Painful Weekend

There are moments when I still get angry at God. While I realize an enemy has done this, I believe God can ease the burden and make this trial easier to handle. I'm totally failing this test of faith. There's not a minute my hearts not divided. When I'm with your brothers and sister I call to hear you screaming in the background. Truly heartwrenching to feel like I'm constantly failing. I get angry and ask why me? I can hardly hold a conversation with others because I feel deep down they don't understand the pain I feel when leaving your child behind. I know many moms have tread these waters before, and I have no right to throw my fits. But I do anyways. I hate this! I just want you home! Where I don't have to be diveded anymore. I don't have to sit awake at night hoping your not screaming all alone. Today is a day I feel abandoned by the Lord.  As I sit here you are crying in pain. I can hear your hernia making noises and then you scream out. My heart hurts buddy. I can't stand seeing you like this. No pain meds want to be given because everyone's scared to see you regress. Surgery is being talked about lightly because we fear for your lungs. 

I think Gods okay with me being angry. I can't imagine He likes to see me tormented on a daily basis. I just wish for a peaceful road to soon takeover this rocky beaten path.

I know our journey is nothing to compare to other children who are struggling to have life right now. But my grief is still heavy for the loss of you not being where you should be.

I love you and can't wait for the day we can drive away from this place together 100% forever!!!

Xoxo,
Mom

First bottle!

Another milestone reached, you got to take a few sips of a bottle today. You were allowed 15ml. I'm so jealous that daddy got to feed you first! He sent me lots of pictures, but I'm still mad at him! *hehe* Tomorrow you get to try another 15-30ml and you better believe I'll be the one feeding you. :-)  If you do great, and aren't working to hard at breathing you'll get orders written to allow you to eat half of all your feedings by bottle! Yay. Then maybe in a week or so you can do your full feeding by bottle. Everyone is very cautious. We don't want to over work you and cause you to tire out. So one small step at a time.

Sleep tight,

Xoxo
Mom

Rocking the Cannula

Sweetness aka fussy boy,

You got the hang of nasal cannula. When I left last night you were at .6 liters and thru the night they weaned you down to .1 liters! Truly unbelievable! Praise God!

I'm hoping for a better day today. You were soooo fussy yesterday. I think you had severe stomach cramps. I could hear your belly rumbling and then you'd scream out in pain. They gave you a suppository to help you poop, I think that did you in. 

I rocked you from noon till 10pm only getting up once to pump, eat and let your siblings hold you. When I placed you back in bed you screamed and your oxygen saturation dropped to the 50s! You turned an ugly shade of blue and I was panicking. Luckily a nurse came in and was trying to figure out what was going on. After looking you over and you still not bringing your oxygen level up she looked over your oxygen setup and  realized your oxygen tubing was unplugged. Oh my! She plugged you back in, and  to 99 You went. I started crying. It hit deep on just how bad off your lungs are and you require oxygen to survive. I was pretty shaken up. But you recovered fine and still are rocking the nasal cannula. Truth is, I think you hated the cpap so much so you fought it, which increased your breathing rate. Once you were switched to cannula you haven't had too many fast breathing episodes, last night you had none. Your blood gas was great. So we continue on, yay!

Once your sister heard you were on nasal cannula she was so excited. Mom told her she could hold you once you reached this milestone. Then your brothers followed, and got a turn holding you. They love you so much!

Keep fighting our handsome warrior! We love you!

Xoxo,
Mom

P.s. if you keep this up, they'll allow you to take a bottle soon!!

Huge Milestone!

Yay! Yay! Hallelujah! You were trialed on nasal cannula today, and so far so good! You started out at 1 liter and within 3 hours you were down to .6liters. Now we sit and make sure you aren't working to hard and your oxygen needs don't increase too much.

You have a team of warriors praying for you. I'm pretty sure 99% of your care team thought you weren't ready. But all it takes is 1% to believe! God tells us all we need is faith of a mustard seed. That's pretty small. Dad and mom both believe! We pray that a God who can rain down fire can rain down oxygen and fill you up! We believe!

Keep strong! Keep proving everyone wrong! Start a fire! Let the whole world know God is not limited in his abilities to heal.

We pray this is the start to home.

Love you,
Xoxo
Mom

Nasal Cannula Soon!

Sweet boy,

We are so excited! You are doing so well on your cpap there is talk from the doctors about trying out nasal cannula in the coming days!!! Yay! Praise God!

