Your sister sure has fun dressing you up!
Monday, December 29, 2014
Ezra has a respiratory virus that is causing him to need an increased amount of oxygen. More so than what he was on in the NICU. We had a chest xray done and shows his right lower lung alveoli are not expanded. If these don't expand they can fill up with fluid and cause pneumonia. He's on oral steroids, albuterol breathing treatments every 4 hours and twice a day steroid breathing treatments. Its hard to hear doctors say his lungs look worse now then they did in the NICU a few months back. We have experienced a few scary nights this past week, and just need God's healing hands to cover him and open up his lungs.
Thank you for your prayers and support!
(This picture is of Ezra stealing my spot in bed after his 4am treatment! :-) )
Thursday, December 25, 2014
Wednesday, December 10, 2014
You're getting so big! Almost 12lbs! And your personality is coming out! You are such a lover! You definitely don't like being set down!! So we all tend to spoil you, because you deserve it! Christmas is fast approaching and we are so thankful that you are here with us.
You had your first illness, a cold, and with lots of prayer it only lasted a few days. While it took me (mom) 2 weeks to get over my cold!
We are continuing to slowly decrease your oxygen needs during the day, with hopes you'll be off soon!
You fill our hearts with such joy! We love you!!
Wednesday, November 12, 2014
You've been home 2 months!! And this week we've been given the okay by you to take off oxygen for an hour a day! In a matter of 2 months we've gone from totally dependent on oxygen to 'if you take your nasal cannula out, you'll be okay'. God is good my sweet boy!
Saturday, October 18, 2014
Your smile is contagious! Full of life!
You are fast approaching the 6 months old mark. You are still wearing newborn clothes, but they are getting a little snug, so we might retire them this week. You weigh 9lbs 9oz! You're 8lbs heavier then where you started!
We had a follow-up eye appointment and the doctor was so pleased with how well your eyes look. He said I am blessed to have a son with beautiful eyes!
You have weekly physical therapy appointments that you scream through. You hate tummy time, and for some reason they feel one week you'll just love tummy time. Ha! We shall see. But for now you are right on track developmentally for a 2 month old "corrected age". You can lift your head, roll over with a little assistance and smile!
Your oxygen needs keep decreasing! Such a blessing to see continued prayers answered. Hopefully soon we can kick this tank to the curb! RSV season is set to start November 1st. I think your lung doctor will want to keep you on oxygen for the entire season, possibly to your first birthday. We have an appointment coming up to find out....
Your sister just eats you up. She's a mini mom that holds and sings to you. When grandma couldn't get you to settle down, Raegan took over and you instantly were quite. We love seeing her with you. So precious!!!
Monday, October 6, 2014
Oh how I love you!
These days are hard and long. But oh how worth it you are! I'm so blessed to be called your mom. To see life. To watch you breathe overwhelms me. All could've been lost but spared you were. So many nights I wondered where we were headed. If I could be strong enough to handle the outcome. How our faith was put to the grinding wheel and I'm not convinced I passed the test, but I do know God loves you more than I do, which is unthinkable! I knew from a very young age all I wanted to do in life was be a mom. I remember asking God at the age of 10 to not return until after I have a child. I just wanted to expirence motherhood. A family. New life. At the young age of 17 I was unprepared for the news that I was expecting your oldest brother Parker. I knew then as I do now each life is a gift. There was a high school teacher of mine who set up a time for me to talk to an abortion clinic counselor. He told me I'd never amount to anything having a baby so young. I'd never be able travel. I'd never be successful. I walked out of his room 10 years ago, knowing that God chose me to be his mom. Just like He chose me to be your mom. Though I might not be much in others eyes, I'm worth a lot in our heavenly father's eyes. You are what I dreamt for. What I prayed for. Though I might not get to travel, I get to live life through 3 blue eyed and 3 brown eyed wonders every. Single. Day. Success is only what we make it. It's not riches and its not fame. Success is giving up all to follow according to His plan. Sure, most days are long, tiring, but so rewarding. To see every inch you grow, to see every ounce gained. To witness your first smiles, to see you poop without assistance (ha) is my payment. I'm blessed beyond measure.
Love you my precious gift!
Friday, September 26, 2014
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
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
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! :-)
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
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
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!
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 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!
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 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
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.
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
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!
Sunday, August 31, 2014
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!!!
Thursday, August 28, 2014
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.
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!
P.s. if you keep this up, they'll allow you to take a bottle soon!!
Wednesday, August 27, 2014
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.
Monday, August 25, 2014
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!
Saturday, August 23, 2014
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!
Thursday, August 21, 2014
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;
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 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.
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.
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.
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.
Tuesday, August 19, 2014
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!
P.s. you weigh 6lbs 13oz now!! :-)
Sunday, August 17, 2014
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!
Thursday, August 14, 2014
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!
P.S. Daddy calls you EZ. :-)
Monday, August 11, 2014
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!
Friday, August 8, 2014
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.
Wednesday, August 6, 2014
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!
P.s. Don't pee & poo on your blankets and clothes this week! We are without a washer for awhile!
Tuesday, August 5, 2014
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! :-)
Sunday, August 3, 2014
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!