Friday, July 31, 2015

Tight rope

I've loosed on my rigid coffee/tea schedule these days because if mama doesn't get her dark black cup of coffee bean juice every morning, she feels as though the world may actually end. Nights are hit or miss with our big man these days. I'm not sure why some evenings are harder than others, but I think that's just the nature of parenting (and life for that matter). When your little one says, "mommy/daddy, please don't leave me," you realize they are dealing with their own bag of growing pains just like you, and it's not fair to punish them for it or expect them to be someone they are not. How is it that you can want to strangle your toddler one minute, and then when they greet you cheerily as the sun rises and say, "good morning mommy. I love you," you forget every frustration they ever caused.
Motherhood truly seems to invoke a sort of bi-polar disorder in and of itself. I've always hated extremes, but it feels as if my days are consistently teetering on a tight-rope of sweet melodious hymns and thorn suffocating blisters. One minute I'm sitting back enjoying the peaceful moments when both of my boys are learning and growing at their individual stages of development, while ten minutes later both are screaming bloody murder, and I can't seem to soothe either one. I know that much of this is simply the growing patience needed to become a living, breathing parent, but here's where I'm struggling and honestly crying to God for wisdom:
With a "normal" or non-special-needs baby (I still can't get over the fact that Levi is considered "special needs" right now), there is always that "purple crying period" where you just have to let them cry it out with the door shut because you know there's no other way to help them. They are fed, dry, and comfortable, so just turn on the vacuum because they just have to learn to self-soothe. Then there's my little Levi. Yesterday I watched him with tears in my eyes because he so badly wants to soothe himself by nursing on something, but every time anything gets near his mouth for more than a second he gags and chokes. It's truly painful to watch because most hungry children can at least feel soothed through eating even before the food hits there bellies. But Levi's food is pumping into his stomach manually, and he doesn't feel it for at least fifteen minutes. Thus, he relentlessly chokes himself trying to find satisfaction. I can't walk away, turn on the vacuum, or shut a door. I have to watch this mellow-drama unfold until he's finally filled or too tired to try any more because one abnormal choke could ignite CPR. No matter what I try to do, he ends up gagging either due to my efforts or his own. The only thing I can think is that God is continuously preparing me for those years when my children make choices that not only hurt me, but also themselves, so I must sit back and pray silently that it will pass quickly and the wisdom gained will outweigh the pain. Let's face it, we cannot shelter our loved ones from pain. There is pain in the world, so we must see each prick as momentary against a life lived for eternity. Only then do we humbly realize we don't have the perfect equation for creating flawless life.

As such, I continue to wait patiently to see how Levi's story unfolds. Each doctor seems to punt my questions to a different medical professional, but ultimately whether or not Levi will learn to eat by mouth, use his right hand, straighten his toes, get off meds, or sleep in his own room is up to him and God. So I will keep on trucking with so much gratitude that my heart could burst. I can't keep planning for tomorrow, or I will definitely miss out on those sweet moments today.

One of my favorite moments last week was watching Silas' love of learning.

Those peaceful moments when your children sleep quietly together is blissful!

Silas was so happy that one of his best friends was back in town!

I love you Evie, and I need a haircut. :)

~Coffee CubBuster

Monday, July 27, 2015

Our importance

Everyone has an innate desire to feel loved and needed. I don't think anyone would argue with that fact. Deep down it's how we were created. When we feel unloved or unimportant, that's when we begin to feel worthless and lifeless. I think our ever-growing use of the exclamation point via electronic communication pinpoints our desire to make everything and everyone feel important. I had students who thought it was appropriate to put this end marker after almost every sentence because they felt it was an "important sentence," instead of using it as it's intended: to exclaim with gusto!

It is easier to feel like your life matters when you are doing something that the world views as important. A military post, missionary role, or mega million-dollar investor all fall into the category of important positions. People pour their lives into different titles and achievements in order to feel important, but when your life's work isn't glamorous, envied, or admired it's easy to forget your importance. I don't think the desire to feel important is wrong. I think God made us that way because He wants us to know His importance lies within us. He wants to satisfy our every desire. However, the day-to-day grind of an "average" existence can slowly wear down your definition of important. For that reason, turmoil, hardship, or even bumps along your "planned route" begin to feel like infinite blessings because they reroute your focus. You remember the importance and significance of every little moment in your day. You become aware of the truly important matters of life, and trust that your life has a greater purpose. You praise God for making you capable of reaching new heights that you would never have known prior to that mountain or valley. Trials really become precious gifts. 

