The Ball Dropped...

Well, one of my biggest concerns with Zachary happened today, but the Lord took care of us even in this.

I took Zach to our pediatrician for a well check, and during the examination Zach had his first seizure. My fear before today was having Zach at home on my own when that first seizure happened. The Lord was so good to me and allowed Zach to be in the hands of a doctor when it happened!

Zach is at the Toledo Peds ICU. Our doctor decided to admit him because of Zach's so many other issues. An EEG and MRI will be done, so tomorrow will be full of waiting.

We are so thankful that Craig's mom, and my parents were able to take Aaron on such short notice, and all that Aaron knows is that he gets to hang out with some of his favorite people!

Please pray for wisdom for everyone involved in Zach's care.

God is good!

In 3 days, Zach has put on 13 ounces with the NG tube and the higher calorie formula! Our goal was that at a minimum he would gain an ounce a day! Praise the Lord!

Hard to hear...

Zach only gained 2 ounces in the past 6 days. That is less than 1/3 of what he is supposed to gain. The nurse tried to prepare me for the likelihood that an NG tube (feeding tube that goes through the nose into the stomach) will need to be placed. I think sometimes I try to pretend that Zach is "normal". This definitely shatters that. Right now feedings are taking about an hour each time. This is hard on me and Aaron, who unfortunately is watching way more TV than I would like. With the tube in place, feeding time would be cut down considerably. Zach will also be getting the calories that he so desperately needs. Even knowing all this, it is still hard...

Another gift of a Son!

No, we are not pregnant! But coming into this season, I am reminded about another baby that was given to the world. Because of His coming, He will swallow up death forever. This first baby has given hope to my baby. Thank you, Jesus!

Not much has happened in the past few months regarding Zach's care and condition. I have actually felt like a normal mom and all the worries, frustrations, and joys that it brings.

On November 10th we met with the neurologist. No tests were ordered. Essentially his job for Zachary is to help manage the seizures when he begins to have them. We have seen no sign of them yet, and we know that God could choose to intervene. We leave it all in God's hands.

Zachary has been having weekly weight checks for a while now. I have had the privilege of exclusively nursing him for the first 4 months of his life. On the 22nd of November, our meeting with the cardiologist changed that. Zach had slowed down and was gaining less than half the recommended amount for his age. He was still around 10 lbs (depending on what scale you use.) We needed to start supplementing with formula. Easier said then done with a baby who had no interest in changing to a bottle nipple! I was also upset about having to give it up earlier than I'd wanted. It was a hard week and a half but he finally transitioned. I didn't want my baby going hungry, especially because of his weight gain issue. I am still able to pump breastmilk and then add some powdered formula to it to beef up the calories. Again we trust God with Zachary's feeding needs, as they will continually be an issue in his life. We have another weight check today and we are hoping for at least 11 lbs!

The Greatest Hymn of All Time

Dear Zachary,

In the world today, Zach it is easy to despair considering all the calamities, strife, corruption, war, and sickness. Although we see this wax and wane through history, we know that God is in complete control on the macro and micro level.

We understand the scope of His sovereignty, Zach when we read through Psalm 46. God's authority is above all, and we need to stay focused on Him as our source of refuge and strength. Sometimes Daddy despairs in light of what is going on in the world. Sometimes Daddy despairs with challenges we face in life like with your health.

Reminders of hope are good Zach, and we look to the scriptures to stand firm in truths. Daddy appreciates the powerful effects when these truths are put to song like Psalm 46 in the hymn, "A Mighty Fortress is Our God." A song has a way of sticking with you for a time, and when Daddy sings this one in his heart, it's not an idle message that passes away like the wind. Daddy's emotions meet the truths in the words and brings an everlasting smile to his face. God will ensure our security no matter what we face in life.

Daddy does not have much of a singing voice, Zach and when he tries to sing Martin Luther's hymn, it sounds more of a raucous bellow. There will be a time, Zach when we will sing together in triumph. Yes, there will be many songs sung in praise about the victories of our almighty God and His ultimate authority. It is hard to imagine many much greater than Luther's "A Mighty Fortress is Our God" that we sing today. We emphatically sing and give praise to His Name, for His sovereignty, power, and strength. He ensures our security, Zach and we'll be praising His name in song forever.

http://www.youtube.com/watch?v=-Y-_TsRjm5Y&feature=related

Love,

Daddy

Some good news!

Well the past couple of weeks has resulted in some good news for Zach. We met with the neurosurgeon and he is not sure there is a tethered cord. He wants to see him again in February with a better MRI done at that point. It is nice to set that issue aside for at least awhile.

We also met with the cardiologist on Wednesday. Craig and I were fully expecting to begin to discuss specific interventions regarding Zach's heart. We had noticed that Zach's coloring was beginning to change to paler with some blueing around his mouth. We expected his O2 stats to be low 80s maybe even into the 70s. We were amazed when they were even better than the last time we were in the office: mid to upper 90s! Since then his coloring seems to have improved also! That means I have at least another month to help Zach get even bigger. He weighed in at 9lbs 4oz. We are hoping for 10 lbs at his next pediatrician appt in 2 weeks.

Thanks for the prayers! We know God is working and we trust Him!

Waiting for the ball to drop

This is my feeling right now about Zach's situation. It is a hard place to be. Sometimes I find myself throwing a pity party for one, but then I take a deep breath and remind myself that God is in control and I am not. Then I have to remind myself that this is a good thing!

Zach had his 2 month check-up at the pedritrician's office Friday and everything is looking pretty good. We really haven't seen a whole lot of social smiling yet, so we are hoping to start seeing that soon.

