Happy Valentine's Day!!

Happy Valentine's Day to the babies in the NICU and their families. Three years ago, we celebrated Valentine's Day with our son Bentley in the NICU!

This is Bentley NOW, a cute little Valentine Mail Man!

Restless

(This was the first time I got to hold Bentley after his birth- It was at least a week)

Yesterday, I received a phone call from a dear friend that has brought back a flood of memories. It has caused my mind to be restless and prayerful. Yesterday morning, a friend from church gave birth to a baby girl named Adah. Immediately they noticed she was struggling to breathe and called EMS.

Adah has a tear in her lung and the hospital they were at did not have the machines needed to repair this tear. They transported Adah to another hospital last night, to perform a very serious surgery in which the lungs are bypassed and oxygen is put directly into the lungs. Sound familiar? All too familiar. Though we did not have to transport Bentley to another hospital, and the extent of the tear in his lung were fixable through inserting tube to pull out the excess air being leaked out of the hole, it's still close to home! Odd, providence, that we just celebrated Bentley's 3rd birthday last Friday, and I was looking at all the pictures of him in the NICU remembering. Remembering the smells of the hospital, all the beeping, the large machinery, the nurses, the tubes, the doctors, the time. Now, just 4 days later, we have a family in our church going through the "same thing".

I'm having to cool my jets, there are so many things that I want to say! So many things, that I am remembering. One of the things that came to my mind immediately was all the animosity towards those who chose to birth outside of a hospital. Every time I walked through the NICU doors I felt it. We were the gossip at the nurses station-- it's true, a year later at a OB appointment for Marseille they told me so. I questioned our choices by the comments and the looks on family members faces. These things were just as hard to endure as not having Bentley with me.

My heart is heavy for Jennifer. So many emotions and thoughts that I had when Bentley was born have become so much clearer now. I'm praying for all of them, for healing, but so much more for peace and grace. I know that all of them will come. God is so good. Even if Adah were to leave this earth and be with God, that is healing. As I continue to have a restless mind, I have a peace because He will take care of them so much more than my thoughts and words can.

BMW is joy.

Photo from: http://www.bimmerfile.com/2010/02/

Danny and I recently took a tour of a BMW plant, while we were amazed at their efficiency and what man can do (create robots to make cars!) I was taken aback by the statement that they had posted: BMW is joy.

As it probably is true, that driving a BMW is joyful. I’d take one! I felt like it was a bold statement. However, there was another sign in the building that said Joy is powerful. Yes, I thought, yes it is!

What brings joy to your life? Your husbands kisses, your children’s laughter, giving someone an unexpected present? How about when things aren’t going your way and someone else is joyful about something, then how do you feel? Do you share in their joy or do you have a tinge of jealousy? You see, joy is powerful. It can either bring you life or destroy you.

I recently went through a season where my lack of joy was destroying me. I was jealous of what seemed like everything. I was jealous of those announcing that they were expecting, while I knew and was at peace with the fact that I couldn’t have anymore, jealous of those whose children were healthy, jealous of the pictures people had of their families, jealous of the husbands of friends who did such special things for them. It was getting ugly and petty. Thankfully, God was at work, the GirlTalk blog, a blog that I frequent, was beginning a series on envy and I was convicted. As I worked though the series, I realized the lack of joy and gratefulness that I had and how sinful I was being. Upon my conviction, I closed my facebook account because I realized that I wasted too much time in front of it and just how much that it feed my envy. Then, I began to pray for those I was jealous of.

God worked in me and quickly. In those months of seeking change in this area God showed me true joy and gave me genuine excitement for others joy. God has given me lasting joy. As I reflect on the cross and what He has done for me, I can’t help but have joy. My sins are forgiven and I will live in eternity with Him. I gave into the power of joy and it gave me life.

You have put more joy in my heart than they have when their grain and wine abound.

–Psalm 4:7

So thanks, BMW for the great reminder!

She laughs at the time to come...

This was Aug 2010
Well, if you had seen me the past few days you'd think I was a chicken with my head cut off. I feel like this week started and ran away from me!