Instead of seeing my new routine as heavy or hard, I will choose to see the significance in my ability to care for my children, meet new faces at doctors offices, emergency rooms, and therapy clinics, and I will thank God for each new day I'm given.

It's amazing how a new lifestyle changes your outlook...

I would count our weekend as a great one! Even though we functioned on fewer sleep cycles, ended up at the ER after Levi's G-tube came out (I was proud of myself for putting it back in correctly, the doc just wanted to double check since it is so fresh), and we didn't do anything really exciting except watch a rented flick. But it really felt like a great weekend. Our routine seems a bit more manageable, and we'll eventually figure out what Levi's future looks like. All we can see now is today, so today we'll thank God for another day.

Friday, July 24, 2015

Barriers

When we set up barriers in our lives, it's usually in an effort to keep from feeling something. Currently, Levi has so many uncontrollable barriers set up that it frustrates our ability to connect and really feel like a normal mother and son. His splints, cords, and attached technology make it difficult to simply carry him around like a newborn babe, and my natural maternal guilt causes an unwanted detachment from him. Thankfully, I have become more comfortable disconnecting and disassembling him at various moments, with the approval of his pediatrician, and allowing myself more opportunities to trust my instincts and love on my little one without all the barriers. I know that others have walked in my shoes before, and I know it's possible to live a semi-normal (albeit tired) life with Silas and Levi right now, but I think the uncertainty of Levi's future keeps us all a little more tense. If we just let go of the protective barriers and realize that none of our children's lives, let alone our own, is certain, we begin to adjust to a purposeful life filled with hiccups and surprises. While some barriers are beneficial- those that protect Levi's immune system for example, others simply wedge a gap between ourselves and the goodness God has placed all around us. Likewise, such barriers hinder our ability to really find joy in the present life God has given us. I think that's why many people guard themselves against God all together. They fear life might sting, or worse become all about rules. Rather, there's freedom in being able to bare all before the Creator when your life does expectantly ends. It's worth at least letting go of a few walls in order to see the magnificent view on the other side.

Be warned... there are no barriers in our basement because apparently there's no gravity!

Spaceship building is always fun during paternity leave!

With Matthew back to work, God continues to show me that the impossible is truly possible with Him. While I may have to continue to ask for favors, let go of a few maintenance rituals, and set my goal/task expectations a bit lower, I am seeing that day by day, I will figure this whole thing out. I mean going to the grocery store today with both boys by myself really wasn't any different from other moms with two kids under two, except that I tagged along a pulse ox monitor, doctor's file folder, replacement g-tube kit, and travel oxygen tank. But really that's not all that much considering. :)

Matthew and Silas two years ago.
Silas and Levi today.... it's all worth it because life really is just a breath.
~Barrier Buster

Monday, July 20, 2015

The good, the bad, and the ugly

I'm not sure why there's an expression, "the ugly truth." Isn't the really "ugly" stuff actually the most beautiful because it's the most real, the most honest, the most true? Well, I'm not talking about when someone who hasn't slept much in three days (you're looking at her), asks her husband whether he still thinks she's beautiful. No, that's just sweet fibs. I'm talking about those thoughts and feelings that we all have, but many of us don't want to admit them. Well, here's some good truth, some bad truth, and some ugly truth for you today. Because in the end, there's only truth.

Good- Levi's eyes turned brown! That's a normal milestone!
Bad- Silas has regressed in almost every area of life that he ever grew in before Levi was born.
Ugly- Levi's button site looks red again so we are headed back to GI for a consult this afternoon.

Good- Having Mathew home has been the biggest blessing I could imagine.
Bad- With Silas not sleeping along with two hour tube feedings, we are exhausted.
Ugly- Levi is not like a normal newborn, and there are so many cords attached to him and so many medical issues that we feel chained stay in the same room with him making life all the harder with Silas.

