Calming of the Storm

Yesterday morning was, without doubt, the hardest morning Kasey and I have ever had. We were confronted with the full realization of Serenity’s terminal illness. The final treatment did not work. How truly amazing it was for the two of us to wake up on Friday, November 29^th, with a peace. After we quickly got ready, knowing deep down, it would be the last day we held our precious little girl; we held each other and wept. Somehow, we both new and we told each other, “Today, we will have to let her go.”
This storm, in its undesirable length, has come to an end. The thunder rolled and tears fell hard, but light has shown, and the overcast of darkness, which has followed us these past five months, has begun its retreat. Our lives are, and will forever be different, as this chapter, for lack of better words, has ended. Our hearts are empty, but His grace is sufficient. And in that peaceful, precious moment, we held her between us as she passed, slipping from our hands and into everlasting, her forever-perfect life. 

As the moment seared into our minds, the last line of C. S. Lewis’s book, The Last Battle, invaded my mind. It says, “The term is over: the holidays have begun. The dream is ended: this is the morning.” As we laid her down one final time, we knew her true day had just begun. While, for us a chapter has ended, for Serenity, a chapter has just begun. She will, for eternity, bask in the light of our Savior. As we let her go, we know we will someday see her in eternity and worship our risen Savior along side her. On that day our dreams also will have ended and our day will begin.

Cancer of the heart.

From the beginning of our journey that began July 1, 2013, we have attempted to be real and honest with everyone.  However, there is one thing that I have kept hidden.  There is one thing I was ashamed of being honest about.  So why have I decided to share it now?  Because up until this point, I have let things fester and become ugly.  But I believe God has opened my eyes to some important truths this morning that I wish to share with you all.  So please bear with me as I fold back the layers of my heart and expose the ugliness that hides deep within, and then share with you how God has opened my eyes to His Truth. 

As I stew on this verse today, I realize just how cancerous jealousy is, not only to my bones, but also to my heart. As many already know, we have been through a long, tiresome storm with the birth of our second child, our daughter, Serenity Hope.  In the past several weeks, God has been teaching our hearts and minds in a way I would have never guessed.  One thing that I have struggled with from the beginning, though, is jealousy.  Jealousy of all the posts and pictures on social media about everyone's healthy, happy babies--and healthy pregnancies.  The bitter thoughts I have had of these healthy pregnancies and babies has been a selfishness born from jealousy.  I was jealous of the fact that these families haven't spent the past 145+ days watching their premature daughter go through more physical battles than ever thought imaginable.  I was jealous of all the pictures of beautiful babies with chubby cheeks that come from healthy fat rather than unhealthy fluid build-up.  I was jealous of mommies looking into their precious baby's eyes without having to see puffy, bruised eyes that can barely open. I was jealous of all the mommies that got to cuddle their babies whenever they wanted, when I've only held mine a handful of times.  I was jealous of all the smooth, soft perfect skin that can be touched and bathed, when my daughter's skin is bruised and scabbed from needles and tubes.  I was jealous of all the things other mommie's were worried about, and bitter about their (what seemed to me) petty complaints, when I am worried my daughter may not be able to live past this weekend. 

Not only is it not fair of me to have these thoughts and feelings, it's just plain wrong.  I remember feeling all of the things other moms feel when I was pregnant with Liam--and feeling them after he was born.  I remember all the things I worried over and the things my heart hurt from and even the things I complained about.  Every one of those things were valid to me at that point in time.  What I realize is, not a single worry or complaint was less important than what I'm feeling now.  

But worse than that, if I am jealous and bitter toward mommies over what, to me, seems like perfect babies and perfect lives, I am not trusting God like I thought I was.  I am not rejoicing ---> IN <--- my trial.  I am not putting my hope in Him.  I am not allowing myself to worship HIM.  No, instead, I am worshipping my idea of the "perfect" life, and the "perfect" family.  But who is to say what is perfect anyway?  Obviously my idea of what is perfect is incorrect.  

God's idea of perfect is not a healthy, happy family that has all their ducks in a row.  God's idea of perfect is:

* a person who sacrifices their own desires for His desires.  

* a person who dies daily to self and is committed to bringing honor and glory to His Name, for His Kingdom.  

* a person seeking ways to tell others the Good News of Jesus Christ and what He has done for every person on earth.  

* a person who trusts Him completely. 

* a person who worships Him in EVERY circumstance. 

The list goes on. Although I cannot execute these things in a perfect manner, I know that these are the things that the Lord smiles upon.  I know that these are the things the Lord wants of me.  Not a family that looks like everyone else's.  No.  He wants my heart.  He wants my imperfect, filthy, sinful heart.  And He desires to transform it.    

