Friday, September 26, 2014

5 months old!


To think you're five months old is mind boggling. We have been blessed to watch a miracle unfold with you growing and thriving right before our eyes! I haven't been able to update your prayer warriors because life at home is a bit crazy!

You are a spoiled little guy! :-) You sleep best when someone is holding you. You've given mommy many sleepless nights. When you do manage to succumb to sleep your monitor decides to go bonkers... makes for extremely long nights. I'm hoping to talk your doctor into ditching this crazy monitor your on and just getting you on a pulseox. Wish me luck!

You are a growing boy! 8lbs 7oz!

I still have many moments of fear and doubt. Sometimes you begin breathing hard, fast, and retract. I then panic....  are you aspirating? Do you have reflux? Are you working to hard? These are questions that take over my mind every day.  When these weird breathing moments happen it's typically due to you having a clogged up nose. I bought a nose frida (the grossest looking contraption on planet earth) and it works marvelous!! I want to buy every mom one of these things it's 10x better than a bulb syringe. I use the nose frida on you and get the biggest boogers out, and you can then breathe easy again.

Everyday (minus weekends) since you've been home we've had a doctor's appointment or therapist over at our home. Now factor in construction on our home, and well.... it's a bit stressful. At one point we had your therapist, a nurse, mom, dad and 6 kids in one bedroom, because the house was being painted and flooring installed. That was a bit much. While I respect what they do. I really don't know how necessary it is right now. They seem to be grasping for problems that really aren't there. For example, one day your physical therapist wanted you laying more on your left side because your right ear was "off placed". So the next few days I lay you on your left side. Then a new therapist comes out and says the opposite, now you should use your right side. Ha. Don't even get me started on the nurse. She's a sweetheart, but only comes out and weighs you then leaves. $1400 for a weigh in session is bit much in my book. As you can see I'm a bit annoyed with all our visitors.  Praying we find a new balance!

You had an eye appointment that went great. Your eyes are healed from ROP Disease! Praise the Lord! Now you just need to follow-up in 3 weeks to make sure your blood vessels continue to grow.

I can't even begin to tell you how many doctors, nurses and therapist have called you "she". I usually just let it slide, but lately I've been getting a little snarky about it.  Your eye doctor called you a she... and I said "it's like Ezra, from the Bible." He said he'll have to look it up. I said "HE HAS HIS OWN BOOK!"  Your doctor is such a nice man, I was just giving him a hard time. But I think he felt bad about it. He kept on holding my hand and saying how blessed I am. :-)

We love your name! God placed it in my heart weeks before you were born. It's perfect, in this unperfect world! And it's not a girls name!!!

Love you to the moon and back!


Monday, September 15, 2014


It has been 6 days since you've come home! I'm so thankful you are here with us. My heart melts each time I lay eyes on your face. Sure, nights are long and pretty much sleepless but I will never complain because I get to spend them with you!
You are 8lbs now! The doctor wanted me to finish off your supplement, but I didn't! Mommy knew you'd grow just fine on God's perfect formula! Just today your occupational therapist said in all her years shes NEVER seen a baby born this early being exclusively nursed this soon. Well now today she has. Every.Single. feeding you nurse! Something I was told many months ago you'd never do!!!!! It hasn't been easy, and many times I've wanted to throw in the towel. But I didn't because that still small voice said to keep trying. One day I pray you'll listen to that voice of the spirit and follow through.

Your occupational therapist said for being 1 month corrected age, you look great! No red flags. She also said you have a nice head. If I had a dollar for every time a medical person commented on your head shape, I'd be rich! :-)

There are so many blessings we see and hear daily! It's an overwhelming joy feeling that brings me to my knees. I thank God for sparing your life! I beg God to guide me with the upcoming medical decisions we face. I've never been one to follow mainstream medical advice, nor be scared into certain treatments. But with your fragile body I'm scared out of my mind!

It takes both mom and daddy to manage switching out your nasal cannula. Your poor nostrils are so red and irritated. You scream when we have to put them back in. It gets clogged with bugers easily, and then you can't get the oxygen you require. It's always a panic feeling having to maneuver hastily so you don't turn blue. I got four weeks to be able to get comfortable caring for you alone. Right now I have daddy as a backup. When things don't go smooth I usually have a good cry, and daddy picks me back up and we continue on. 

We love you to pieces and pray your lungs are on the fast track to recovery. They say love heals!


Thursday, September 11, 2014

First Night


Where to start?? Your first night home was a bit intense but such a blessing. I think I got 15 minutes of total sleep. While you did great, waking only every 2 hours to eat, your monitor beeped all night long. This device is as loud as a fire alarm! I'm thankful for the alarm because even though it gives lots of false readings it does alert me when you decide to periodically take a large pause in breathing.

