Another Blood Transfusion

I'm patiently waiting for your blood transfusion to get over with so I can snuggle with you. Your nurse said you had an up and down kind of day. You're requiring 75% oxygen right now. Oh how I wish God would work another miracle and heal you completely!

After your blood transfusion you'll get a dose of lasix to see if that helps get any extra fluid off your lungs and lower your oxygen requirements. 

You had 3 massive blowouts all in row! Way to go champ!

Did you see what you're wearing? Talk about mis-matched. You got crabs on your hat and whales on your sleeper. All I know is if nurse Holly was here she'd have a fit seeing you not matching! You'll have to surprise her tomorrow!

Xoxo,
Mom

"Eshrah"

Ezra,

The steroids we desperately wanted to help heal your lungs did not work. You are working really hard to breathe and your oxygen requirements have been anywhere from 60-92% these past few days. My heart breaks to see you so uncomfortable. Your X-rays look about the same as before, so we have no understanding of what's going on. We wish you could just tell us what you need. In the meantime, the doctors have increased your vent settings.

You are a big boy now! You get to wear clothes and you now have the hood of your incubator opened up to room air. You weigh 3lbs 13 oz. Yes, you gained 7oz in 4 days! Daddy called you "an animal" for gaining so much. We pray your lungs are growing right along with you.

Your brother Graham has been asking to go up the "hopital" to visit "Eshrah" everyday. We all desperately want you to get better so you can come home to your family. God has been teaching us patience through you sweet boy.

Sleep tight tonight, I'll see you tomorrow!

xoxo,

Mom

p.s. you did smile at me yesterday!

Change of Audience

Sweet Ezra,

My hope is one day you can look back at all God has done. You have life and God has a divine plan for it! I'll be here all along the way and update you of your accomplishments as we continue to press on!

xoxo,

Mom

Steroids Update

The steroids have not worked as hoped for. We were expecting to see major changes in oxygenation and blood gas values. Ezra was able to come down on his vent settings so that's some good news. He still has 48 hours left, so we are desperately praying for a miracle so he can get off the ventilator. 

To say the least I was pretty deflated around day 4 of steroids, when Ezra was not improving, but getting worse. When I called the hospital before going to bed, his oxygen needs were 70%. I just cried, and cried, and cried. I remember telling my husband God is not real! How could a loving God not answer the prayers of hundreds? And then I opened a few cards sent to us, and I was completely humbled. Strangers that never met me face to face took the time to send us a card, or a family we don't see too often took the time to send a gas card, families that watch Saving Addiction's website sent us generous gifts, or the NICU dad leaving behind a card and money for dinner as his baby was being discharged. If God was not real, then these saints would have had no drive to do such a loving, giving, kind act. So thank-you for saving me from this deep, dark pit of despair! ALL of your comments, cards, and generosity has truly helped me overcome my sorrows and keep the faith. We can not wait for our opportunity to pay it forward.

Now onto the little mans stats, He's 15 1/2 in long! 3lbs 5oz! If he gains a few more ounces, on Saturday (34 weeks) his incubator hood can come up and he can start wearing clothes! He's eating 1 ounce every 3 hours! We now have 1,300 ounces of breast-milk stored in our freezer for when he comes home and has a larger appetite! He's pooping and peeing like a champ, he actually peed on one of his favorite night nurses through the incubator arm hole. He loves his pacifier. There's no doubt in anyone's mind, when he's off respiratory support he's going to be a great eater! That will be one glorious day!

Ezra had his eye exam on Tuesday, and has stage 1 and stage 2 ROP Disease. We expected him to have atleast a stage 1 due to his early gestation. Please pray with us it doesn't progress past a stage 3.

If you're curious about ROP- ROP occurs when abnormal blood vessels grow and spread throughout the retina, the tissue that lines the back of the eye. These abnormal blood vessels are fragile and can leak, scarring the retina and pulling it out of position. This causes a retinal detachment. Retinal detachment is the main cause of visual impairment and blindness in ROP. There's 4 stages, 4 being the worse requiring laser surgery and other interventions. (you can read more here)

Steroids

Tonight starts the first dose of steroid treatment. This will be a 10 day process, slowly tapering off the dose to wean him from the medication. This is a last ditch effort to help his lungs out. They don't typically do steroid treatments anymore due to all the serious and fatal side effects. We ask for your prayers again. The potential side effects include (cerebral palsy, NEC, ulcers, high blood pressure, infection, stunted growth, neurological damage). This was a hard decision to make, and the Neonatologist group was split on whether they think the benefits outweigh the risks. We do know leaving him on the vent for extended period time only causes more damage, so we are willing to go ahead with this treatment plan.