In closing, I would like to apologize to any and all who may have felt my jealousy or bitterness.  Please know that my thoughts and feelings are no one's fault by my own.  My prayer is that my heart will be able to rejoice WITH you all as you celebrate your healthy pregnancies, and your new, healthy babies!  My prayer is also that no one would feel the need to "tip-toe" around me.  Know that I love you all, and am thankful for your friendships in my life.

Serenity: 20 weeks 2 days (Corrected Age: 4 weeks 4 days)

As you all know, it has been a substantial amount of time since there has been a blog update on Serenity Hope. There has been so much going on, that part of the reason is lack of time, and the other part is lack of motivation. It’s difficult at times to sit and make your brain list out all the details of what’s going on in a way that makes sense and is accurate.

In a nutshell, Serenity hasn’t been doing so great for the past couple of weeks. It’s hard to remember which is the last information everyone heard, but mostly, she had begun to accumulate lots of fluid -- In her chest, in her head, in her lungs, and more in the chest. The doctor has been somewhat baffled by all of the fluid, and the fact that none of the medicine seems to really be helping. And it’s not a matter of her kidneys, because her kidneys are functioning just fine. So after much thought, research, and thinking, the doctor had a meeting with us to basically let us know what he thought the problem was. He believed that the reason Serenity has been having issues with fluid is due to a possible blood clot or blockage of some sort in her veins/arteries. More specifically, he was thinking (after talking with another doctor) that she possibly had SVC Syndrome (Superior Vena Cava Syndrome). Which means a blockage/blood clot in her Superior Vena Cava.  This causes problems.

So, as of last week, he talked to us about wanting to do some tests to see if there is blood clots/blockage in the SVC and talk about what to do about it. But that if they didn’t find anything, or the clot/blockage was too big, then there was nothing more he could do for her. He would have exhausted all of his options for helping her.

In the meantime, Serenity lost her PICC line (a centrally located IV) that is very important for long-term medical care in the NICU. You see, peripheral IVs don’t last very long most of the time, but especially not with Serenity because her veins are so weak. Some peripheral IVs may only last a few hours. Without an IV, she is unable to receive fluids/nutrition/meds. And it can be very bad for a NICU baby to be without an IV of some sort for even just a couple of days. So in order to keep Serenity alive, they need a good IV. And in order to have a good one, it has to be a central IV. They were able to do a procedure to get a Broviac (specific kind of central line) into her right leg on Saturday. This was good news. However, the Broviac went bad on Monday. This was bad news. Praise the Lord; she managed on peripheral IVs for 5 days!! Today, we were faced with another scary scenario, though. In order to get another central line in, they needed to take Serenity to the O.R. They needed to do the line in her neck if they wanted any chance of success. The first attempt was on the left side near the collarbone. This attempt was unsuccessful, as it seems there for sure is some type of blockage on that side in the veins/arteries. However, they managed to get an IJ line (Internal Jugular central line). So now we have a central line. Our hope is that it stays in tact and does not clot, or stop working for whatever reason.

In the midst of all the central line craziness, the doctor believed that the best plan of action for the possible SVC Syndrome is to do Heparin therapy.

Heparin helps keep the blood flowing through the veins, and helps keep it from stopping to join the “clotting party”. ;) Any type of procedure that requires going in surgically and try to remove the blockage or clots would most likely not end well.

So we are giving the Heparin about one week to see if it is going to help. If the Heparin appears to be helping, then we will move to the next plan of action. If the Heparin does not work, then we have come to a point in Serenity’s hospital stay where there will be nothing more the doctors can do to help her. They will have exhausted every resource. 

But the good thing is, we've been getting lots of cuddle time :)

Battling the Storm

Over the past several days, God has been dealing with our hearts and teaching us a few things. Ryan took the time to write it all out so we could share it with you. Please take the time to read it all the way through, and open your hearts to whatever God might want to say to you as well. 

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In all honesty, I have been struggling for some time with truly accepting whatever it is God would do with my baby girl, Serenity. I have prayed and, lately, have begun assuming He has turned a deaf ear to me. The thought of this makes me angry. And I fear it will consume me.

Where does this anger come from? Anger is a deep passion, which, for me, tends to surface when a specific situation does not go in a direction I, in MY good wisdom, deem appropriate. In this case, Serenity is getting worse. I thought He had answered that she was going to make it, and come home with her loving mother and father. However, now I feel my heart telling me she will soon leave this world. She is dying. I know it. Thus, in my grief, I am angry.

