Tuesday, March 31, 2015

Confessions

I have had so many people thank me for my honesty on this blog lately. I haven't really thought about my level of truthfulness until those remarks of gratitude were given. I think I naturally wear my heart on my sleeve, and thanks to my upbringing, I often hear the term TMI, which just means I'm obviously not scared to express myself. However, I also believe that when you are going through something difficult, it's much easier to be raw and real in front of others, even complete strangers. Often times, it is these "real" moments that bridge the gap between hearts and allow us to live truth.

I must confess, this marathon is really all over the place. It's like I hit mile 7, and I can't believe I'm only at mile 7! This past weekend, I felt covered in prayer, peace, and love. Matthew and I enjoyed a much needed date night, our little Levi enjoyed a quiet and restful weekend, and our big boy had a blast at our neighborhood Easter Egg Hunt.  I really just felt joy at my life and trust that Levi is in good hands and will be through this before I know it! Then cloudy Monday came and my attitude changed with it.

He caught on to the hunting concept pretty quick when he saw candy in the eggs.
I confess I have always been scared of grown-man sized bunnies. I hate them! For some reason Silas thought he was his new best friend.
I was trying to avoid this guy like the plague, but Silas loved him way more than Santa!
Love his bubble-blowing face!
Levi's nurse told us Sunday night that he had started having "episodes" again and was spitting up a lot of his feedings. Because it was strange how much he was vomiting, the doctor ordered a slew of infection tests Monday morning.
Patience is the name of this game... I heard recently that you can't ever really learn patience without going through something really hard, which actually forces you to be patient without your ability to function otherwise.
I feel helpless right now. I'm waiting to hold him again; I'm waiting for him to get off the vent; I'm waiting for some good news; I'm waiting for some bad news; I'm waiting, waiting, waiting. But I'm so grateful to learn patience because I sincerely hope to be a surprisingly patient person by the end of all this. It's a virtue too few of us possess these days.
The pity party started Monday night and bled into today. Then God blessed me with a couple of nurses who not only distracted me with their sweet conversations, but showed me different lives that all come with challenges at one stage or another. With their love for the Lord, I realized that if mommy falls apart, so does the rest of the family. I have to put on my big girl pants (like I've been asking both my baby boys to do lately), and saturate myself with Truth. How can I expect my boys not to complain if mommy complains when handed a curve ball.

Then we found out that Levi has a UTI (bladder infection), which is most likely the cause of his recent issues. This is probably the easiest to treat, most expected, and least scary of infections that he could have contracted. It is our prayer that after getting this infection under control, Levi will be more ready to get off the ventilator!

Come on mile 8!  Let's do this.

Silas just learned how to put his hands in his pockets and wear his own backpack. When did you turn seven!?! Stop growing please!

Thank you for your constant prayers and support. They mean more to us than we could ever express!

Please continue to pray for our little Levi:
His strength, his infection to clear up, his lungs and breathing, and next week he has an eye exam to see if his retina attached correctly and whether he has a risk of partial blindness!

There's real power in prayer and we thank you for being our warriors!

~True Buster

Thursday, March 26, 2015

Dear Levi



After an amazing day of holding my little Levi and hearing great news, we are now in the rough. These are the bumps that require us to hold our cross tightly. Today was a tough day. Levi didn't do so well off the ventilator, so they are having to re-intubate him as I type. I happen to be there right after he was extubated, and I had to hold back emotion while watching him "forget to breathe" for fear that they would ask me to leave.
My heart ached thinking about all that we are asking Levi to do at an age where he is not suppose to be able to accomplish such tasks. I thought for a moment how hard and broken this world is, and maybe Levi just wanted to rest in peace and not join it, and I would completely understand if that was God's will. These are the true confessions of a mother who has not yet welcomed her baby into her world.

Levi, here's what your mommy wrote to you yesterday. 

