News from Friday's Cardiology Appointment

Our Friday appointment went well. Nothing clinically significant has changed with Zach's heart condition since we were discharged from NICU 2 weeks ago. We meet again with our Peds Cardiologist in a month and go from there. One day at a time!

We want to sincerely thank the many, many people who are holding us up in prayer and blessing us with meals. The love you've shown us has been such an immense blessing. It reminds us to be quick to share love with others who are also going through trials in life.

Zechariah: Penultimate Book, Ultimate Hope & Joy!

Dear Zachary,

When I think about your name, Zach, it brings incredible joy to my heart. You are helping Daddy stand firm in the scriptures like in the second to last Old Testament book, Zechariah. We rejoice greatly and marvel in Zechariah 9:9-10. Zach, your namesake prophesied the triumphant and victorious entry of Jesus into Jerusalem 500 years before it took place! Jesus, whose dominion is from sea to sea and to the ends of the Earth, rode into Jerusalem on a young donkey with peace and meekness about 1980 years ago. Zach, Jesus was afflicted, beaten, and put to death, but God meant this for good! Death did not ultimately conquer Him, Zach. Quite the contrary! He rose triumphantly from the dead and now reigns in heaven! This is our King, Zach and our ultimate treasure, hope, and joy! Because He rose, we can have peace with God. What is this peace? Zach, we live in a fallen world, and we have shortcomings in ourselves. Not Christ, though. Because He did not sin, Zach He can be our righteous substitute. He restores peace between us and God, and we can be with Him forever! What a hope to remember! Shall we also then, rejoice greatly and shout for joy?!!

Love,

Daddy

Praise!

The home nurse came today and Zach weighs an astonishing 6 lbs. 3 oz.! Praise the Lord that nursing is going so well and he is growing! We haven't had to supplement at all since we've been home. We will meet with the cardiologist on Friday. We trust the Lord with this appointment.

A Hope to Remember in Psalm 103

Dear Zachary,

Daddy always finds joy in meditating on Psalm 103. Zach, God has established His throne in the heavens, and His Kingdom rules over all. We give praise to the Lord for all His workings within his entire realm of rule, which is everywhere. When trials come in life, this tests our faith. Let us not presume we understand everything about Him. We know His Name is set apart and infinitely good. We delight in God. We hope in God. We will trust Him, and we need to seek Him in everything. How high is His steadfast love towards us? How far removed is our sin? Have we too quickly forgotten all His benefits?! Of course we have not forgotten! This is hope to remember! With all that is within us, let us then give praise to His holy name.

Love,

Daddy

Rejoice in Hope, Be Patient in Tribulation, Be Constant in Prayer

Dear Zachary,

Genetic testing shows that you have Miller-Dieker Syndrome (MDS), and this explains your lissencephaly and Tetralogy of Fallot. Zach, we likely have some very challenging times ahead. Let's not be anxious about the challenges tomorrow might bring, but rejoice in hope!! Through these times of tribulation, we have hope and that is Jesus Christ!! Zach, we are united with Christ, and this news brings us incredible joy!! Your future redemption will be even sweeter for you. Zach, nobody gets through life without tribulation. It's like the pestilence of old. So, trials are coming in life. We just don't know when we will experience them. Let's not worry about tomorrow and be patient in these days, seeking God constantly and earnestly in prayer. We will ask Him for guidance, peace, strength, and perseverance. We will take comfort knowing that He is listening.

Love,

Daddy

Blessings

I am so thankful to have a wonderful husband with whom I can share everything. I don't know how many times over the past week and a half that I've shared my thoughts (good, bad, and ugly) with him, only to find out that he has been having and struggling with the same ones! May the Lord strengthen our marriage as we walk this life together!

Home!

Yeah! 3/4 of our family is back home together! Zachary was discharged from the hospital today, and Aaron will join us tomorrow!

My Refuge and My Fortress!

Dear Zachary,

Daddy is not so melancholy as in past days. I am finding my source of strength in the scriptures. Daddy is using the scriptures as a sword to put to death temptations of lack of faith and despair. Zach, we are grateful for Pastor Carey's prayer last Thursday. He helped us find strength in Psalm 91. God is our refuge, Zach and these "ills" may seem like they have befallen us, but ultimately will not conquer us. God will ultimately redeem you, Zach as he is sovereign over all and nothing will separate you from the love of God in Christ Jesus, our Lord. This is a hope to remember!! Daddy will use Psalm 91 to preach to ourselves because sometimes it is so easy to fret. Remember this hope little boy!

Love,

Daddy

Comic Relief

I'm learning how big an influence we as parents have in Zachary's care.