Craig and I have also started to notice that Zach's coloring is starting to change slightly. This is to be expected with his heart condition, and is one of the signs that intervention will need to happen sooner than later. We meet with the cardiologist next on the 20th. We are trying to prepare ourselves emotionally for the big decisions that we expect will need to be made regarding Zach's care at that time. *big sigh*

Right now in the quietness of nap time it all doesn't seem real that this is my life. But then the doctor's appointments start up again. And I realize that it is easier to run from appointment to appointment than to sit down and think through what is best for Zach long term.

Well, I am so glad that our appointments are now significantly lessening. Each week now we are having about 1-2 appointments a week, rather than 3-5. I feel now that we are just waiting for heart surgery to happen. I'm guessing it will probably happen sometime near the end of the year. We will be meeting with a neuro surgeon to discuss Zach's probable tethered cord. It does appear to be tethered but hasn't started pulling on his spine yet. This is good news because it means that he is not currently experiencing any pain from it.

Frustration

What a morning! Zach had a scheduled spinal MRI at the hospital, so unfortunately he was not supposed to eat anything from 6 AM until his MRI at 11AM. As a mom, I was not happy about this, but I guess it needed to be done so that he could have the proper sedation meds. So we rode out the storm of a crying boy all morning.

Once we got to the hospital and started to dialogue with the nurse practitioner, I found out that it had not been communicated to them that Zach had a heart issue. This was a big deal because this entirely changes the sedation procedure. My options at this point were to reschedule for another day (AH!! NO!!) or feed him with the goal of making him sleepy enough that he will lay still for it. (I choose door #2, please!)

Before I could feed him they wanted to get an IV ready for the contrast that would be used during the MRI...4 needle pokes later, they finally were successful with a vein on his ankle bone! At this point, I am not doing too well as a mom. I feel that my entire morning was spent with me asking God, "Oh, please let it work this time!"

After feeding Zach, we were finally able to get Zach sleeping for the imaging. He stayed still for most of it, but they were unable to complete the portion of the images where they actually use the contrast. Ug! I am to call the doctor who ordered the MRI later this week to see if the images they obtained will be enough. "Oh, Lord, please let this be enough!"

Oh my...

Good news: Zach's hips seem to be in perfect working order after the ultrasound of them on Monday. (which he hated every minute of, by the way)

Bad news: Zach seems to have a tethered spinal cord. We are scheduling a spinal MRI and then meeting with a pediatric neurosurgeon for, yes, possible surgery near his tailbone to release what is tethered.

*sigh*

Swaddle me for Your sake, Dear God

Dear Zachary,

When Daddy and Mommy swaddle you, Zach we remember how we are swaddled with the promises of hope and love we read in the scriptures. The Lord provides us guidance and protection when we follow Him obediently. This does not mean that we will not go through trials and challenges in life, but we can be assured that they are working together for our good. Sufferings like pain, sickness, injury, disease, and loss will refine our faith, and we must endure and persevere in hope and trust Him all the more! He guides and provides for the sake of His honor, and in Him there is unequivocal power and victory over fallenness in this world and shortcomings we have in ourselves.

Zach, Daddy is going to start to read Psalm 23 to you to help the eloquent words resonate in our minds and shine in our lives. Jesus is the good shepherd, Zach and in His care we do not lack. For it is by His love that there are the green pastures and still waters of restful security in Him. His provision of hope and love for us restores our soul, and we should continue to rest in Him comfortably. We can then feel liberated from the bondage of despair we sometimes feel in life. He will guide us down the right path that leads us to the other side. Even the darkest shadow of death which frightens us with feelings of helplessness is weak in the face of the hope we have in the security of our union with Jesus Christ, our Lord! Death is merely a door leading to eternity with Him! What a hope to remember!!

Zachary Paul, we are seeing these truths tangibly in our lives! Do you see it, Zach? Do you feel it, Zach?! Of course!! Family, friends, coworkers, and even people we have not met have loved us tremendously in these days. People have loved us with kind words and encouragement, letters, cards, hugs, prayers, meals, and other kinds of help, too numerous to count. Oh, how we are grateful for this love. How do we show gratitude for God's provision of putting so many loving people into our lives, Zach? We ourselves aim to be loving people and strive to swaddle others with love just as God first loved us. We do this for Jesus's sake, and give Him all glory for how He has truly blessed us.

Love,

Daddy

Another doctor appointment

Last week on Monday we learned that Zach has mild to moderate hearing loss in his left ear, but his right ear is normal. This seems like such a minor thing compared to Zach's other issues.

On Wednesday, we went to the pediatrician for his one month check up and Zach weighed in at a hefty 7 lbs. 2 ozs! Way to grow, my little man! That puts us officially at the 3rd percentile on the growth charts! The pediatrician was concerned, though, about a click in his hip, so just when I thought we were already seeing as many medical professionals as possible, we are now meeting with the orthopedist. We will be getting an ultrasound of the hip on Monday to see if Zach will need to be fitted with a brace to make sure that his hip is growing correctly.

Just yesterday we had our first time with Physical Therapy. Zach has a tendency to favor leaning his head in one direction when laying down, so we worked on what to do to stretch his neck out. We also are focusing on reducing his back arching.

I look at my calendar for next week and I have an appointment with Zach every day next week! It feels like I am always running with Zach from one appointment to the next...this is my life now, and I need to remind myself that these times are good times to get to know Zach better. It does get tiring, though, when I just want to stay home.

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!