Sweet Baby Levi,

 You decided to make a grand entrance into this broken world just 18 days ago. While scary and unexpected, I am so glad you are here. God has such a great purpose in your coming early, and I believe He has amazing plans for your future. I know that you probably won't care to read this journal like a daughter might, but I want you to know how loved you are, and your young momma needs a place to think and process all that we are going through as a family.
Silas has certainly struggled with your arrival along with many other coinciding changes. It's strange that for the last two years he's held all of my maternal heart. But now, instead of a life and heart divided, I feel as though I have grown a whole new heart. My Levi heart is big and growing. You are such a fighter Levi Joseph Smith. Not only did you come two weeks after I lost another baby to miscarriage, but we thought we lost you multiple times at the beginning of my pregnancy.
You continue to fight to be in this world, and I can't help but believe Go wants to save other lives through yours.
When I think too much about you, I get a little sad because I'm not there holding you, comforting you, protecting you, and giving you all you need to survive in this world. I'm having to trust and rely on others I barely know to watch over you. Yet, this is one of life's greatest lessons because you have never belonged to me. You are God's and God's alone. He created you and entrusted you to our family for a time. I have the honor of being your mommy while on Earth, but I know it is really God that holds you and provides you with the comfort and protection you need.
I will disappoint you from time to time, and I won't always be available at the moments you want. This is practice that I know you'll adjust better to than most because of your unique beginning here.
I pray you know your loving Creator intimately and trust His guiding hand every step of the way.
I know you will teach me just as much as I teach you, and I thank God for that. We are both surprise second born children so we will have our own bond in this life.
You are loved, adored, and prayed for every day sweet Levi. Mommy loves you!

Tuesday, March 24, 2015

Levi Experts- 411 update

Today I had an official "case management" team meeting at Northside, so I basically received a lot of great info on how to be a Levi care expert from every department caring for our little man.

So many have asked for specific updates, but there are a lot of two steps forward and one step back at this stage of his care; thus, there hasn't been a lot worth mentioning until now.

LEVI UPDATE:

Levi is suppose to get his PIC line out today! This is a praise because it means he's getting enough calories from his feeds and doesn't need an additional IV for fluids and other supplements. One less wire coming out of him!

Levi started on steroids last night to help develop his lungs a little more, and the doc thinks they will be able to try him off the ventilator in the next few days! The hole in his heart is smaller, but apparently not a issue for him right now!

Levi's PT believes that he will simply need splints and therapy for the beginning of his life and won't ever need braces on his feet!
I should be able to hold Levi again in the tomorrow or Thursday if all goes well! 

Overall it was a great day. I have so much admiration for medical personnel, and I've really enjoyed learning a lot of it myself. Matthew and I think we would both enjoy a little med school (minus the blood, sweat, and time involved.)

We are praising God for a great team of doctors and nurses, and I know we'll have plenty of ups and downs, but we are feeling those prayers today! Keep them coming!

In honor of a great day, one of my best friends, who is more like a sister, sent me probably the most perfect care package, and then the best video for today. If you know me, you know I grew up dancing and even had a stint of teaching little ones years ago. I've missed dancing a lot (but totally worth the break to bring children into the world), but here's a great compilation with some of my all time favorite movies to get you moving..... as if I need a reason to dance!

http://theberry.com/2015/03/17/this-mashup-of-famous-dance-scenes-is-your-new-favorite-video-video/

Love you!

Monday, March 23, 2015

Sandbar

I remember when I was in high school and in order to become an official certified lifeguard, part of the training included treading water in the deep end of a pool for like three minutes while holding a brick above my head. If my arms came down at all, I had to start over. That's kind of how I felt the last two weeks. I was simply treading water. When Saturday arrived, I felt like I finally found a sandbar. Not only did Silas finally end his fever spell, but I was able to drive again. Levi seemed to have a couple good days, and I've allowed myself to pick up Silas for "essential" moments. I think we all felt like a family again, so everyone was in higher spirits this weekend. Part of me feels sad feeling like a family though, because we are still missing one important member...... all in God's timing though. I might still be in the middle of the ocean trying to find my way home, but at least I found a sandbar for a few days.

I really wanted to make a "Resurrection Garden" with Silas for Easter, he loved the dirty activity. Maybe this can be a tradition that he'll understand a bit more when he's older.
The "tomb" is suppose to be covered with a rock and the grass will begin to grow around the dirt. Come Easter, we roll the "stone" away and see the empty tomb! Jesus is alive!
Big excitement for the Smith Fam.... We finally got an SUV (or truck if you ask Silas)! We were about to buy this used Pilot right before Levi was born. God is so good..... the family-run dealership happened to be a Christian family with their own preemie story! They were praying for Levi and happy to hold the vehicle for us!  
Silas has been pretty angry whenever we mention Levi, hospital, or brother. Levi's doctor recommended we get him a "pretend Levi" to adjust to another baby since he is not allowed to enter the NICU. Matthew was a little hesitant to introduce a baby doll into the house, but I was happy to see Silas stop hitting the doll and give it kisses.

We love you baby Levi!

