas. Where it all began.

Two Christmases ago, and almost to the date of this post, our ultrasound didn't go as planned, and we learned I was carrying someone very unique, who many thought wouldn't make it.

I cried. Ok, sobbed. I was disillusioned, distracted, distraught. My mom was in visiting and took me shopping for maternity clothes to which I remember telling her that I didn't know how much longer I'd be pregnant so it wasn't really worth the new clothes.

I didn't exactly embrace this news well. We had our own dreams for this child. Our own plans. And they included a healthy baby, a simple delivery at our local hospital, and days on end spent cuddling with a newborn come spring while our then 2.5 year old would potty train herself as I would watch from the rocking chair, and our then four year old would teach himself to read. Because that's how it works when a new baby is welcomed home, right? Our lives would include school starting for our son, ballet classes for our daughter, and every perfect milestone met by our baby.

Until that ultrasound changed everything.

It's Advent again. Last year, our sweet Chloe was home for Christmas, and in a way, the Christmas season was redeemed for us a bit. This year, we longed for her to be home from her second open heart surgery in time for Christmas. And here we are, hanging out in the living room this morning, the kids snuggled in their tents that we let them sleep in last night with me while I was the night nurse in the front room by her crib. We're nestled by the tree this morning, the only lights in the room from Chloe's monitors, the Christmas tree, and the TV gently telling us the Christmas Story through youtube videos. The gifts are all wrapped under the tree. The stockings are ready. The anticipation is unbearable for our six and four year old kiddos, who are counting down the days on their red construction paper chain.

I was reading with my son the other day about when the angel appeared to Mary and told her she was going to bear a child who would be the Son of God. Her world was rocked, and I don't think slightly. So it was kind of like the world's first gender reveal party, only instead of balloons released from a closed cardboard box with guesses marked on the side, it was heralded by an angel, whose voice I can only imagine as pure and filled with joy and excitement and gentleness and anticipation, in a dialect that breathed Heaven.

And Mary cried. She sobbed. She was disillusioned, distracted, distraught. God had rocked her world and she was carrying someone very unique but it wasn't part of her plan. So she freaked out.

Nope.

That's how I reacted to Chloe. That's how many react to bad news or unexpected news. Mary, however, stayed focused, eyes fixed on the Lord, and simply replied, "Behold, I am the servant of the Lord; let it be to me according to Your Word." {Luke 1:38}. She knew Who was in control of her life, and she simply trusted in Him. That doesn't mean she wasn't afraid, but she didn't let fear overcome her {and I'm guessing in the days before epidurals that she probably was a little freaked about the whole birth the King part}.

I have so much to learn from Mary. She embraced this new journey with joy, thanksgiving, and obedience. She declared the Lord was her guide and that she'd do this for His glory.

We're only human. There are going to be moments when I wake up, stir for a moment in bed before my feet touch the floor {probably flipping through instagram first}, then sitting up to realize there is a ventilator whirring in my room. There are going to be moments of disappointment and frustration at my goals vs. the world, like PT saying she's not quite ready to bear weight on her legs yet after we thought we had made progress to this point. There are going to be days where I'm distracted and upset, and probably hormonal and most likely in need of copious amounts of coffee in order to make sense of it all, of the fact that we have two healthy children, one medically compromised child with a weakened heart, and one already in Heaven, who we won't know until then whether it was a boy or a girl. This isn't the family I thought our marriage would create. This wasn't our plan. And last year, my heart stayed cold in that season of bitterness and blame-placing, trying to figure out why He'd do this to us, but saying through gritted teeth that we'd do this for Him. I didn't embrace the thought that perhaps this, perhaps our lives raising Chloe, is what He wants for His glory. I didn't allow myself to grieve the child we thought we'd conceived. There's a lot of grief that goes along with having a special needs child, and we're just now learning that's OK. But that's a post for another day.

But here's the thing: This is the life He chose for our family. These are the people, our own little tribe, that He has lovingly placed in our care because for some odd reason He thinks us capable. We're learning during this chapter to embrace and remember the fact that when we each declared we'd live for the Lord, that it meant to lay down our lives, die to self, and life for Jesus and His glory. So who are we to say He messed this one up? That He didn't get this one right, this wasn't how it was supposed to be?