You have a rash/indent on your forehead from the cpap equipment so I think the doctors want to get you off sooner rather than later. We are praying it's soon, and you thrive on nasal cannula.

We had to switch supplements yesterday because the one you're on is apparently expired, even though they just ordered it?!  You seem to be tolerating the new supplement a bit better, and pooping more regular. We all get so excited when you poop, because you usually are pretty crabby when you haven't gone in more  than a day.

You are breathing a bit better. Still very fast at times, but we are seeing improvement.

My heart melts each minute I get to spend with you. I could stare at you all day. What a special blessing you are!

Love you,

Xoxo,
Mom

Peep of 5!

Yesterday the doctor ordered your cpap peep (pressure) be lowered to a 5.He wanted it done at 11pm, and then get a blood gas as 2am to make sure you are tolerating the change.  We had a special family prayer time just about the peep change. When we called at a 11:50pm the respiratory therapist had yet to change any settings. Daddy was a bit frustrated, noting happens when they say it will up that hospital. I waited and watched the clock like a hawk to call and hear how you were handling the change and your gas.  I called shortly after 2am, the nurse said you were zonked out and didn't even  wake up for the blood draw. (You were awake from 5-11, and pretty fussy). Your gas came back at 50. The lowest number it's been in weeks!!!! The doctors like you between 45-55. Lately you've been hanging around 60. We are thrilled your gas is low! Now we have to sit and wait and make sure you don't get too tired. A pressure of 5 is pretty close to the pressure mom and dad breathe without a machine (4 1/2). We trust God will carry you through and bring you home soon.

In words of your sister "Jesus, please bring Ezra home soon, because we are just so sad without him."

Love you to the moon and back!

Xoxo,
Mom

Prayer Requests

Sweet Boy,

Many people pray for your healing, which we are soooooo thankful for! There are many prayer requests that mom is asking for, so I'll just list them here;

Slow Respiration: 

Ezra works very hard to breath. The only way I can describe it is like hyperventilating -breathing short, shallow breaths fast. We need his respiration’s to slow down and for him to take long, deep breaths. (a healthy baby breathes 20-40 times a minute, Ezra breathes 60-100 times a minute)

Peep Lowered/ Nasal Canula: 

Ezra is on a CPAP setting of 6. Next step is a 5, then it’s nasal cannula. He’s on the brink of getting lowered to a 5. We need out pouring of prayers that he can last at a 5, and then prayers for him to make it to nasal cannula and thrive! We can bring Ezra home on nasal cannula, we can’t bring him home on cpap. Ezra will be able to eat by mouth once on Nasal Cannula, as long as his respiratory rate is less than 70.

Ezra’s Eyes:

Ezra has ROP disease of his eyes. It ranges in stages of 1-4. 4 Being the most severe- retina deattachment causing blindness. Ezra started out as a Stage 2 and 3. He began healing to where he was a stage 1 a week ago. And now he’s back to a stage 2/3. The eye doctor is a bit puzzled, because Ezra is healing so his eyes should be too. Please pray for complete healing of his eyes, none of this back and forth stuff. Our hearts can’t handle that.

Ezra’s Family:
We are struggling as a family. Our family unit has been shaken to the core. Please pray for our home. Peace and love would fill each of our hearts.

Upcoming Surgery:

Once Ezra reaches nasal cannula, and eats by mouth he will be on the fast track to home. Ezra will need to undergo surgery to repair a hernia which is rather large. Normally this is a routine surgery, but with Ezra, not so much. He will need to be placed back on a ventilator for the surgery. Due to his lungs being so poor, this could set him back greatly where after surgery he may not be able to come off the ventilator! I am trying to not worry about the surgery at this moment because we have LOTS of milestones to overcome beforehand. But please pray for wisdom and peace. It may be possible to bring him home and prolong the surgery, I just need to convince the doctors of that.

Home:

You see me talking a lot about “home”. That’s our hearts desire, to bring our baby home. While I talk about it daily, the doctors make me out to be foolish. He is no where near ready to come home. I continue to believe in miracles. I’m waiting for that moment where God just WOW’s the doctors. I believe God can make a statement through Ezra’s healing, that He is a God who is all powerful, all knowing, all present! Please pray for WOWing of the physicians to occur!

Faith: Please pray for my faith. Some days I’m strong, other days I’m weak and have lots of fears and doubts.

