Thursday, May 28, 2015

Humble Comfort

It's funny how humans are such creatures of habit. We all know it. Take seating for instance: even if there aren't assigned seats, on day two of class, most people will sit in the same seat or same seating section as the day before. Do you sit in the same area at church? Dinner table? Or take toddlers as another example: once they have a semi-established routine, their feathers get pretty rustled when forced to adapt that routine (unless it involves cookies, ice cream, or the like.)

Likewise, even during an undesired life change, we quickly establish a new routine and get quite comfy, quiet quickly. I believe it all stems from our desire to control our own lives. If we have even the smallest grasp of future outcomes, we feel a bit more at ease with the present. Also, believing that we can predict our future to some degree puffs up our own pride feathers (whether we admit it or not). Recognizing that our perceived control is merely a mirage enables us to open our eyes to the definition of faith and humbles us enough to give others grace. Proverbs 27:1 says, "Do not boast about tomorrow, for you do not know what a day may bring." After you've been married, it's easier to think you have "marriage advice" to give. After you've hand babies, you subconsciously think you understand all newborns. Once you've made it through your children's teenage years, you think you can tackle the world. Once you've cared for someone with cancer, you may feel like you have a better grip on tragedy than someone who has not. While experience is certainly a wonderful teacher, I'm learning that humility should be my preferred goal. Even though this trek has felt long and hard at times, I still have so very much to learn. I have no idea what tomorrow will bring, what it will be like to bring Levi home, or what hardships we may or may not face 5, 10, or 20 years from now. I'm sure none of this is new to anyone, but it's my own humble revelation that I don't want to forget when life becomes a bit more routine again. 

The past few days Levi has begun to act like a "term" baby! It's been amazing to praise God for every answered prayer! He's opened his eyes both times I've come to visit "hearing me" and showing me all that he's trying to learn. He's maintained great stats, tries to swallow without holding his breath, spit up on me and cried loudly immediately following that reflux (I've never been so happy to be spit on or cried at)! Its like he's starting to turn a corner. Since we don't know what tomorrow holds, we will praise God for today and say thank you for continuing to pray for our family!

Prayers and Praises below...


Woa! So you are my mommy!?

 

 
Praise! 
- Levi weighed 6 lbs 8 ounces last night!
 - Levi's heart echo came back clear, and that tiny PDA (hold in his heart from birth has almost entirely closed up on its own)
- Levi is clearly trying to swallow on his own even if it's hard
- Levi's neck strength looks to be improving!

Prayers-
- The ENT will come evaluate Levi at the beginning of next week
- The blood work results regarding some common muscular disorders should be back next week
- Levi's reflux and ability to swallow
- Levi's ability to continue to ween slowly off of oxygen
- Levi's future feeding capabilities
- Levi's continued hand and foot therapy


Thank you so so much!
~Comfy Buster


Monday, May 25, 2015

Memorial Staycation

I don't think I've ever stayed in Atlanta for Memorial Day or any of the warm weather holidays. We are always with family at the beach or lake. It is kind of strange how quiet it feels here, but amazing at how little traffic there is too! It's been one of the best staycations I've ever had!

Prayers were answered- rest for our family: a togetherness that only hardship could create. Laughter chasing Silas around the house, and even laughing at 2 am because Silas wet the bed when we realized Matthew decided to put him in pajamas without any pull ups! Camando is a side effect too much fun.... picnics in the parks, live music, dancing, and a special father and son trip to Lego Land while mommy got to be with her newborn at Northside! Moreover, Levi's doctor gave him a break this weekend. He remained on the same level of 6 on the oxygen "high flow." He got his two month vaccines though, so we were glad he had a break oxygen-wise in order to withstand the vaccine side effect. Also, one of the night nurses heard him "hooping and hollering" so loud that she thought it was coming from another floor. She said she highly doubts he has vocal cord issues! While we continue to wait on blood test results, a heart echo test tomorrow, and an ENT visit later in the week, we are just thanking God for such a great stretch of goodness! There's something about going through the tough stuff that truly makes life's simple moments unbelievable memories.


Lego Land apparently has one size 3D glasses fits all!

Little man's temp went up a bit after the vaccines, so they opened up his bed and he had nothing but a t-shirt on :)

Blowing all of you kisses.