But, if I am honest with myself, this anger is a result of fear. The fear a parent has for the life of his flesh and blood. My child. My daughter. For me, a believer, why should I fear? “If God is for us, who is against us?” (Romans 8:31) I would argue, it is Satan who is against me. But, there is something far worse than him. Was it Satan, on behalf of the human race, who first sinned? No. It was Adam. And from that day our flesh has been totally consumed by sin. Hence, what is worse than Satan, and also fights against us? I propose, it is ourselves who fights against us! Fear is a result of my sin-infested self. This actively fights against me.

“The Lord is my light and my salvation; whom shall I fear?” (Psalm 27:1a) Because He is my Light and Salvation, there is no need to fear. The fear is not of Him. It is solely of my flesh. In times of fear, we must understand He is our only refuge. This being said, the past two days have been interesting. Not because of my daughter’s pain, rather, because of the way God spoke through this storm.

Yesterday, as I wallowed in my fear, I forced myself to read my devotional. Currently my devotional is, “Mornings and Evenings” by C. H. Spurgeon. As I was struggling with my fear, I realized I feared that God had let me down. This birthed doubt. To my surprise, Spurgeon wrote a devotion on doubt. Smacked in the face by a long dead man who, it just so happens, had an amazing beard. To explain the seriousness in this, you need to now Spurgeon’s “Mornings and Evenings” were written for specific days. Meaning, the book is chaptered by months. Each day of the month has it’s own devotions. One devotional is to be read in the morning and another to be read for the evening. What I read was specifically written for November 9^th. More specifically, what I read was written for the evening of November 9^th. He died in 1892, almost one hundred years before I was born.

God, through the hand of a dead man, convicted me! Oh, how I doubted the Lord! “Think it not a light matter to doubt Jehovah. Remember it is sin; and not a little sin either, but in the highest degree criminal.” This is what I was reminded of, by God, through Spurgeon, who wrote this over one hundred years ago! No coincidence here. Tell me God is not real. At the moment of my unbelief I read this? It was written for that very day! No, God is very real!

He did not stop there. This morning, November 10^th, Spurgeon wrote on Deuteronomy 33:27. It says, “The God of Old is your dwelling place, and underneath are the everlasting arms. He drives out the enemy before you and commands, Destroy!” First, He reminded me of my unbelief, which spurred from my fear. Then, as I was brought to tears because of this sin, He wrapped me in His kind and loving arms and told me He is my place of refuge! Even when fear finds a foothold, I am IN my refuge. As He holds me, I know deep down He mourns with me. For He and I are one body.

If you still say God does not exist, please hear me again. As Kasey and I found ourselves repenting of our unbelief and doubt, and while He held us close, as He still does, we chose to go to my sister and brother-in-law’s church. The preaching pastor had a friend of his speak this morning. We felt we needed to be there even though we so wanted to be at the hospital with Serenity. I sat in awe of God as this man preached out of Psalm 23. God did not stop after convicting me and comforting me with His refuge. He continued with the words of David about the Good Shepherd. It says,

“The Lord is my shepherd; there is nothing I lack. He lets me lie down in green pastures; He leads me beside quiet waters. He renews my life; He leads me along the right paths for His namesake. Even when I go through the darkest valley, I FEAR no danger, for You are with me; Your rod and Your staff they comfort me. You prepare a table before me in the presence of my enemies; You anoint my head with oil; my cup overflows. Only goodness and faithful love will pursue me all the days of my life, and I will dwell in the house of the LORD as long as I live.”

The Lord is my shepherd; there is nothing I lack. Not only should I have no fear and abide in His refuge, He is my Good Shepherd. David was a shepherd. As he gave king Saul reasons why he should be allowed to fight Goliath, he spoke of how he killed bears and lions with his bear hands in order to save his sheep. Not only does Jesus, as our Good Shepherd, lead us, He also strong-arms the enemy! In this case, my fear and doubt. As my Shepherd, He provides everything I need. So, there is nothing I lack. As one lacking nothing, fear and doubt are un-warranted. He will lead me along the right path. He does this for His name, to prove it trustworthy. If a shepherd, who was hired out, took someone’s sheep down a bad path and lost, injured, or got the sheep killed, his name as a shepherd would be worthless. It would be important for him to keep the sheep safe if he ever wanted another job as a shepherd. So it is with our God! His name is trustworthy! He protects when we go through the darkest of valleys.