Legion of Angels

Sweetness,

Mommy couldn't get up to see you until the evening, when dad got home from work. It's hard for me to function mentally, when I have to wait so long to come be with you. When I called to check on you the nurse said you were fussy. That always breaks my heart. Laying in bed hours upon hours while only getting held for a small portion tugs at my heart deeply. I cried out to the Lord this afternoon. I hit a breaking point, I told God if He wants me to stand firm on His love and truth, then make this trial easier to bare. When I got to the hospital you were laying in bed just looking around calm as can be. I'm so thankful, God heard my cry this afternoon and sent a legion of angels to comfort you.

Your blood gas was great tonight. I pray we are trending towards another cpap change!

I was able to give you a bath tonight. The last time you had one was 2 weeks ago!! That's pretty gross, and I'd be crabby too if I had to wait two weeks for a bath. That won't happen again, I'll stay on top of your bathing status from now on. :-)

See you in the morning!

Xoxo,
Mom

P.s. you weigh 6lbs 13oz now!! :-)

Boys only Weekend

This weekend it was just you and daddy. I've got a nasty sore throat that involves spitting up blood (gross, I know!). It was best I didn't come see you and get you sick. So it was a boys only weekend. I've been pounding vitamins and am feeling better. I hope tomorrow I'm 100% so I can come be with you.

Not much has changed with your care. Just increased feedings. You are still at a cpap of 6. We need to hit 5, then we can try nasal cannula and eating. While it feels so far away we continue to plead before God that a quick miracle would take place. 

I miss you more than you know!

Xoxo,
Mom

Superhero

EZ,

You were doing so well the doctors moved down your cpap to a 6! I'm cautiously watching you and calling and checking on you often, making sure you are handling the change. Today you were working harder at breathing. I laid hands on you and just prayed God would bless you with slow deep breaths.

The doctor said you have a severe case of chronic lungs, which is so hard to  hear. They say keeping you illness free and growing with good nutrition is the key to healing your lungs. You started a 30 calorie formula mix with milk today. Apparently they never use this high caloric formula in the NICU because it's taken them 2 days to find a distributor to buy it from. 

Your brothers and sister made shirts with your picture on them. One says "my brother is a superhero!"

We love you! You are our little hero/miracle!

Xoxo,
Mom

P.S. Daddy calls you EZ. :-)

Due Date!

You're officially "old" in the NICU world. They call you "chronic", because you'll be hanging around for awhile. Booooo!

The doctors don't round on you till 5pm now! They used to round on you by 10am. You are no longer considered the sick baby on the block. :-)

You are past your due date! We are so proud of everything you've accomplished. This weekend was emotionally tough because it was your due date and looking back when we began this journey I expected you to be home by now. Our world is not the same as it was months ago, we have to make some really hard decisions regarding our family and how we function now and for the upcoming school year. But you are worth it all!!!!!

You had a head ultrasound today and a cyst was found. The doctors believe you had a grade 1 head bleed that is healing. While the news gets rough to hear sometimes, you have life and that we are most grateful for. I don't know what challenges you'll face in the future, but I do know I'll do everything in my power to help you every step along the way. You are one special boy, and we can't wait for these hospital days to be in the past!

Keep growing! We are praying for new lung tissue growth everyday!

Xoxo,
Mom

Sum of Suffering

We finish out the crazy, eventful week with your brother Graham taking a trip to the ER. He burned his fingers on our treadmill. He was in a lot of pain but such a trooper just like you are.

So after days of heavy news, we are rewarded with good news. The pulmonologist wanted an echo of your heart. She was afraid you've developed pulmonary hypertension. The doctor called and said it was the best looking heart and pulmonary function he's seen in a while! Praise The Lord!

The pulmonologist believes you just need more time to grow healthy lung tissue. The problem is, you are growing older and the cpap mask is bothersome and developmentally not good for you. We have a few more weeks to wait things out before we have to make any BIG decisions regarding your respiratory care.  On Monday the doctors along with mom and dad will adress whether we should begin another course of steroids.

More than anything, we just want to bring you home. You are getting to be pretty fussy and it's hard for me to think about what happens when I'm not there. Are you being held? Are you being soothed? Do you cry all night? 

104 days and I'm still trying to grasp a hold of an answer from God, why so much suffering. I don't think I'll ever get a clear cut answer. 

It's  hard to park the car only to see a Dad weeping in the parking garage. It's hard to find a mom sobbing in the elevator. It's hard to see a room empty today when you know yesterday it was filled with many doctors.