 Please continue to pray for Levi's blood test results, heart echo (standard blood pressure check after remaining on oxygen for so long), weening off oxygen, ability to swallow, ENT eval later in the week, continued strength and muscle growth.

Levi is 6 lbs 6 oz! He's beautiful, growing, and nearing his supposed due date this coming Saturday! He's got a long way to go, but we are hopeful and trusting God with his life!

We are truly grateful for everyone who has taken time away from their own family and friends to serve our country! God bless you!

~CC

Thursday, May 21, 2015

Influenced

influence....... influenced. The latter word signifies a condition where someone else has an effect on your life. Taking off one little letter seems to insight a condition where you are the one acting upon the lives of others. I wish I could claim that I am rarely influenced by the opinions of others, but sadly that is not the case. If it does not go against my beliefs, principles, or well-being, I am one of those people that can easily jump on a bandwagon if presented with the material in an intelligent and legitimate manner. For that reason, I stay away from most things that can have a potential momentary or negative influence on my life.
Unfortunately when it comes to little Levi, there are many different people taking care of him, and there are many different opinions regarding his current and future condition. For some reason, since the day Levi was born though, I have not searched the internet for a single thing regarding his care or condition. I believe God has protected me from additional opinions and information that I do not need to consume. There are enough people speaking medical jargon and personal experiences into my ears that I really don't need to add to the equation.  We are once again in a holding pattern, but this time, I'm grateful for the standstill.

The neurologist stated that there was nothing out of the ordinary in Levi's MRI; however, he believes that there is something "going on" with him. He has begun the "non-invasive" route of blood and urine tests to check for common nervous system and muscular disorders. I've heard from a couple different people that Levi may be gaining weight (up to 6 pounds now!), but his muscle tone is very low. My first thought was, "I've never seen a ripped baby! What muscles are you looking for?" But the muscles they'd like to see get stronger involve his swallowing and other upper body movements.  However, there are others who have worked with Levi who disagree slightly with this analysis as he lifts and repositions his own head consistently and appears to be swallowing his own saliva at different points.
The doctor said we have to wait two weeks for the blood test, and if it comes back clear, then they will begin more invasive surgeries like a muscle biopsy. They don't want to tell me any specific disorders until they can actually diagnose him, but I'm told many of the muscular disorders seen in infants have no cure or correction. I was also told that there is a good chance Levi will go home on a more permanent feeding tube and maybe even a little oxygen. If tests continue to come back normal (as they have so far), then it's my impression they will continue with further testing. :(

My heart is breaking as I imagine Levi undergoing more tests, probes, and surgeries. I admit my thoughts have begun to unravel again.... at what point do we get second opinions? third? At what point do we stop testing? At what point do we take home a baby who may or may not thrive in this life?
For this reason I praise God all the more for creating my husband because I have a leader for our family to make the final decisions. I pray for him daily, and trust that God will speak through Matthew if I give him the opportunity to lead.
I've been in a similar place before where I didn't know what road to take for a very significant life decision, and there was no shortage of opinions on the path I should take. Although at that point, I wasn't married to Matthew. I struggled and struggled to hear God's voice among the noise of other voices, but I learned so very much. 1 John 5:14-15 :  "This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. And if we know that he hears us—whatever we ask—we know that we have what we asked of him."  In other words, if we want God's will, then it will be done. No worries or stress. It's already done. Takes the pressure off of decision-making. Pray, act, and you will know.

Thank you for praying for our family as we try to hear God's comforting words above all else. 

Praises: 
~Levi has two weeks to grow strong before the blood test results and possible future testing
~Levi is 6 pounds and quickly outgrowing preemie clothes- His actual due date was May 30!
~Levi has had a couple of good days with hardly any "episodes"
~We are the parents of two precious lives

Prayers: 
~Levi went up to a 6 on the high flow because he was having too many episodes a few days ago
~That they would let Levi rest a bit and not push him too hard to get off oxygen too soon
~Levi is back on secretion medicine, prayers this will help not hurt him this time
~How to make medical decisions when presented with the opportunities
~Praying for a miracle that Levi won't need further tests and will simply heal and grow strong without any more issues
~Rest for our family. With Silas cutting more molars and wanting to sleep in our bed, and me still pumping my dairy-free milk around the clock, we are sleepy.