            And, better yet, when the enemy is at my door, as though everything is just fine, He prepares a table for me. He does this in the presence of the enemy. Taunting him to try and interrupt! He and they know they will lose against the mighty Shepherd of old! As His friend, He anoints my head with oil. Confirming me as His servant and heir! And as His heir, I will dwell in the house of the Lord from my new birth, and on into eternity! What shall I fear?

            Finally, as I struggled through Him hearing my prayers, I realized I never gave time to hear Him. I kept thinking and talking. It was not until last night, in my bitterness, I heard Him. As I refused to talk to Him, he spoke straight to my sin. Obviously, as I have already written, I repented and He began healing my heart and our relationship. But, now I wonder about my specific prayers. Were they right? Were they pleasing to Him? No, they were not. They were selfish and not centered on the Good, life-changing, News of Jesus our Messiah.

            John 15:7 says, “If you remain in Me and My words remain in you, ask whatever you want and it will be done for you.” Great! As a follower of Jesus, I can ask Him for anything and it will be done! Yes and No. This is part of Jesus’s teaching of the true vine. He says, “I am the vine, you are the branches.” (v. 5) When has a branch ever told, or dictated, to the vine what would or would not happen? Never! Because life comes from the vine. It flows from the vine in the branch.

            The rest of verse five says, “The one who remains in Me and I in him produces much fruit.” As life flows from the vine into the branches, much fruit is produced. Has the branch done anything? No, it has not. With Jesus as the life giving vine, and me as the connected branch, He flows through me and produces fruit. Not me, but Him. What is the fruit? What is its purpose?

            The fruit is the kingdom building work of God. The purpose of God on this earth is to reconcile with His lost creation. So, the life He flows through me, the branch, is only able to produce the Gospel message. In fact, verse six continues and says, that if no fruit is produced, the branch is cast away and burned, because they are not saved. Then verse seven says, “If you remain Me and My words remain in you, ask whatever you want and it will be done for you.” So, yes, I can ask for anything and He promises to provide. However, for the one connected to the life-giving vine, who, as a branch, is only able to produce the vine’s fruit, I can not ask for anything which does not find itself centered on the Good, life-changing, News of Jesus Christ.

            In my bitter prayers, I have begged for my daughter’s life. I want to raise her. I want to see her and Liam run through the house. To hear them say to each other, “Stop touching me!” To give her away to a Godly man on her wedding day! I so desire these things! I want these things. Are they bad? No, they are definitely not bad things to desire. However, just because I ask, does not mean I will receive.

            As I have contemplated my prayers in light of this passage, I see the error in my request. I prayed for her life. However, I should have, and will now, be praying that God would use her life for the building of His glorious kingdom. I will pray for God to spread His Good, life -hanging, News to the ends of the earth by Serenity’s life or death! Oh, that one would see their sin, repent, and be saved by the powerful blood of Jesus, due to little Serenity! This is what I can and will pray for to the True Vine. Please, by your grace, build Your kingdom through our daughter! She is Yours, not ours!

            As I think of the past two days, I am reminded of my anger, fear, doubt, and prayers. My sin. It is not Satan who attacks in this hour. It is my own sinful flesh. Are my feelings of her dying accurate? I cannot know the answer to this. What I do know, and can say with assuredness, is that I focused anger on my Lord and Savior. I focused my prayers on myself. I was living in fear even though I, as a Christian, have no need to fear. And I doubted God. I believed that His control was, in some way, lacking. Truly, what was lacking was my faith. He stayed the same. I faltered; and in my selfishness, I lost sight of Him. But, to my wonder, He saw fit to pursue me into this dark place and drag me from fear.  He has made a table before my sin and welcomed me to eat. He has anointed me with His Spirit, and I will dwell in His house all the days of my life. And when this life fades, I will dwell in His eternal light and glory for the remainder of eternity. 

Serenity: 18 weeks 1 day (Corrected age: 2 weeks 3 days)

Serenity has had a harder time today. She has been working harder to breathe, sometimes gasping for air, and having a look of panic/fear on her face.
They are thinking she may just need morphine more often, and possibly even need to be on a morphine drip.

We appreciate everyone's love, thoughts, and prayers, as always.

Serenity: 18 weeks (Corrected age: 2 weeks 2 days)

Serenity's doctor wanted to have another meeting with us today. He wanted to discuss from A to Z what is going on with her right now.

Most of the things we knew--some things were new information.

The fluid in Serenity's chest has tested positive for one strain of Staph. The good news (which I believe I have already updated everyone on) is that the fluid seems to be clearing up with the help of medicine. In fact, they have taken the chest tube out as of today, and will continue to monitor through x-rays every day to make sure the fluid doesn't re-accumulate. Her blood, however, tested positive for a different strain of Staph. So the idea of it being a contaminated sample is less likely, but is still uncertain.