Monday was a relatively normal day, with planning for the week!

Tuesday: afternoon appointment at the Peds office. CLEAR! Good news.

Wednesday: Sewing lessons, afternoon Nephrology appointment, running around to different pharmacies to fill Rx.

Thursday: Went to one pharmacy-- given wrong info, went to the other side of town. They can fill it but it won't be ready until 3:00PM--- it's 10AM! OKAY, do a couple of errands, and sewing lessons. Then my Dr. appointment for my shoulder. Get home, eat dinner and go to a quick photo shoot!

Friday: Marseille's photo shoot. Minute clinic for a UTI, then grocery shopping. Whew!

It has been a busy week, but God has been encouraging us so much through our care group! We love them so much and are so grateful for them!

Well, here is the deal with my shoulder. Just before I was pregnant with Bentley, I got a spasm in my shoulder. It wasn't too bad, but it was a constant tick. Then it sort of went away in between pregnancies and then came back worse with Marseille. Since then it gets bad only when I work it too hard. About a month ago, I was massaging my neck and shoulders and notice a REALLY hard large knot in my left shoulder. I had Danny feel it and he wanted me to get it check out. By the time I finally had a chance to get it check out, Bentley and Marseille got sick (the wheezing and ear infections!) and I put it on hold until they got better.

So, I finally got to the Dr. yesterday. I told him about the knot and he thought I should get a CT scan, so that way he could better tell what exactly it is and where to direct me. At first he wanted to refer me to a general surgeon, but he brought in another Dr. and he looked at it and say it definitely is something that needs to be looked into and taken care of. His exact words, "Whoa, that is really hard bro!"

The mass is hard and about the size of a golf ball. It's tender to the touch and even more so now because people have been poking around at it. Otherwise, the actual mass doesn't hurt, but my neck, collar bone and back are very sore. When I lift my arm it feels like my circulation is being cut off in my arm to my hand. It's not really pleasant trying to care for two small children with my arm being out of commission.

I'm really hoping and praying that the CT scan will show what it is. I was really hoping that it was just that my muscle was in a knot and I was going to need physical therapy, but it's looking like surgery is going to be my option.

When I left the appointment and sat down in the car, my eyes welling with tears, I thought, "Really God, I feel like you are crushing me. I'm not sure why all these things are happening at once. I know that you are good, but I'm struggling right now." I really wasn't struggling with the fact that there is something wrong or that I have to have surgery. I was struggling with the inconvenience of it all. How am I going to take care of my family, how am I going to run the half marathon that I paid for, how am I going to remember to give Bentley and Marseille their medicine everyday twice a day, how am I going to be in a wedding, how, how, how? I stopped thinking, put on "Come Weary Saints" and cried.

He offers the peace that you yearn to know

Hide away in the love of Jesus.

My life is not peaceful right now, but I have peace with God and that is more important than any trial in my life.

After I regained composure, I called Danny to let him know the results, which were not much! He immediately encouraged me and asked if I was okay with everything. I was so grateful and I was okay, esp. since he asked.

My CT scan is scheduled for Tuesday 8/24, if you think about it please pray that they find exactly what it is and they know what to do about it and even that God would heal me!

Well, all I can do is laugh (and cry) at our current situation! I have today and am not guaranteed tomorrow. Another thing that I'm really grateful about is that we already have our vacation set up. We might not have taken it with all that has been going on!

This is my verse: Psalm 119:67

Before I was afflicted I went astray,
but now I keep your word.

The more God uses suffering and affliction, the more I speak truth to myself, and I couldn't be more grateful!

Every Day

By Joel Sczebel and Todd Twining
As recorded on Come Weary Saints

In Your grace, You know where I walk
You know when I fall
You know all my ways
In Your love, I know You allow
What I cannot grasp
To bring You praise

Thank You for the trials

For the fire, for the pain

Thank You for the strength

Knowing You have ordained

Every day

Your great power is shown when I’m weak
You help me to see
Your love in this place
Perfect peace is filling my mind
And drawing my heart
To praise You again

In my uncertainty, Your Word is all I need
To know You’re with me every day (repeat)

© 2008 Sovereign Grace Worship (ASCAP)/Sovereign Grace Praise (BMI)

Do you ever ask why?