 We are truly humbled by your love!

~Influential Buster

Tuesday, May 19, 2015

Smile

So much can change in an hour, a day, a week. If you love or even hate your current moment, don't worry, it will change soon. It's hard to remember that fact if your current moment is a sour one, but hindsight proves much sweeter, so don't be afraid to wait patiently. (I am telling myself this very notion every day.)  I was thinking the other day how much I love my life though. Each of us has our own story, and I really do love my story. It's incredible to see how God has so specifically and obviously answered some of my past prayers with our little Levi. Some time ago, I began to pray things like:

Please help me NOT to look like the rest of the world, but to view the world as you do. 
Please help me never to be comfortable in this life.
Please help me not to get sucked into the "stuff" of the world, but to be changed from the inside out so that I may not be seen as a hypocritical Christian. 
Please help me to praise you when times are good and when times are bad. 
Please help me to die to myself and become more like Christ. 

I can see now that God is answering all of those prayers exactly. Although we don't always choose the method of response, I trust that His ways are perfect, and I'm constantly at peace when I feel God speaking to me directly.  If you've never been specifically direct with God, or if you happen to be reading this little blog for an update on a sweet preemie boy, but you don't actually believe in God, or you just don't care to think about whether there is a God or not. I would suggest you try praying to Him and asking Him something very specific. I truly believe if you are sincere in your quest and completely open to a response, God will speak to you. There's no doubt about it; there's nothing to lose except possibly an unbelievable relationship with your Creator and a lot of purpose in pain if you don't at least try. There's joy in the midst of heartache. For example, here are some things that have made me smile this week.

1. Silas walking by Levi's future room and saying, "Night, night, Levi." and kissing the air as he passes.
2. The nurses giving me some of Levi's preemie clothes because he's too big for them now!
3. Doing multiple loads of laundry a week for a son who doesn't even live under my roof yet.
4. Letting myself have coffee every day instead of every other day... just because.
5. Eating chocolate chip banana pancakes at 11:00 at night with my best friend who happens to be my husband too (before the no dairy rule began of course) just to have a little spontaneity in our lives.

Who wouldn't be excited about dairy-free chocolate cake!?
When I left the boys to go to the hospital, this is what went down at the Smith house.
Well, I actually told Matthew that I got some washable paint that they could use in the bathtub. He asked if he should bring paper in the tub, and I assured him that that would defeat the purpose of going in the tub. :)

I have so much to smile about, but there are still things we are sitting and waiting on God to reveal. Thank you so much for your continued prayers as we walk through this lap of the marathon.

Praises-
~Levi is off the Bubble Cpap and on the high flow!
~Levi is almost 6 pounds!
~Levi did well with the MRI and doesn't have any initial red flags!
~Levi is more alert and responsive lately!
~Levi passed another eye exam tonight!

Prayers-
~The neurologist wants us to call him at his office tomorrow to discuss the MRI results completely.
~Levi had several good days followed by today where he started having episodes of apnea again, which seemed to be due to excessive secretions getting stuck in his throat and stuck on his feeding tube. So his lungs are strong, but we are still struggling with his airway.
~Levi's vocal cords to recover before the next ENT visit.
~The doctor mentioned Levi possibly going home one day on a feeding tube (it's also possible for babies to go home on oxygen- a double dose of nursing school which scares me!).
~Our ability to continue to trust one day at a time.

We praise God for each of you!