Prayer requests:
~Levi's lungs to be clear of fluid.
~Levi to get off the ventilator.
~Levi to remain stable long enough for me to hold him again.
~Levi's continued growth and strength.
~Our new life with a baby in the NICU and a toddler at home.


Thank you so much for your constant love and prayers!

~SandyBuster

Thursday, March 19, 2015

Whispers of comfort

There are those times when I'm pumping around the clock, or when my little man is napping that I wonder what I should be doing. I usually have a host of things I'm crossing off a list at any given moment, but lately I've felt almost dumbfounded. Should I catch up on something, do laundry, eat, sleep, check on our expenses, pray, read, write, cry, laugh, call someone? It is those moments that I realize my heart and spirit are trying to catch up with all the changes that have flooded my mind these past two weeks. I went for a desperate walk the other day and just tried to focus my thoughts. I realized that I actually wouldn't trade places with anyone right now. As hard as it's been, I feel like this is really living. I really don't want an easy life, cause that just means I'm not going to have much to offer those who are hurting; plus, I've seen more goodness in the past couple of weeks and felt more purposeful than I have in a long time. I can see life with a new lens for a bit, and focus on what really matters. So it's not that I hate what's happening, I just can't seem to compartmentalize it all because I've felt things hitting on every side of my life. It's not just our precious Levi or Silas, it seems like things have been hitting from all random sides.

Yet, I've recognize a constant whisper of God's voice that can't be denied, and it's just a fresh breeze to my soul. Every so often, Silas will just look at me, pucker up his lips and say, Uh vu mommy! (love you mommy!) It's like he knows I just need a break and need to be loved for a moment. Then there was last night: Matthew and I were driving home from the hospital. The picture of his radio is broken, so we can't tell what station we are listening to, but all of a sudden I thought I heard the radio personality say, "miracle baby stories." It caught my ear, so I turned up the volume. They proceeded to take a call from a young teenage girl. She sweetly explained that she was born 12 weeks early (the same as LEVI!) and that she really appreciated all the love and care she received in the hospital and everyone that prayed for her when she was born. She said she wanted to encourage moms and dads of preemies because she's "been dancing for 7 years and she's doing just fine." She said it's tough to go through, as her parents told her, but that everything would be okay.   Seriously!  I instantly felt chills and started crying. God was whispering right to me.
Finally, when I see the hardship of some that we know experiencing cancer treatments on their three-month old, I hear God again whispering. It's that perspective change we all need in this broken world. It's truth that I cannot deny. I am loved. My family is dearly loved, and God wants us to share our stories so that His love can be known.

A few ways we can keep praying:
~Pray for our friends baby, Whit, to be healed from cancer!
~Pray for Levi's second cardiologist report today and his ability to get off the vent!
~Pray that Levi's blood count goes up so that he doesn't need a transfusion!
~Pray for Silas to stop getting a fever every 12 hours!
~Pray for our family to continue to be a light to all we meet though this!

Thank you for your prayers!

--Comforted Buster

Tuesday, March 17, 2015

Callouses



Any work that takes strength, stamina, and long-suffering endurance hurts the most in the beginning before the callouses are formed. I'm starting to feel those callouses form on my fingers, knuckles, feet, and knees, which helps the marathon not hurt so much. However, I sincerely pray that my heart doesn't callous over during the process. I want it to remain soft, malleable, and open like my sweet Levi's heart is currently.

We had a couple days of respite after my last update. Saturday night and Sunday seemed to be steady and sweet as both my boys found some rest. I've learned that no news is good news.

Then yesterday another hill was digging yet another callous. Long story short, we ended up at the ER Monday night because Silas had a temperature of 103 and was very lethargic. After some Tylenol though, it came down to 99 and the wait to be admitted was ridiculous so we brought him home and just took him to his doctor today. When he has Tylenol in his system you'd think I was lying about the ER visit, but every six hours he because hot, red, lethargic, and fussy. We aren't sure what's going on, but we are just suppose to watch him for the next few days to see if he's just fighting something off right now. Hopefully he's just trying to compete with his little brother on who can stay at a hospital the longest.

Levi also tried to scare everyone Sunday night when he extubated himself, which basically means he moved in such a way as to remove his own ventilator (I don't blame him, it doesn't look enjoyable). After re-intubating him, the doctors wanted him to rest, understandably.  His heart murmur was louder on Monday because of his PDA (that hole in his heart), so they are treating him with ibuprofen (don't ask me how that works), and explained that this is probably why he's struggling to get off of the ventilator. After three days of ibuprofen, they will do another echo and look to see if the PDA has closed any, which will tell them the next steps with the ventilator.
We learned that the brain scan came back good! Praise GOD! They found no significant bleeding or hemorrhage; however, there some medical jargon about the right side of his brain looking bigger than the left (probably because he'll be like his momma- English side), and there could have been a tiny bleed or some extra brain fluid movement or something, which just means they want to triple check and do another ultrasound on his brain next week.