Please pray Ezra would respond to the medication. His lung inflammation would go down, and he could be extubated from the ventilator without any of those side effects. 

7 Week Update

Exhausted is how we would describe what we are all feeling! 4500+ Miles have been driven to be with Ezra these last 50 days.

We are at a standstill. Ezra is still on the ventilator, high settings, high oxygen, and still has hazy lungs. He's been hoovering around 3lbs the last week and half. Now the dietitians are concerned about his weight gain/loss. He's on the highest possible calorie supplement so there's really no where to improve. He's been on a week long diuretic to help him loose any excess fluid he might have on his lungs. It really did nothing. No vast improvement like we were hoping for. We need him to grow so his lungs can grow!

I just want him to turn this corner and get better!! This waiting game is nearly killing me. If I could just put a sign up that says "Please Don't Talk To Me" I would. My heart is broken, I feel like I have experienced hell on earth. To me everyone is happy and continuing on with life while ours is in complete shambles and hope of it ever returning is in the long, distant future. The only way I can describe it to another mom, is like walking into a store with all your children and when you are ready to leave one is missing. No matter how much you pray, no matter how much you cry, you still can't find that one child and bring him back home with you. Pure agony.

 On a positive note, Daddy was ready to hold Ezra this week! 

6 Week Update

Thank you for the constant prayers! Ezra has stabled out. He is requiring 45-55% oxygen, which is a vast improvement from days ago. He weighs 2lbs 13oz now, I'm hoping he hits 3lbs on my Birthday (Tuesday)! He's 14inches long. He is on the low end of the growth curve, but as long as he's on the curve no one is worried. He was given a dose of lasix to see if that would help improve his "wet lungs". It seems to have helped. He was also given a few does of potassium and his heart arrhythmia has stopped. His blood gases are slowly improving with each day. He's also back on the conventional ventilator, so no more vibrating baby. We are SO THANKFUL for the turn around! It's nice to take a deep breath and not feel like we are hanging off the edge of a cliff.

He's beginning to suck on his fingers and breathing tube! Which are all good signs! We just need his lungs to heal and grow to get this breathing tube out. It's hard to believe he's 6 weeks old. This has been the hardest 6 weeks of our lives, but we are so thankful for Ezra he's the greatest blessing and worth it all!

I know we ask for constant prayers for Ezra, but if you could also pray for our 5 other children. Their world has been turned upside down. They are showing signs of stress in various ways (illness and attitudes). Our only hope is at the end of this God would be glorified and our family could be pieced back together.

Prayers For Healing

Ezra's lungs are steadily getting worse. They switched him from the conventional ventilator to an oscillator. (super loud, constant puffs of air) His little body just vibrates. The oscillator doesn't seem to be improving anything. Ezra's oxygen needs were around 88% when I arrived at the hospital this afternoon (he was at 50% yesterday) . He's had two chest x-rays today that show no considerable changes, besides "crappy lungs" is the term they use. We have had discussion after discussion with doctors... They all feel like time is going to solve the problem. If his oxygen needs trend towards 100% then they'll step into action. For now we sit and pray for healing to take place on his lungs. We need his oxygen needs to come WAY down, to even consider lowering any vent settings. Everyday these settings keep creeping higher and higher which is so discouraging. It's disheartening to watch him continue to get worse and require more support. 

One good thing to note is Ezra is tolerating his full feeds! He's getting 6oz of breast-milk a day, and pooping and peeing great! We are thankful for that. He's 2lbs 12oz. 

As I sit here and type, there's a baby next door to us crying. I'll never take that sound for granted ever again!!! We pray, hope, and plead we'll get to hear Ezra cry soon

5 Week Update

I wish I had a miraculous update to bring. Sweet Ezra is not doing well. In fact everyday has been getting worse. Ezra has been diagnosed with Chronic Lung Disease. His left lung is worse than the right. His oxygen needs are anywhere between 50-70%. His ventilator settings continue to increase when the goal is to decrease. He is suffering from a heart arrhythmia that causes his oxygen saturations to constantly drop. The doctors have stopped his caffeine (stimulant) and had a Cardiologist evaluate him. The Cardiologist believes this arrhythmia is related to prematurity and will eventually grow out of it. 

Honestly I don't know how to process or handle any of this. Truth is I'm extremely angry. Doors have been slammed, yelling has taken place and tears never seem to end. I know at any moment God has the power to overturn all this, I guess that's why I'm even more upset. I wish I could stand and say I am a faithful servant, but to see my son struggling on life support only getting worse I can't proclaim anything. I'm hurt, I feel like I am being punished witnessing this struggle between good vs evil on the life of my child. 

To see his sweet little eyes look up at us, makes my heart melt. We'd do anything, give anything to see him get well.