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.