~SmilingBuster

Thursday, May 14, 2015

Meltdown


Silas is certainly at the "sponge" age. He can repeat just about everything I say. When he has his little meltdowns, I simply say, "Okay, go ahead and have a meltdown right there, that's fine." Now, whenever he doesn't want to do something, he simply sits down and calmly responds, "Mommy meltdown right here." He's certainly missing the definition of a meltdown, but he's smart enough to recognize that we all have a right to a meltdown now and again.
I exercised that right yesterday. After holding myself together for quite some time, I was utterly lost after an extended phone call with one of Levi's doctors. Without going into all the complicated medical details, let's just say that Levi is a big question mark with regard to his apnea. Thus, there are plans for him to see a neurologist, another ear, nose and throat doc, a plastic surgeon, have a sleep study, a swallow study, and still try to figure out if he has a bladder infection while I abstain from all dairy products until told otherwise. Did you know chocolate is a dairy product!?!?  What!?! At least I drink my coffee black for goodness sake!
After throwing my phone, letting out those deep, belly sobs, and kicking the basement walls until my foot couldn't take it (not just because of the dairy restrictions of course, but from the overwhelming amount of information), I took a deep breath and went upstairs to tend to me toddler, who thankfully had been asleep right up until my last wall kick.
Again, my amazing partner through all this reminded me that Levi is a question mark because in reality everything is a question mark until God reveals the truth to us. I love you Matthew! None of us believes anything until our eyes are open to it. We can't expect the doctors and nurses to give us all the answers when they are really not in control in the first place.

The great news : Levi is down to level 6 on the Cpap Bubble (once at 4 he should move off the bubble again). Also, he has not had any episodes in the last 24 hours! I held him for an hour today and relished in how well he looked.

We are hopeful today that with less poking and prodding, Levi will surprise everyone by not needing any of the surgeries that were mentioned if he doesn't improve.

Please lift up our baby boy:
- His bladder and bowels - if he has a simple UTI, I actually get to eat dairy again. If not, I'm off it for a while. Yet we don't want him to keep getting infections either.
- His body's ability to respond to so many different meds and antibiotics.
- His voice box- the ENT noted that there was little movement which can cause a host of other issues (my motherly instinct actually warned me of this three days ago. He can't make any sound while on the vent, and I began to worry about his voice because he's been intubated for so long. My concerns were just confirmed. Please pray his voice heals these next two weeks before the ENT returns.)
- His jaw/chin- a plastic surgeon said both are small, but not the smallest. Waiting to see if he can learn to swallow before taking a surgical route.
- His brain- Doc wants to do another MRI soon so that a neurologist can double check results and cross out any serious developmental issues from the list of possibilities.
- His hand and feet. The least of our concerns right now, but always important to cover them in prayer for mobility and growth in the future.


While we are so thankful for medicine and science that have helped keep our little Levi growing at such an early age, sometimes they can also be a curse. There are so many things that we know today, which force us to over-worry and over-evaluate. Hoping and praying that he just needs some love, prayers, and rest.

God bless you all!

~Milk-free Buster

Tuesday, May 12, 2015

Motherhood, Mice, and Medicine

If we all look like a hot mess in this picture it's because it was 90 degrees and the weekend was a bit of a mess. Instead of rose petals and fireworks for mother's day, we were simply trying to hold down our breakfast during this selfie. Thank goodness Silas was the only one with the 24 hour stomach bug. The good Lord spared the rest of us, but it was touch and go there for a while. When Si-man started coming around late Saturday, I decided to do a little finger-painting in the unfinished basement just in case we had any other bodily fluids to clean up. While Matthew masked up and visited Levi, I left Silas alone for just a moment to grab some water upstairs. When I returned he said excitedly, "Mommy look!" "What is it buddy?" I looked in the direction he was pointing and gasped as a small critter was hiding behind some Matthew's tools. Breathing heavily I looked for a weapon, but could only think to grab our paint pallette (a brown paper bag) and open the sliding glass door. The next three minutes consisted of me screaming bloody murder and fighting to keep the rodent away from myself and my child. I finally managed to scoop it out the door, and I realized I may have scarred my two-year old for life. When I turned in preparation to console him, he was still sitting happily with his paintbrush and said, "Mouse in house. Get out mouse. Get out of house!" Apparently he reads too much Dr. Suess. I was the only one who needing some consoling.

With all that we have had going on, I began to be sorely upset on Mother's Day. But I realized that it's really kind of silly for Hallmark to self-impose expectations for moms on a certain day of the year, when mother's should be celebrated every day. When you become a parent, you begin a journey of forced selflessness. As difficult as this is for some, it's a lifestyle shift that I hope master, and it started by me looking at all of my blessings this past Sunday instead of my selfish desires. I made another very significant decision this past week too. I have decided to be a full-time mommy. I have yet to tackle this title, and even sought to fill my plate with additional titles these past two years. Somewhere along the line I began to believe the notion that I wouldn't be viewed the same unless I actually did it all: wife, mother, and employee. While there is never one right path for everyone, God continuously shut doors and made it completely clear that I was suppose to stay home with my boys right now, and that includes my husband. I will miss my sweet students, but I also feel incredibly grateful that God has given me this opportunity. It is truly a "death to self" as you seek to make a home that can grow your family closer and closer to the original design.