Example 1: Zach has had a feeding tube in his nose as a back up if he wouldn't take his feeds orally. On Tuesday, the nurses kept asking me when I would be willing to give up the his safety net of the NG tube. I had no idea that they were waiting on my go ahead to remove the tube!

Example 2: Yesterday, one of Zach's neonatologists came in Zach's room and asked us, "Why did you order a vision screening on Zachary!" What!? I mean I know Craig and I were shown Zach's brain MRI, so clearly we should have known better! We couldn't help but smile... if Craig and I had only known that we could write orders for Zach's care!

We have been really impressed by Zach's care here in the NICU and are enjoying those funny miscommunications that will happen with such a large team working together for Zachary's care.

A Hope to Remember

Dear Zachary,

You are truly a beautiful baby boy. Daddy's soul is a little downcast, and he feels discouraged at the news of your health these past few days. But, Daddy loves you so much for who you are ... a true gift from God! Thank you for reminding Daddy to meditate on the Psalms for comfort and to help deal with his emotions. He relates well to the psalmist in Psalm 42. In life Zach, sometimes we question, "Where is God?" and feel like he has forsaken us. He has not. Indeed, He has not. He walks beside us in hardship and carries us through all trials. In His care, Zach, we will not lack. Hope in God! We will praise His name. We will remember the promises God has in store for us. This is a hope to remember!! He will work all things together for good! In time, we will remember these days of hope, and see that God helped us with temptations of despair. In this time, we hope to remember every minute of each day that God is good. He is faithful. We will trust Him.

Love,

Daddy

Zachary's Hope

Zachary's Tetralogy of Fallot didn't really scare me too much because he has only mild pulmonary valve stenosis, and surgery should definitely fix him. Then the stinger of news ... Lissencephaly. I can't think of worse news we could have received from his brain MRI. Oh, the pain I feel as a father, and I certainly have had times of groaning.

I think there is something special about a father's love for his sons. On occasion, I'll ask Aaron, "How much does Daddy love Aaron? How much? How much?!!" Aaron responds by taking his arms back as wide as possible to show me just how much. What's funny is I can keep asking him "How much, how much?!!" and he keeps showing me. I cannot wait until the day I can explain to Aaron really how much his daddy loves him that he might understand.

I may never get that chance with Zachary, but I know who will tell him how much he is loved. This is Zachary's hope. That as sin entered the world through one man and things were then subject to decay, Zachary's hope is the redemption of his body and spending eternity with God who loves him more than he can ever know. Through Jesus Christ, we can look ahead to his hope and that is the remedy of my current sorrows. So, we can groan together inwardly as we wait for him to be made whole one day. In the meantime, Zechariah Paul (daddy is the only one allowed to call him this), let your life go on display, pointing to the Gospel and may your parents keep the hope & faith and help you reach your maximum potential in this life.

We received good news today! Hopefully Zach may be discharged within a few days! As long as his feedings continue to go well. He is currently able to take all of his feedings orally, now he just needs to be gaining weight! Grow, Zach, grow!

Zach's occupational therapist has been so encouraging, giving us tips for helping Zach feed, and helping getting hooked up with other resources once Zach is discharged.

All docs and staff have continually said to us to treat Zach as if he is a normal child and let him show us where he is going to need extra attention. Lord, help!

Home Again

It does not feel right to leave the hospital without your baby. I know that Zach is being very well taken care of, but he needs to be with me! Also going home and seeing all of Aaron's toys reminded me of how much I miss him too. But I know that he is being loved to pieces by all three grandparents. Still it was rough.

Quick Recap

Just for a quick overview of what Zach will be dealing with medically:

1. Tetralogy of Fallot - a heart condition which hopefully will be surgically repaired within the next 6 months. We have known about this for several months and had emotionally adjusted to the idea of needing open heart surgery.

2. Lissencephaly - a brain condition in which Zach's brain stopped developing at about week 22 of the pregnancy. We just found this out on Saturday, July 31st. It is still really tough to even think about. I think that I'm just focusing on Zach now and not thinking about the future too much. God let me have him today and for that I am very thankful.

Remembered by God

Welcome to the place where the Bogners will be sharing and meditating on what God is doing in the lives. I (Stephanie) was spending time today thinking about the meaning of Zachary's name, Remembered by God. It was such an encouragement to me to be reminded that never will Zachary be forgotten by the Almighty. He will always be in His Hands. Thank you to so many of you who are continually bringing our family to the throne of our Father in heaven. It means more to us then you will ever know! Zach doesn't always enjoy being swaddled and took advantage of the time to spread out! May I learn to relax in the arms of our Creator also!