There is no such thing as a sum of suffering, for no one suffers it. When we have reached the maximum that a single person can suffer, we have, no doubt, reached something very horrible, but we have reached all the suffering there ever can be in the universe. The addition of a million fellow-sufferers adds no more pain. - C.S. Lewis

But there is One who has had to carry all our pains and sorrows. Christ suffered. To think God took on flesh and had to endure our suffering, gives me hope that God is Love. And an enemy has done this. 

'Knock and it shall be opened.' But does knocking mean hammering and kicking the door down like a maniac? -C.S. Lewis

We are continuing to plead for complete healing.  Sometimes the knocking is kicking like a maniac. But God understands all to well the pain and suffering we are feeling.

What a glorious day that will be when there will be no more tears, no more pain. 

Xoxo,

Mom

It Pours

When it rains it pours and by pour I mean flood! Our washer machine leaked a full load of water all over the floor. The laundry room floor, the carpet outside the laundry room, the kitchen ceiling and kitchen floors are all damaged. But the worst news of the day is not even that, it was hearing you had to go back up on cpap settings. When I think days can't get any worse the devil out does himself. I am in disbelief on the events that can take place in one week. But we are so blessed knowing you have life and your family has life. We will continue on this great fight, continue begging for mercy, healing, and strength.

We love you!
Xoxo,
Mom

P.s. Don't pee & poo on your blankets and clothes this week! We are without a washer for awhile!

100 days!

We celebrated 100 days today! You are getting so big right before our eyes!

You weigh 6lbs now!

We gave you a bath today and you LOVED it. You were doing really well at 39% oxygen when we left the hospital. We called a few hours later before going to bed and your oxygen needs increased and your nurse was worried about how fast you were breathing. She did your blood gas test early and it was borderline okay so they just let you ride it out. Your nurse then looked thru your chart and noticed you didn't receive your inhaled steroid treatment for the night. Apparently the respiratory therapist forgot...

It's so hard to continue on, leaving you alone at the hospital. I promise if we had enough money, I'd make daddy take off work for 12 weeks and I'd stay up there 24/7 making sure you get the proper care. We weren't prepared for something like this to happen. I hope one day you'll understand and forgive me.

We love you sweet boy. Your chunky face always makes me smile! :-)

Xoxo,
Mom

A tough weekend

Sweet guy,

It's been a tough weekend to mentally handle. After visiting you on Saturday we come home to find a 9mm bullet had pierced through your brothers bathroom wall. To think someone out in the country is shooting wild and crazy at or by our house has made momma very frightened. That bullet could've easily hit your sister or brothers. I'm so thankful no one was home, but unbelievably scared at what the future holds for us living in the country.

Then on Sunday we go and visit you and you are not having a good day. The doctor thinks the peep change might have been too much. I'm hurt, frustrated, sad and scared. Honestly, I don't know how to cope anymore. We are so ready for complete healing! I cry my heart out to the Lord multiple times a day. We are giving our all, and we know you are too. I just want you better!!! I want you healed. We want peace to fill our home and hearts again.

We love you to the moon and back and am praying for a better day tomorrow!

Xoxo,
Mom

14 Weeks!

Woohoo! You are making strides towards nasal cannula. We are almost there! Your settings on cpap were lowered to 6 today and you handled it great! I'll be honest I was a bit nervous because the doctor said she didn't want to lower you. "I hesitate moving too fast with Ezra, he likes slow", she said. I told her you were ready! She trusted mommy and put your settings lower. We prayed you'd handle it well, and God heard! We are so thankful! One step closer to home.

You are 14 weeks old and 39 weeks gestation. Next week you'll be considered term! You now weigh 5lbs 12oz!

Your feedings were changed to half preemie formula and half breastmilk. While I don't like the formula part one bit, I've learned to accept it and move on. Your bottom is healing and your growing that's what's important. Formula along with premature birth are both unnatural things. This is why I struggle against the doctors arguments that you need extra calcium, phosphorus, and calories. Your team of doctors are very intelligent and we credit them for saving your life, along with the intervention of God, so we trust them with your nutritional needs.

You teach me daily how to be stronger! God softened my heart today and made me realize everyone's hard times are just that hard times. To us this is the hardest thing our family has gone through. To others there hard times might look different. Trials don't get a score card. Things could always be a lot worse. One day you'll go through more trials and someone might compare their trial to yours. Just remember, that experience might not compare in your mind but it was a tough time and they need God's strength just like you require to get through it. 

And he said unto me, My grace is sufficient for you: for my strength is made perfect in weakness. Most gladly therefore will I rather boast in my weaknesses, that the power of Christ may rest upon me. 2 Corinthians 12:9

Xoxo,

Mom