Good- We are starting to figure out a good med and milk schedule, and forced outings have proven to be successful! Plus, Levi hasn't needed oxygen since we've been home!
Bad- Our espresso maker broke!
Ugly- Here's some of my thoughts yesterday during an ugly truth moment-

I feel like I am gripping the side of a sky skraper balcony hanging on for dear life and each time someone or something tries to push a single finger, I scream. My exhaustion and fear have blended to create a sort of anger that feels displaced. I don't know why I'm angry, but with every two-year old tantrum, monitor mis-alarm, potty accident, or tangled cord, I snap with frustration. There's really no reason to be angry, which makes it all worse. I don't have a person to blame, but I yield to the fear and exhaustion. I think it's all related to fear. Fear I'll never get more than a wink of shut eye again. Fear that someone or something else will raise my son because I can't find the time. I am afraid I'll run out of time for my priorities. No time to spend with God. No time to spend with my husband. No time to be the creative and devoted mother and wife I want to be. I'm afraid I'll spend all my time doing rather than being. I'm afraid I'll lose sight of God's grace. I don't think there's anyone who can fix these fears because I don't want others living with us or taking my children away. I want to be the super mom I hear about in books and articles I want to be able to show peace and patience that only comes from God's presence. So I sit back, sip my coffee, breathe, and takes steps towards tomorrow. 

The Good- Today has been so much better than yesterday that I have hope again that I won't lose myself to fear.
The Bad- My husband can't live at home with us forever.
The Ugly- My hair these days.

As I remember Psalm 34:4 "I sought the Lord and He delivered me from all my fears." I know somehow we will keep going and make it through this.

I hope no matter what truth you are looking at, you know that God's truth will set you free from all fear!

God bless our double stroller/pack mule.
Levi's first visit to Silas' favorite park.
Levi's first out-patient therapy appointment!
~Ugly Buster

Friday, July 17, 2015

He's HERE!

Somehow it happened. Through the fog of yesterday, we arrived home after sitting in 5:00 Atlanta traffic! There's been such a delicate balance of rushing to get Levi where he needs to be, but responding with slow and steady gentleness. While we are exhausted running on just a couple hours of sleep (his monitor went off throughout the night whenever he moved along with changing out feedings every two hours, and finally having the monitor die at 5 am), but Silas slept through the night, which was an absolute gift from God!

With measuring meds, figuring out how to balance two kids at home when one could stop breathing at any moment, and scheduling follow-up appointments, one would think I'd be checking into a home myself, yet surreal joy encompasses our uncertainty. And because God has delivered us from so much already, we know he'll continue to provide us with the stamina and wherewithal to continue. I think my favorite part of the past 24 hours has been watching Silas sweetly talk to Levi, and Levi looking at every single thing in our house as if it's a spaceship!  He's so much more aware than a normal newborn would be, but he hasn't had the pleasure of experiencing anything but a hospital room these past four plus months. It's truly amazing!

Your prayers  and support have continued to encourage us and have given us the opportunity to make it to today! Thank you from the bottom of our hearts!

If you'd like to keep praying, please pray for Levi's continued health and development. I know that encompasses a lot, but there are a lot of uncertainties with his care, and it feels as if things are already falling through multiple cracks as I'm his primary EVERYTHING! I know there are multiple reasons we could be in and out of hospitals the next several years, so I will try to enjoy every minute at home. Also, please pray for Silas as he occasionally asks to go do something with just "mommy and daddy." :) (sorry bud, Levi isn't quite old enough to stay home alone.)
Finally, please pray for Matthew and I to continue in wisdom and strength through this unknown and tiresome journey. May we keep our eyes on God, give grace when weary, and stay connected as a family.

We love you dearly!

Katie, Matthew, Silas, and LEVI!

~CC

Wednesday, July 15, 2015

quick update

It's looking like Levi will be coming home tomorrow afternoon! While I'm not going to do a dance until he's in the back of our car, we are making detailed preparations for a discharge tomorrow.