Levi's continued NICU care as certainly affirmed this decision. Without going into too many details, I can tell you that his MRI was deemed "inconclusive" yesterday because he couldn't stay still long enough even with morphine. However, the images they did capture didn't show anything significant, so the doctor wants to wait until he's much better and only on the last stage of oxygen assistance before performing another MRI. Levi is scheduled to be extubated (off the vent) today and be viewed by the ENT this evening! He also may or may not have another bladder infection, but we will no for sure tomorrow. This also means that he's on more meds and off food until they can confirm it tomorrow. Little Levi has ingested more medicine into his tiny system than I've had in my lifetime. Every nurse and tech that sees him is amazed at how much "secretions" his little body makes. I know that I'm no doctor, but I can't help but think he's trapped in a vicious cycle. He can't eat by mouth until he's breathing is stable, but that means his mouth gets dry, gooey, and filled with secretions. Then he chokes and gags and can't breathe. If he could talk, I think he'd say, please give me a cup of water and I'll breathe better! Either way, God's still carrying us all through this.

Please pray for my baby boy's--
Breathing
Brain
Bladder
Belly
Blood
Bones
and whole Body

Thank you with all our hearts. Thank you!

I couldn't have my boys at the same time for mother's day, so I brought this picture instead. Silas on the left at 6 weeks and Levi on the right at 9 weeks. Holding one boy in my arms and the other with my thumb. Thank you God for letting me mother these sweet gifts.

~MotherBuster

Thursday, May 7, 2015

Numb or Covered?


 The past 48 hours have been quite a roller coaster, and while I should be feeling a lot of emotions, I am not. If feels as though I'm numb from all the constant ups and downs; my mental and emotional capacity has hit its maximum. Or it could just be that God's loving angels are protecting me from losing myself in the storm. The constant prayers that are flooding our family have enabled us to experience a peace that truly does surpass all understanding. Thank you Jesus.

After Levi's constant episodes Monday and Tuesday morning, the doctor actually put him on "high flow," which has been our current goal. It means his lungs are strong enough to get off the bubble CPAP. I was a bit confused, but the doctor explained that when he's not choking or obstructed, he doesn't require additional air, so testing him on the High Flow would help get some of the unnecessary pressure out of his tummy and lungs, which the bubbles from the CPAP can cause. I was thrilled! This means we are closer to trying other "normal" baby functions. Then yesterday came and the doctor informed me that Levi was re-intubated. WHAT!? He's back on the ventilator!? I was shocked. What happened? The doctor felt that even though he wasn't requiring additional air, he was having way too much apnea, and it wasn't good for him to take so long to recover. They tried multiple steps before putting him back on the ventilator, but she really felt like at his age now, it was not healthy to continue to struggle to get enough oxygen to his body and especially brain.

When I went to see Levi last night, the ENT was there to evaluate him. The good news is that he believed much of Levi's issues involved the excessive amount of secretions in his nose. Apparently babies don't know how to breathe out of their mouths for a while, and his nose was filled up with stuff (no one wants to use the word mucus here). :) Additionally, he not only has a small jaw, but he also has a very high arch in the roof of his mouth, both of which will cause build up of secretions and then settle in the back of his throat making it difficult for him to swallow, thus his choking and apnea.
The bad news is that because he had the breathing tube in his throat, he couldn't do his full evaluation of his airway and voice box. Needless to say there are a plethora of problems that could have easy solutions or invasive surgical solutions, but until he can get a full picture of his mouth and throat, there is no telling.

Today, the doctor was happy to here that they can work to get his nose clear, and hopeful that after a few days of rest on the ventilator, we could try to extubate him and get the ENT back to finish the eval. Levi looks pretty peaceful most of the time, but I've had to watch him gag and throw up multiple times. The nurses think it's just his aversion to the big tube that is back in his throat. Ugh.... I'd hate that too!  At least his feeding tube has been placed past his stomach and into his intestine so that he's maintaining good nutrients.