While laying in the hospital bed, with no baby beside me, I wondered why. Why to me, Lord? I would rack my brain wondering what I had done to cause such suffering. Thankfully, those thoughts lasted but moments. I knew the truth and I had to speak it to my soul! God doesn’t work like that I would remind myself, and He tells us that the suffering in our lives produces character.

 The first few days Bentley was in the NICU and I was in my hospital room, we would have visitors, likewise there were times that I would be by myself. I clearly remember the night the pastors of our local church came by to comfort and pray for us. Though I don’t remember all that was said, I do remember the looks on their faces. They were looks of genuine concern for us. Making sure that we were okay, and also that our souls were okay. I’m grateful that our senior pastor quickly talked about death and that if Bentley died it wouldn't be the end of our world. Then he said, “There, we've thought about it, now let’s move on.” These words were kind and loving. Our church had just gone through a series on 1 Peter, this series prepared Danny and my souls for our current trial.

“Beloved, do not be surprised at the fiery trial when it comes upon you to test you, as though something strange were happening to you.” 1 Peter 4:12

“Therefore let those who suffer according to God's will entrust their souls to a faithful Creator while doing good.” 1 Peter 4:19

 “And after you have suffered a little while, the God of all grace, who has called you to his eternal glory in Christ, will himself restore, confirm, strengthen, and establish you. To him be the dominion forever and ever. Amen.” 1 Peter 5:10-11

There was another evening, that I clearly remember but this time I was alone. It felt good considering all the thoughts that were swirling around in my head, plus all the family that was trying to comfort me. I put on my iPod and decided to listen to some worship music to help my soul not to wander. The song that came on was one of my favorites, but was hard to listen to as I was faced with living out the song’s words. Count it all Joy. As I listened, the tears wouldn’t stop. Everything in my body resisted wanting to sing the song. As the song continued on I had to stop listening. I didn’t count it a joy then, and I couldn’t sing the words.

A few days later, I was sent home while Bentley continued his stay in the NICU. The following Sunday we had the opportunity to attend our church’s Sunday morning meeting. God gave me another opportunity to show my faith. This time is was a hymn. The hymn It Is Well With My Soul began and Danny and I looked at each other. Knowing that this was going to be hard, Danny pulled me close and we began to sing.

Hands raised, tears streaming, we worshiped our God because it is well our souls. My greatest need has been taken care of at the cross. It didn't change the fain I felt during my suffering, but it changes my perspective. In light of my sin, there is a hug gap between me and God and now and God. Jesus closed that gap and now I have peace with God. No amount of suffering on this momentary earth can take away my eternal peace. When this world passes away I can be with God. Sorrows and suffering produces faith. 

"In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, so that the tested genuineness of your faith—more precious than gold that perishes though it is tested by fire—may be found to result in praise and glory and honor at the revelation of Jesus Christ." 1 Peter 1:7

It would have been sad if Bentley had died, but that is not my greatest problem. My sin before God is my greatest problem and Jesus took care of that. Remembering that it is well with my soul causes me not to ask why, but to give thanks! This applies to our current situation, we now know that both of our children have PKD and yet I don't feel the need to ask why. I trust God. He will give me the grace, strength, peace and joy to care for the little ones He has blessed me with!

A Gift for You

If you received a card from us today when you went in to your appointment and are now looking at this post, I am honored! The reason why your child was given the card and some stickers is simple: we want to share our joy and peace. This is a way that we can serve your family while you find yourselves in similar circumstances. And yes, I really did pray for you and your child!

The scripture quoted in the card is one of my favorites. I know what it's like to have appointment after appointment wondering when I'm going to hear some good news.  When I lift up my anxiety to the Lord, He gives me peace. Eternal peace, I have peace with God and that alone gives me peace about my current circumstances.