They have decided to send Levi home on an one-eighth of an oxygen tank, which we can use on an "as needed" basis along with two more meds (diuretics) to help with his fluid retention (one of which is apparently on a nationwide shortage, so I'll have to crush up my own pills to push through his tube since they don't have the liquid form!).   Man I think I'm ready to be a pharmacist, therapist, and nurse now.

While there is a lot of juggling involved with discharge, we are grateful to have everything we need in place right now, and I think it will be a blessing to have the oxygen for those "scary" moments at home.

We still have quite a journey ahead of us, and I'll try to update whenever possible, but know that we are beyond grateful for all your love and prayers!  God is good, and He continues to see us through all of life's ups and downs that are surely to come.


God bless, The Smiths- future party of four.

~CC

Monday, July 13, 2015

Adoption

Levi's First package. A kit for us to use in case his G-tube comes out.... hmmm I think he'd rather have some new socks, and I'm pretty sure we'll just take him to the doctor for that procedure.

Sweet boy sleeping soundly at CHOA.

Got it put up in his new changing station/closet.
The sign was hung, the house was cleaned, and I started packing his clothes at Scottish Rite to bring him home! Then his nurse walked in and said, "So..... he didn't have a very good night. The doctor wanted to talk to you because I don't think he's going to let him go home today." I doubt the sweet nurse new that she had just taken my insides and jarred them to pieces.

We've been praying for God to bring Levi home in His perfect timing, so I had to assume that it just wasn't perfect yet. Although, the longer we wait to bring our baby home, the harder it feels like it will be when he gets here. Matthew and I haven't seriously talked about adopting a child yet, but I can now imagine part of that journey. The waiting, getting to know your child from afar, and hoping and praying they'll miraculously meld into the lifestyle of your family is an emotional obstacle course no heart can anticipate. When a child dangles a treat in front of a dog and continuously snatches it away, the dog eventually gives up and decides that the treat isn't worth the effort. When that treat is more than a snack, when the treat is your child that you love dearly, you don't know how to stop your efforts even though your heart and soul are asking for a break. That's when you sit back, breathe deeply, and let the Holy Spirit revive your efforts for you. After all, God keeps seeking to adopt each one of us into his eternal home, even when we continuously walk away from Him. 

After a deep, hard power nap yesterday, we awoke revived and thanked God for more blessings than we could count. Who knows what God has in store for our lives. We are only guaranteed today, so we put one foot in front of the other and trust that we can't see the future, but to God a day is like a thousand years and a thousand years like a single day, so why not wait and see what the next day brings.

We would love your prayers-
  • Levi had several "spells" (as CHOA calls them) where he needed an additional boost of oxygen Saturday night. The doc thinks it's due to fluid retention around his lungs. We all retain fluid after surgery to some degree, but just like cold and flu season could land us back in the hospital with Levi' immature lungs, surgery has also proven to be a set back for him. 
  • Doctors want to watch Levi at least through Wednesday to decide whether to send us home on a diuretic (forces him to get rid of fluid) and oxygen in case he has issues at home. As long as Levi's weight comes down (that's how they know he has fluid because he gained so much weight so quickly) and little to no "spells", then we are looking to bring him home Thursday or Friday. 
  • Please pray that we continue to remain flexible and God-trusting with our unpredictable little Levi (and Silas for that matter) :)
  • Please pray that we take "every thought captive" so that we can be light to a dark world and for many hurting families at CHOA.
  • Please pray that Levi comes home in God's perfect timing (not ours). 

May God bless you and keep you and yours.

~Adopted Buster

Thursday, July 9, 2015

Family

 The beginning of any new adventure always elicits feelings of confounded concern. Whether it's the first day of college or the first time you take your newborn out of the house, there's a genuine question of whether or not you'll succeed or flounder. I reminisced with these emotions the past couple of days during our technological training and bedside "lock-in" with Levi. Every mom feels like a "crazy bag lady" throughout her career, but this feels like a whole new kind of juggling; instead of balls and bags, it's like I am tossing baby chicks in the air. There's just a whole new set of rules, and a whole new set of equipment that I never imagined I'd be handling. However, I continue to see God's provision for our emotional and physical needs moment by moment, and he's given us so many "family" members to love and encourage us along the way.