At this point, it's a waiting game. A praying time. A trusting period. There is still so much that is unknown with Levi and so much that we have to leave up to God. Matthew said it best yesterday, "I hope we can continue to respond with faith and trust that God is bigger than all of this because lots of people are watching us at that hospital. When you know God intimately, His presence allows you to feel peace in the midst of the storm."

Thank you so much for praying with us!

-- Pray that Levi won't have to be on the ventilator for long.
-- Pray that Levi won't continue to choke and gag.
-- Pray that Levi's brain will be protected from lack of oxygen during his episodes.
-- Pray that Levi will not have some sort of major anatomical issue that requires plastic surgery.
-- Pray that God would strengthen Levi and our family during periods of waiting.

-- Thank God Levi continues to grow and weighs 5 pounds 4 ounces!
-- Thank God I can continue to provide Levi with food!
-- Thank God Levi had another successful eye exam on Tuesday!
-- Thank God for great doctors and nurses at Northside!
-- Thank God for sweet Silas that constantly brings us joy and wants to hear stories about the adventures of Levi and Silas (his best friend that he's never met).
-- Thank God for each of you!

~Covered Buster

Tuesday, May 5, 2015

When you don't know

I heard a story once about a man who had been sitting at a red light for what seemed like days. He was inching his way to the traffic light at snail speed trying to maintain his composure as he was already extremely late for a very important meeting. Finally, he only had one car in front of him. Suddenly the woman chose to get out of her car and rummage through the back seat. She was certainly trying to move quickly, but he couldn't believe that she chose that moment to grab something from the back. The light turned green, and she continued to scurry around in the back. He laid on the horn to give her a reminder of their current traffic situation, but she didn't budge. More cars began laying on loud honks as the woman was now holding everyone hostage at this horrific light. Finally, someone heard her scream for help beneath all the honking, and ran to her aid. Lo and behold, the woman had an infant who was choking in her back seat.

While this story has multiple morals, it certainly reminds me that we don't always know the full picture of our current state, even when we think we do.

This past weekend, Matthew and I celebrated our 4th wedding anniversary. It could not have been more amazing. Not only did we get away to a nearby hotel for some rest and reconnection, but we finally took our first family selfie (minus our si-man).

As we continue to sit and wait on many "unknowns" with Levi, I think about that choking infant. I am constantly the man in the honking car wondering why someone can't seem to recognize my need to move. When in reality, God asks us to trust him whether "for better or worse, in sickness and in health, whether hungry or well-fed, in richness and in poverty, until our dying day," God asks us to trust Him even when we don't have answers. If we can pledge that to another human begin, why can't we trust the all-powerful and always loving God?

We need your prayers once again...
After experiencing several "episodes" in the last 48 hours, the doctor determined that Levi has "obstructive apnea." In other words, when Levi is not on his back or other airway obstructing position, and as long as he's not trying to swallow or gag, he needs NO additional oxygen. Thus, he's down to a 4 on the bubble CPAP! YAY!  However, he continues to choke, gag, and spit up or be placed in a position that seems to keep air from entering his lungs. His lungs are not the issure; rather, there is an anatomical issue that we need to figure out. Levi will see a pediatric ENT in the next 48 hours to assess the issue and hopefully come up with an easy solution. The doctor said that he not only has a small chin and jawline, but his great weight-gain could have caused these episodes to increase. As he approaches his 37 week gestational age, the doctors would have liked to see him have less apnea. The good news is that he seems to be making improvements on the strength and weight end, but the bad news is that his apea is becoming a more serious concern.

Please pray:
~For Levi's ENT appointment to go smoothly and for a non-surgical solution to be found
~For Levi's eye exam to go quickly and positively tonight
~For Levi's temporary "tongue splint" to help temporarily help with the apnea
~For patience and peace for our family as we continue to buckle down during this journey

Praise God Levi continues to get stronger in his limbs and his mobility. Praise God for the wonderful man I married four years ago. God knew we'd be able to weather this storm together with Him. And praise God for my sweet Silas that constantly brings me joy and love that lift my spirits.
Silas swinging with his BFF
Our sweet neighbors gave us their pool net that Silas can dunk for days! Thank you!
Love in Him,

~Honk if you can Wait Buster