We had oxygen set up in our home. I'm still trying to get used to all this equipment. You are tethered to a 7ft radius due to all the wires and tubing. If we want to move you to a different room, we have to disconnect your oxygen and reconnect it to a new tank. While that seems like no big deal, it's caused mommy lots of tears, because you need that oxygen. Even if it's only 10 seconds disconnected you're saturation plummets. I feel like I need six sets of hands. Two to hold you down, and two to replace your sensors, leads and nasal cannulas, and one hand to hold your pacifer in. Ha! Daddy has 4 weeks off to help, which I'm so thankful for.

You have a home nurse who comes out weekly. A physical therapist and occupational therapist who will come to the home to work with you. And a handful of doctors you'll see over the course of a few weeks (pulmonology, opthamology, developmental, and pediatrician).

You're nursing great, taking a few bottles too and peeing like a champ. Poop is a different story. Let's just say prayers are in to get "things" moving because it's been over 48 hours and you're a bit crabby about it.

What a blessing it is to have you home. Your brothers and sister can't get enough of you. They love you to pieces!

I hope to get comfortable with all this equipment soon!


Tuesday, September 9, 2014

Welcome Home

Hallelujah! The doctors felt you were safe to come home today! So now we begin our new journey! I have so much to write but will save it for another day. Right now I'm just soaking every inch of you up! :-)

After 137 days our miracle comes home! Thank you, Jesus!

This will be our first night together!!! 



P.s. our amazing neighbors made you a welcome home sign! So sweet! :-)

That Didn't go as Planned :-(

Oh Sweet Child,
How I wish this night would've went better. My heart aches to have to think about you not being able to come home today. It's 3am and I just left to go home. I've been stressed all night because starting at 8pm you didn't want to eat your bottle. You just gagged and choked, then cried. I just didn't understand what was going on. All day you ate your bottles, just didn't make sense. We had the doctor come in and look you over. He thought maybe you were getting sick, or you possibly had thrush. All your blood work came back normal. So he started you on a medication for your thrush. About 15 minutes later you dropped your heartrate into the 70s! You recovered just fine. Then 11pm rolls around and we try to feed you again. Nope, weren't having it. Just cried and cried. We then realized the nutritionists changed your supplement. (I'm pretty sure they hate me! There's no other explanation on why they would change this hours before discharge!) This new supplement started at your 8pm feeding. I asked to nurse you instead. You nursed perfectly! So we concluded you don't like the taste of that supplement! Now I'm a nervous wreck that you can't come home tomorrow. Your heart rate is hoovering so low, you're on a new medication for thrush. We have so much going against us now. Apparently the Lord thinks I'm stronger than I am because I am loosing it. Feels like I got the best gift only to be ripped away. I can't believe how hard Satan is working to keep you from coming home. You must be one special boy the Lord had raised up for His kingdom!

We surrender all to the Lord. I want you to come home, but I also want you to be healthy and safe. We will wait upon the Lord for that time. But my heart still aches.

Love you more than you know!

Monday, September 8, 2014

Tomorrow You Come Home!!!!!

We are over the moon excited to get the news that you'll be discharged tomorrow!!!  Praise the Lord! These are the moments we've been anticipating for months!

Today was filled with lots of cleaning, laundry and training. I learned how to give you your nebulizer treatment. How to handle your oxygen equipment and monitors.

We are all set!  Be a good boy tonight so we can head home together tomorrow!


Sunday, September 7, 2014

Giving Heals The Soul

Sweet boy,

We spent the day surrounded with people who have been praying for you. It was so refreshing to see smiling, familiar faces. Our close friends threw a fundraiser to help our family. There was frozen yogurt, facepainting, and a magic show. Such a blessing of much needed fun! We are so humbled that our friends would take the time and effort to organize such an event. Giving heals the soul. The days when I felt the most despair it was the simple text, comment, cards, and prayers that got me through. From the bottom of my heart I thank those saints. Your work and efforts will be rewarded with eternal life!!! For those that stopped by the fundraiser, thank you! It means more than you'll ever know!
Ezra, you are a very special boy that has an amazing team of warriors covering you in prayer. Those warriors filled out stars to hang in your room. When you are old enough to read those stars, I pray you will be ready to give and bless others, just like Jesus did.

Love you to the moon and back!

Almost There!

Sweet boy,

We are almost there! You were switched over to "home flow nasal cannula"and you passed your car seat test! We have to wait till Monday when we can get our home set up with oxygen equipment and monitors. Once that's done you'll be discharged! Doctor said to plan on sometime this week! We couldn't be more excited! Just praying everything can get coordinated on Monday and you have no setbacks.