All is all, we feel peace for Levi's care. One doctor said it best, babies at this age can only focus on one thing at a time. Usually they are either really good at eating or really good at breathing. Apparently Levi is like his daddy because they keep telling me he's a great eater!

Praising God for
~the ability to love two children that we have been gifted
~Levi's good brain scan
~Matthew and I staying healthy and my quick healing
~the outpouring of love by so many in our lives

Praying to God for
~Levi's PDA to close so he can try to get off the vent
~Silas' illness to vanish
~Continued rest/peace for Matthew and I as we try to stay close to each other and the Lord during this marathon

Love you all!

~Calloused Buster

Saturday, March 14, 2015

Update #3

The past few days have proven to be times of sincere pruning. While there is always a way to focus on the positive and recognize things could be worse, I honestly didn't have the hormonal stability or restful rationality to find that perspective Thursday night. It was one of only times in my life that I've been angry with God. For that reason, I couldn't feel His peace and presence while I stubbornly shook my fist.
It all occurred because our poor sweet first born was struggling with way more than he could handle too. Not only is he getting some new teeth, but it turns out he has a sinus infection. Thus, he couldn't use his trusty pacifier that he still wants to go to sleep. He was exhausted from lack of sleep, throwing two-year old tantrums, angry that we had been away, sad I couldn't pick him up in a standing position, couldn't eat much of anything, and struggled to sleep. Oh and he has been potty training the last month too!  This kid is actually incredible if I think about it. Praise God I had others praying for our family when I was too tired to say anything but "Please God." Two days later and I believe he's weened himself from needing a pacifier and antibiotics are starting to kick in!
It was just one of those valleys we all walk through when we can't yet see the light and God is there holding us the whole time like sweet newborns. I felt so helpless though. I could do nothing to help either of my children, and I felt like I was failing in every aspect of life. Sounds dramatic, but let's be honest, the hormones and sleeplessness can take it's toll. I'm so thankful my level-headed husband can whisper truth and my friends and family can send love notes on my behalf.
I keep thinking of Job in the Bible with all he had going on, all the heartache and retracted gifts. Then his wife pretty much curses his life, and his response: "Shall we accept good from God and not trouble?"   Such an honest and truth-filled response.  I mean do I really expect to have only good things in my life?  That's not reality, and that's not what I deserve. I'm so thankful that I can grow through this while God carries me, even with my displaced anger.
On our precious LEVI-  there isn't anything really new to report, but I did get to hold him yesterday!  There aren't really words to express what this was like. When you have a child way sooner than your suppose to, and you come home without that child as if it was all a bad dream, it feels like you should still have that baby inside you. I thought every little stomach pain could be the him moving. Then, you remember that's impossible. When they put that precious, tiny boy in my arms (tubes and all), as challenging as it was for the nurses to gently place him without hindering any wires, it felt like I got my arms back. It felt like I had been forgetting something every minute of the day and I finally found what I was looking for. He quietly breathed on my chest in a little ball and everything felt right again. That's where he was suppose to be.
I still have moments where it feels like we are missing a part of our family, but I relish in the ones I have, hug them tight, and ask God to cover my Levi with his arms while I am away from him.
Thank you so much for your constant love and support. If we've forgotten to thank you for a meal, neglected to return a phone call, or accidentally skipped an email, know that it is not because we don't care. We are so grateful for each of you, and hope to shower you with the same love you've shown us this past week!
Happy 1 week birthday baby Levi. We love you!
Prayer requests:
1. That Levi would be strong enough to stay off his ventilator soon.
2. Levi's brain scan on Monday.
3. Levi's feet and hands during PT
4. Silas' sinus infection and adjustment
5. Matthew and my rest and peace

Tuesday, March 10, 2015

Thank you!