I didn't grow up with a "church family," so the idea of going to a large congregation, let alone a Baptist one wasn't my ideal situation. I don't care about denomination or size, but I do care about my relationship with Jesus, and our church has done such an amazing job of showing us exactly that kind of relationship; they have loved and served us as if we've always been in each others lives, and I think that's exactly why Christ came, so we could see how to have a personal relationship with a big God.
Moreover, God has blessed us with quite an extended family across the country. Not everyone knows what to say right now because they aren't sure what we need or how to empathize, but it's beautiful to see how our family has loved us in exactly their own perfect way. Schedules have been changed, gifts have been sent, calls have made, our house cleaned, our yard cut, our hearts loved. When I sit back and think about all the love we've witnessed these past four months, I can't help but believe there's nothing too difficult for us with the help of God's loving arms holding us through our loving families.

Man... what an exceptional looking family I belong to.
Hi mommy
What are you guys doing here during my midnight feeding?
Learning to suck on my pacifier and still breathe!
This has been like a Christmas morning activity. Instead of wrapping paper, old toys wrapped in new ice!

PRAISES!
- Levi's infection is getting better!
- Levi is scheudled to come home Monday if all goes well!
- Levi is learning to suck on his pacifier!
-Levi is still doing well with his g-tube fundo feedings!

PRAYERS!
- Levi's infection around g-tube to clear up before discharge.
- Levi's ability to eat by mouth. (A miracle that would be amazing!)
- Our transition to bring Levi home. He still coughs and chokes a bit, but he recovers on his own which is great, but the Apnea alarm he will have on him is insanely loud, so I imagine Silas will be up crying when Levi is struggling at the same time. Prayers he'll get better and not have many episodes at home. 
- Silas has stopped sleeping through the night since he met Levi. We aren't sure why, but he seems scared at night. We are getting exhausted. Prayers for our big man and our peace.
- Our ability to be mobile with a child that has so many special needs and special equipment, along with all the coordination of his physical, mental, and developmental rehab.
-There are so many children at CHOA with so many situations much worse than our own. Please pray for these special families and strength to endure.

Thank you for your love family. We love you!

~Family Buster 

Tuesday, July 7, 2015

Plans ?

I'm not sure why I limit God. Maybe because our generation is great at making up our own plans that pick and choose the method based on our own hedonistic values. We have the privilege and freedom to choose an a la cart menu of religions, politics, careers, and lifestyles that don't have to follow any particular rules. If you know anything about postmodernism, you know that our current society thrives on creating a sense of limitless truths that encompass any and every mode of thinking without actually believing anything. Without getting too philosophical, let me just say that once again, since Adam and Eve, I think we are just trying to "play God" again. I don't think we give the Creator of the universe enough credit. Many believe the Bible is outdated, and more of a nice rule-based value system than anything else. Based on the history within this book of faith, I would beg to differ.

I recently read a devotional that captured the creativity and power that our God possesses, which we continuously forget. In the Book of Exodus, the Israelites were pretty upset with Moses:
"As Pharaoh approached, the Israelites looked up, and there were the Egyptians, marching after them. They were terrified and cried out to the Lord. They said to Moses, “Was it because there were no graves in Egypt that you brought us to the desert to die? What have you done to us by bringing us out of Egypt? Didn’t we say to you in Egypt, ‘Leave us alone; let us serve the Egyptians’? It would have been better for us to serve the Egyptians than to die in the desert!”
Moses answered the people, “Do not be afraid. Stand firm and you will see the deliverance the Lord will bring you today. The Egyptians you see today you will never see again. The Lord will fight for you; you need only to be still.”

Most people know that this is where the parting of the red sea occurred. I have to admit though, I think if I lived during this time, and I followed Moses out of Egypt and stood between an army and an ocean, I'd think it was a "rock and hard place" kind of moment. When we see a mountain before us and a fire behind us, we are always quick to question why God is missing; when plan A and plan B both fail, why don't we trust that God had a totally different plan altogether? It's simply hard to imagine how you will deal with something that is seemingly impossible to the naked eye and the rational thought, but keep on trusting that there is a more creative, out-of-the-box thinker than yourself that is actually the driving force in this world. Don't limit Him because he is without limits.