Praise the Lord! This hospital journey is almost over!


Thursday, September 4, 2014

Surgery is Done

Surgery is done and you are back to your room on nasal cannula. Praise the Lord!

You have a rather large incision running across your tummy. We pray for fast healing! You are in a lot of pain, which breaks my heart. I wish I could take it all away.  May God bless you with a restful peaceful night after all you've been through.

The road to home just got shorter!



Surgery Begins

Off to surgery you go. A bit later than we were told. I think I'm more nervous than you are. You slept all morning and early afternoon. Then when we had to say our goodbye you really started crying. You looked so cute in your hospital newborn shirt and hospital blanket. I miss you already buddy. I hate sitting here in the unknown. I couldn't have prayed for a better anesthesiologist. He adjusted his original plan because mommy's so worried about your lungs. He's gonna do his best to bring you back breathing on your own. We leave everything in Gods hands. He knows our hearts, He hears our cry and He's with both you and I right now. We pray we leave off right where we left with breathing and eating.

The Lord is my light and my salvation whom shall I fear? The Lord is the strength of my life whom shall I be afraid? Ps 27:1

Wednesday, September 3, 2014

Surgery tomorrow!

Surgery is set for tomorrow at 12:30. Still working out all the details. We have specific things we are praying for.

1. No intubation required. We pray the anesthesiologist would be able to do a spinal block and get you comfortable without having to put you to sleep with a breathing tube.

2. God would Guide the surgeons hands.

3. You would remain comfortable, and relatively pain free.

4. Recovery would be a breeze and you could continue on eating and breathing without any set backs.

We leave everything in Gods hands. We love you and pray you'll be much happier post surgery.


P.s this was your face when I told you that you needed surgery....

Tuesday, September 2, 2014

You Nursed!!!


God knew just what mommy needed today. When your nurse, Hailey, arrived she asked if I wanted to try nursing you. I was shocked! Of course I did! I've been waiting 4 long months for this bonding opportunity! But, secretly I was nervous. The lactation consultants told me I would need to use a shield, because you were a micropreemie, and that it could take months for you to figure it out. Boy were they wrong! You did great! Like we've done this a million times! I'm over the moon and for the first day I feel you are truly mine. All these weeks I knew you were my child but my heart ached for more. I could only hold you so much, feed from a bottle but still something was missing. Tonight the puzzle piece fits in the missing spot and I'm healed! I'm so thankful I am blessed to be your mommy. God could've chosen anyone, but He chose me. Thank you Jesus!


P.s. We are still waiting on a surgery date.

Orang Leaf Sunday Sept 7

When looking back at these past 5 months of hospital bed rest to our continued NICU journey, I know we have been carried through and provided for. Generous saints have stepped up and blessed our family with prayers, meals, gas cards and more! The stress of this journey alone has done me in, so I try not to focus on the financial burdens at all. We joke that Ezra is a multi-millionaire because that's how much his care has cost. :-)
Two special families that are dear to our hearts, The Smits and Dewinds are putting a fundraiser on for our family on Sunday, September 7. You can stop by the Orange Leaf location in Holland from 1-10pm. In the evening (6-9pm) they'll have fun things for the kids to do. We would love to meet you there and personally thank you for the prayers and support. This momma has highs and lows and I'm so thankful for the outpouring of love that carries me through!



Monday, September 1, 2014

128 days!

Sweet boy,

I think mommy finally hit the wall of desperation yesterday. I heard from other NICU moms `there will come a point in your journey where you'll just be fed up and done with the hospital`. After 128 days I'm just tired and want this over. I absolutely hate leaving your side. I hate the 2 hour car rides. I hate being separated as a family. This stinks and I want you home. Doctors no longer call and update mom. When I have a question, they won't even come talk to me. They'll relay back "it's the weekend and we don't talk to parents on the weekend." So apparently you can be uncomfortable on the weekend and nothing will be done. Ugh! Like I said, I'm sick of this place! I think you're sick of it too. Thru a phone tree I heard they will discuss surgery on Tuesday, hopefully getting you in by the end of the week. Let's pray it's true!

On a happier note, you are 7lb 8oz! 19inches long! When talking about your age we now say "you are 3 weeks adjusted" because you are 3 weeks past your due date. Even though you are 4 1/2 months old, you are truly only a newborn.  You are unrestricted with your bottle feedings! In the last 24 hours you have taken 6 full bottles and 2 half bottles. Once you reach full bottles for 48hrs, surgery done, and still on nasal cannula we can check outta here!!!!

We plead we only have days left here, not weeks! I love seeing your progress, and how far you have come! What a miracle you are!

Keep fighting! Love you!