Next, is the issue of Serenity's gut. Her intestines are just one giant mess. There doesn't appear to be much we can do for her until we are able to take her to surgery and have them look at everything--and pray they will be able to fix everything.

Lastly, we were given some news that somehow didn't make it to us before. On one of Serenity's brain scans, they found cysts where the previous hemorrhages had been. This is called, Periventricular Leukomalacia (or, PVL for short). Where the cysts are, that means the brain is unable to grow in those areas. There is no answer to how little or how much she will be affected by this until she is older. However, we have to be informed that Cerebral Palsy is a possibility. Most likely she wouldn't be diagnosed with Cerebral Palsy until around age 2 if that were the case, as it can be difficult to determine at earlier ages.

That all being said... Serenity just has a lot going on. She is still a critical baby.

Most important to pray for: weight gain, infection, and gut.

Serenity: 17 weeks 6 days (Corrected age: 2 weeks 1 day)

I just wanted to write a quick update for everyone.

Serenity's nurse said that two separate cultures on the fluid in Serenity's chest have tested positive for Staff Infection.

There has also been one blood culture that was positive for Staff Infection also, but we are waiting to see if this was a contaminated sample, or if it's a true positive.

Because of the positive blood culture, they have to remove her PICC line, which is her long-term IV line that is more centrally located--just to be safe. Once Staff is no longer an issue, they will be able to do another PICC line.

She has also had to have morphine a few times overnight and today. It's hard to tell with an older baby if they are just having symptoms because they are older and agitated or if they are in pain, so they want to make sure she is not in any pain.

The medicine they are giving her for the fluid in her chest appears to be helping at the moment--PRAISE THE LORD!! They have had minimal output, and x-rays show there is minimal fluid accumulation near the chest tube.

So not much by way of huge steps forward or back, but this is the nature of the NICU Waltz--small steps that generally end up going in circles, but slowly making their way from point A to point B.

Serenity: 4 months 1 day (Corrected age: 2 weeks)

Oh wow! I just realized that Serenity turned FOUR months old yesterday! Wow. Four months! What an amazing blessing!!

As for how she is doing, all we know is that she still has fluid building up in the right side of her chest between her lung and ribcage. This is preventing her right lung from being able to function properly. Where we have to be careful is with the ventilator (which she is now back on), and making sure the pressures aren't so high that they cause her good lung to perforate, but still have enough pressure to help the bad lung keep functioning at least somewhat.

Next is her intestines. There is most likely a blockage of some sort. To what degree, we are not sure. We don't know if it's a full blockage, or partial. And there is talk of doing an upper GI in the possible near future to determine the degree of blockage.

Serenity's numbers are now reflecting she has an infection. The doctors are not sure where the infection is coming from, but they are going to give her medicine to try to dry up the fluid in her chest and hope that that is the source of the infection and we will be able to get that under control.

So basically, we are at somewhat of a standstill. We can't really do much of anything until we get the fluid figured out, and until she grows. The doctors and surgeons are now saying that they most likely will not tough her until she is closer to 5 pounds. The downside is, she can't eat, and she isn't growing very quickly on TPN. And what's worse, is they need her to get close to the 5 pound mark by the first of December. Reason being, the surgeons want to send her to Detroit for the surgery for her intestines because there is more support there overall. She most likely will not handle the surgery well, so they want it to be done at the best possible place.

That is all my brain can think of right now. Please be patient with updates. We love that every cares so much and is concerned--we just ask that everyone be considerate of our emotional and mental need to only have to explain all of Serenity's updates once.

Serenity: 17 weeks (Corrected age: 1 week 2 days)

I apologize to everyone for the lack of update. I started to write one, and got distracted, never having completed it. 

To bring everyone up to speed, Serenity ended up needing a chest tube because the fluid in her chest continues to accumulate. As of now, they suspect the fluid to be a result of something called Chylothorax. (If you would like to know more about what that is, I would encourage you to do some research, as I am not completely sure myself what it is, in full.)

Because of the suspected Chylothorax, her feeding has been changed to a special formula called Monogen. The fats in it are different from breast milk and other formula. She seemed to be doing well on it, but as the volume of formula she was getting per hour increased she started having green spit up--a sign that her intestines are blocked again. So, for now, she is not eating. Again. 

One bit of good news, though, is that she is still on the Ram Cannula! And without the help of steroids this time! I am so proud of her! 

Thank you to everyone who has continued to stick through this with us. Thank you all for your continued support, love, and prayers, as always.