Our Story- The Quick Version

My husband, Danny, and I met 6 years ago through mutual friends at our campus ministry. We never imagined that one day God would give us the unique privilege of parenting 2 very special children.

Let me introduce you to Bentley (2) and Marseille (1). We decided to do a home birth with Bentley due to my fear of hospitals and needles. We welcomed him into our family on February 2, 2008. We immediately noticed that he was having trouble breathing, so we were promptly transported to the hospital and received the disturbing news that they weren't sure he was going to make it.

We soon found out that Bentley was born with a hole in his lung. The doctors spent hours trying to stabilize him and weren't sure that their efforts would pay off. We were finally able to see him the next morning. It was really hard to see our small baby boy hooked up to so many machines. After a month in the NICU and many ups and downs, Bentley was discharged and we were so grateful.

His first year of life was filled with many check-ups but by God's grace Bentley progressed normally. When Bentley was 9 months old we found out we were pregnant again. We were so excited! We had no idea that in just a few months we would find out some more news. At Bentley's 1-year-old check-up, the doctor felt like Bentley's liver was enlarged. The doctor wanted us to reschedule Bentley's 1-year-old check-up with his pediatrician. The pediatrician ordered an ultrasound and the results were less than pleasant. Bentley's kidneys were enlarged and had microscopic cysts all over them. His umbilical cord vein had reopened and was draining blood from his liver.

We ended up meeting with a gastroenterologist and nephrologist right away. Bentley's blood work for his kidney function was stable. We told the nephrologist that we were expecting and he told us to make sure we followed the baby's progress closely.

We soon found out that we were having a girl and we were very excited. Marseille's pregnancy was filled with many appointments. Appointments for her and for Bentley. Thankfully, Marseille's ultrasounds came back normal every time.

Shortly after Marseille's birth, which was quick and normal, we had genetic testing done on Bentley, Danny, and myself. It came back telling us that Bentley has Recessive Polycystic Kidney Disease, and that Danny and I both carry the recessive gene for this disease, which means there is a 1 in 4 (25%) chance that each one of our children will get the disease. Not a month later at Marseille's 6 month well check, the pediatrician could feel her kidneys suggesting that they might be enlarged. Given the family history, she ordered an ultrasound. As soon as the technician started the ultrasound, I saw the cysts and that Marseille's liver wasn't smooth. The tech wouldn't give me any details, but I already knew what the diagnosis was going to be. Sure enough, our baby girl was diagnosed with PKD as well.

Despite the fact that it is hard to have children who have diseases, we see the sovereignty of God in our situation. We see how God has worked from the beginning. God spared Bentley's life at birth because 30% of babies with PKD die at birth. We found out that we were pregnant and having a girl before we found out that Bentley had PKD. What a kindness! We have boy and a girl, which is great considering we won't be having anymore children given the risk. Danny and I found out our genetic testing results before Marseille's ultrasound, which softened the blow of her having PKD, as well.

We are fearfully and wonderfully made--believe it or not this disease has made that more real to us than ever. God created 2 little genes in 2 different people that would at some point come together and activate this disease...that is amazing!

What does it look like for daily life? Well, we take it one day at a time. There is no "cure" for the disease.Transplants of the kidney and liver is the closest fix. So, both children are monitored by a nephrologist, gastroenterologist, bood work, and ultrasounds. They are looking for kidney failure because nothing can be done medically until the kidneys begin to fail. You may think that sounds awful, but really none of us are guaranteed tomorrow. Therefore, we should all take it one day at a time, thanking God that he has given us one more day together. God hasn't given me a peace about researching the disease beyond what I need to know, probably because I am prone to worry. “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.” Matthew 6.34 If I know too much I will worry away what precious time God has given me with them TODAY!

It would be wonderful if Bentley and Marseille could be healed on this earth through a miracle or medical intervention. But, what is most important to us is their salvation. Our deepest desire is for God to save their souls, because He will heal them instantly in Heaven for eternity. “He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” Revelation 21.4. Praise God that we have hope and can stand on His promises!