 
Tonight I walked through the halls of Northside Hospital for a few quiet moments as I tried to digest all that has happened in the last 72 hours. There are times when I feel completely unsure of why so many people have wanted to help me and my family. I wonder why because I think that we haven't experienced any more than anyone else. There are so many around the world facing unimaginable pain that makes my heart hurt. My current troubles don't seem any more significant.
Yet, then I realize that if I were watching someone else go through the uncertainty of losing a child, gaining a disabled child, missing a child, or physical discomfort of any kind, I realize that I'd want to love on that person in any way that I could too. But let me please say that each of you has touched Matthew, me and our boys in ways we cannot express. I know this new journey of hospital visits is just beginning, but I'm so filled with love tonight that I find myself wanting to love on every single nurse, tech, or stranger I pass in the halls. I've never been less occupied with myself and more interested in others than I am right now.
That said, it has been hard to let so many love on me, but I want to thank you because your love, tangible gifts, and prayers have enabled me to love others who are equally hurting in this world. Your love is pouring out of me and enabling me to heal in ways I wouldn't otherwise.
2 Corinthians 1:3-5 says it better than I can:   "Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ."
Whatever you are facing today whether you think it's worthy of calling a trouble or not, know that love is everywhere, and God's love can truly give you joy and purpose in every moment. We aren't here very long, whether a few hours, a few years, or a few decades, so know that you are loved dearly, and I thank God for you. 
Matthew and I believe prayer is a real a powerful thing. We've seen it change lives, so there's no denying it. If you would like to pray for us, here's what's on our hearts today:
1. Levi's genetic testing that was postponed today, and hopefully will occur tomorrow
2. Levi's heart murmur found today that they say is completely normal but may take time or meds to heal
3. Levi's continued PT sessions and success with his limbs
4. Levi's peace, rest, and growth. And hopefully Katie can hold him soon.
5. The transition Katie will undergo leaving Levi tomorrow to go home
6. Silas' transition as our lives change
7. Katie's desire to be a part of every aspect of both her boys lives. Giving up control to God.
8. Katie's quick healing so she can take care of all three of her boys
9. Matthew's rest and peace as he cares for his family
10. All the people caring for Levi and the lives that will intersect with the Smiths, that they will be joy to all they meet

Thank you, thank you, thank you from the bottom of our hearts. I will probably keep thanking you, and I know I don't need to, but I don't know how else to tell you we love you and appreciate you!
With love,
CubBuster, Matthew, Silas, and Levi

Monday, March 9, 2015

Levi Joseph Smith

There are so many things running through my mind at this moment, (for which I'm sure there will be additional blogs) but I felt like I needed to at least put up pictures to document the monumental occasion that occurred this past weekend. We have another little boy in the Smith family. Levi Joseph Smith was born on March 7 at 11:55 am weighing in a 2 pounds 5 ounces and 14 inches long. While he was anxious to join the world at 28 weeks old, he is a fighter, and we have never felt so blessed by the miracle of what it takes to grow a child.

One of the harder lessons I've learned this past week is what a mother goes through when splitting up time between two children. I have a new appreciation and respect and really a burdened heart for moms of little ones who have to be in hospitals for extended periods of time. Trying to explain to Silas why I can't come home and why I can't pick him up has broken me a few times, but I am also extremely amazed at how God has provided resources, people, and personalities to care for my big boy, my little boy, my hubby and myself. It's truly humbling and brings tears to my eyes. Thank you. Thank you. Thank you. To everyone who has prayed and continues to pray over our situation. It could be so much worse, yet we will trek on day by day in faith. Is there any other way? More on our journey to come...



Silas enjoying play time with the beautiful Wren, daughter of an angel, Dana, who came the second we needed a sitter.

Silas' new buddy, Chloe, who came over with my parents. Another gift from God that my traveling parents were in town when Levi made his entrance.

My sweet sister Caitlyn gave Silas some girl time with her daughter Evie on the far right. He's def a ladies man. :)

My precious Levi grasping my finger as he gets some rays in the tanning bed. It made me cry.

Silas saw Daddy doing yoga one time, and now he will just spontaneously bust into downward dog and say, YOGA! He's got great form.

God truly gave us some much needed down time before everything sped up. With the snow, ice, and unplanned weekends, I witnessed my boys reading their Bibles together. One of life's perfect moments.


New pastimes that show me how much Silas is growing up.

Silas has already started potty-training, which may slow down now, but he LOVES his big boy pull ups.

12 hours after an emergency c-section, I was able to finally see my newborn son. It was truly a miracle that he was here and that he's continuing to grow and fight to stay and make a difference in this world.


We love you Levi. You sure knew how to make an entrance. May God give us strength down the long road ahead. May you know you are loved dearly, and may we have the wisdom and peace to trust God over your care and recovery. Thank you Lord for blessing us with the gift of Levi.

~MommyBuster