We're not. What we are called to do is be obedient to the calling He's placed upon us, to keep our eyes focused on Him during it, to remember that in this world there will be trouble, but to remember that He has overcome the world {John 16:33}. That He did this as a simple, rag-wrapped baby in a manger. That He became low, even to the point that His precious little newborn life was resting only inches away from the dirt and muck of a stable floor. And He did this for us. If He was willing to bow so low in order that we would be brought so high, then anything He throws at us or puts in our path should be worth it. It's taken me some time to get to that point, and in all my human-ness, I'm sure that any unexpected curves He throws us in the future will be met with fear, anxiety, and freak outs again. But the point is that we're choosing to not live there. Camp out there for a milli-moment perhaps, but then look up to Him and know He's got this. And that when things are good, that it's also OK to embrace the good and to feel blessed, being reminded that sometimes our Lord just plain likes to love on His people.

So this Christmas, we're embracing the fact that this is the story He's writing in our lives. This is the family He created. This is the calling that He's asked us to be obedient to with joy. It's hard, no doubt. But it's worth it. And even though it's not anything like what we imagined it would be {says the mom who now homeschools even though she was entirely convinced she never would}, we will be like Mary and sing, "My soul magnifies the Lord, and my spirit rejoices in God my Savior." {Luke 1:46}.

#chloehomeforchristmas

We're home.

Yes! We're HOME!!

 

I apologize for not updating, but it's been a whirlwind, and not the snowy kind with pretty white snow, but the "adjust back to daily schedule" kind. It's been good though. We've all much needed home, and sunken back into the coziness of our own beds, our daily routines, and our own dinners together at our very own table.

And then on our first Saturday home, I accidentally pulled out Chloe's GJ tube and we had to pack up all the kiddos and jump in the car to take her back on the two hour drive to have it placed again at the hospital. So we were almost home. Kind of. But all is well now.

We've adjusted sleep, and have Chloe in our room because she is now sleeping through the night and requiring less suctioning or needs at night. Our new routine is to take her up to our room around 8pm or just after night time meds are given. I carry her up with her travel ventilator strapped across me, and Alan follows behind with the vent stand, other vent, humidifier, then we both trade off running up and down the stairs to grab the suction machine, sat monitor, cords, meds, and essentials for the night. It's a tiny bit of chaos and a whole lot of peace knowing our daughter is right beside us all night long without the need of night nurses. Such a huge, HUGE prayer that has been answered. It's similar to having a newborn in that we wake up at odd times, either to suction or to assist a piece of equipment, like fill feed bag or water humidifier. Sure, there will be nights we won't get much sleep if she's restless, but even her restless nights (and she had three in a row when we got home) were still so much better than all of last year that we were home.

We've adjusted the kids' schedules and are back into a routine of greeting the day nurse, scarfing down breakfast, giving reminders that it's school time and not lego building time, and hugs and kisses for the Daddy as he ventures off to work, in his own office, with his own standing desk, and no more two hour commute and five days apart.

Kids do school work...

...and we cuddle. 

We've put up the Christmas tree, wrapped it in white lights, and sang hymns at the piano, all gathered around Daddy as he sings Christmas carols. We've opened a new book each night and read together, with Chloe curled up on our laps.

We're doing this. We're breathing a bit lighter and less constricted, though we're not out of the woods just yet. Our goal at home is to wean her off her oxygen and wean off ventilator again, and just continue to thrive and grow until the spring when we hope to begin the process of fixing her cleft palate and lip. Growing and thriving includes PT and OT coming to our home, daily PT and OT with me or the nurse or Alan helping. The oddest thing is that she graduated from the CHAMPS (heart home monitoring program from Children's Mercy) program, certificate and all, so we are no longer required to weigh her daily or weigh every single diaper since we have from her birth. Feel so, so weird to just throw a diaper away and not put it on a scale first, then enter it into the app for CHAMPS on the tablet they'd provided so they can see instantly how many grams that last poop was. For real: This is NEW territory for us. And scary. I find myself wanting to weigh them to know her output. 

Chloe showing off her certificate and also watching her first Tinkerbell on the big TV. She loved it. Till she fell asleep. 

And most of all, we're thankful for each and every one of you who prayed us home and loved on us through quarantine. Your encouragement means the world to us and to Chloe. 

From our family to yours, Merry Christmas. 

#chloehomeforchristmas