The wagon we grabbed at CHOA was such a sweet moment. Look who it's in honor of!?

Our little man is still off of oxygen!

We were blessed with a first time meeting between our boys. Silas and Levi both did amazing!

For the Fourth we were finally a family of four!

Celebrated the fourth with some old-school blueberry picking.







Watch this progression of firework viewing... (first there was fear)

concern

interest

awe

enjoyment

PRAISE-
We are all taking steps to get Levi home! They are thinking in the next 5-10 days!
He is still off of oxygen!
He is tolerating his new feeds via his g-tube and the fundo has kept him from spitting up!
Our boys got to meet and I would have cried tears of joy had I not wanted either child to witness it.

PRAYERS NEEDED-
Levi may have an infection around the g-tube site. He's pretty uncomfortable. He's on antibiotics now, but it may lengthen his hospital stay until it's under control.
Levi still de-sats some (hold his breath), so please pray this in infrequent when he comes home (if at all).
Matthew and I have to "room-in" at CHOA tomorrow for 8 hours so the nurses and doctors can watch us care for our child. We have a lot to learn in a little bit of time. 
We have so many different appointments that have to occur with Levi in the coming months. Please pray for our ability to schedule all of these, and for Levi to have the right therapists and doctors treating him either at home or in clinics. He hasn't had much therapy this last week because of the surgery and holiday. Pray that he doesn't take steps backwards.
Pray that Levi comes home at just the right time, and we all adjust well to the changes.

Thank you so very very much for your constant love!

~Plan Buster

Thursday, July 2, 2015

Disney of Atlanta

 Most people expect to take a vacation during the summer months. Whether its a beach getaway or a trip overseas, every hard-working adult has come to expect this time of respite. I even remember being asked, "where did you go or what did you do over the summer?" the first day of elementary school. Well, this year Matthew, Silas and I would probably announce our trip to Scottish Rite at Children's Health Care. It's the Disney World of Atlanta (at least for Silas). Maybe it's just because Northside wasn't really geared towards kids, but CHOA is an unbelievable place to take a two-year old. Silas couldn't wait to go back this morning;  we had to drag him away from the train station, library, playground, fish tank and interactive board. That said, we are missing the Northside NICU a lot. I'm sure the care teams at CHOA are great, but right now, they just don't compare to the men and women who became like surrogates to our little Levi. No more private room, no more special treatment, and no more sweet motherly touch. Hopefully we won't be at this NICU for another four months though, so I'll take it!
Levi did exceptional with the transfer yesterday, so thank you all for your prayers! I found myself a bit panicked Wednesday night. It was like the anxiety I felt the day before my first day teaching high school students. Nervous, anxious, excited fear. Then, walking the halls of a new major Children's hospital, I realized the difficulties and the hardships people face watching their small children deal with major terminal illnesses. I breathed deep and reflected much on the eternal blessings I carry daily. Not everyone feels comfortable talking about such deep facts of life, especially during a vacation-driven holiday weekend, but it's not sad for me to think about all these children and babies fighting to live because children don't look at the world like we do. They don't think they are missing out on a beach getaway; they are laughing and playing in their own Atlanta Disney World. They truly get how we are suppose to live... way more than we do... and it's that infectious attitude I hope to take home.

Our big man was exhausted in between Disney Days

Our Little man earlier today before surgery

Thank you for praying for our Levi during surgery today. I felt peace all morning up until the moment they called to ask if I had any last minute questions. When the doctor and nurse said that they'd "take good care of him." I lost it. I somehow flooded with the emotion of giving my child away to strangers to be surgically dissected. Then, we prayed, hugged, and continued to choose to trust. We are so blessed!  As I type, my little boy is getting a cool G button in his tummy, and having his stomach wrapped around his esophagus (all of which should help him get better and better).

We will let you know how surgery and recovery goes. Thank you for prayers and love!

~Disney Buster