The Monens

Our Life

Baby Charlie: Week 3

Baby Charlie, 3/14 @ 11:30 am

(Scroll down for updates on Charlie.)

Charlie was born at home on February 27th at 5:29 p.m. You can read more about the birth here. After about 5 hours we called 911 because we noticed how much he struggled to breathe. In the Emergency Room they suctioned out a lot of fluid from his lungs, nose and mouth. Then they admitted him to the NICU where they diagnosed him with Pierre Robin sequence.

Pierre Robin is a set of abnormalities affecting the head and face, consisting of an underdeveloped lower jaw and a tongue placed further back than normal, which cause a blockage of the airways.

I started blogging about Charlie on the third day we were at the NICU so I could share updates and prayer requests with everyone.

Click here for updates from Weeks 1-2.

Below are updates from Week 3:

March 18 @ 9pm –
Day 4 of the Distraction Process

3/18 @ 1:24pm – Mr. Mustache Man (Lacie’s design!) 

Update: Today was the 4th day of the Distraction Process to extend Charlie’s jaw. They’re advancing his jaw by 1.33 mm a day, so it should be 5.32 mm longer than it was before they started the process. Several people have said it looks like his jaw already looks different. I think it might look different too but it’s hard to tell if it’s just puffy from everything or if it really is longer than before.

5.32 mm is such a small amount anyway, so I feel like we’ll notice it more after a few more days of this. One thing Lacie and I both noticed was that Charlie’s tongue seemed to be coming out more. Before it was so far back that you barely saw it. So that was good to see his little tongue come out every now and then. 

Lacie got to hold Charlie for a couple hours today, which she really enjoyed. She hasn’t got to hold him as much as I have over the last couple weeks so it was great to see her get to spend so much time with him today. 

3/18 @ 3pm – Snuggle time w/ Mommy

Prayer Requests: Please continue to pray for the Distraction Process to go as well as it can go. Pray for Charlie’s jaw to be extended just right so he can breathe normally on his own and also eat normally too. Pray for his pain to be minimal and for the surgical team to continue to do an excellent job with the turnings he gets twice a day. 

March 17 @ 11pm –
Day 3 of the Distraction Process

3/16 @ 7pm Awake and looking around

Update: Today was Day #3 of Charlie’s Distraction Process, where they turn the device attached to his jaw two times a day. About 30 minutes before each turn the nurses give him a morphine bolus before the surgical team arrives to do their thing at 6:00 a.m. and 6:00 p.m. He seems to be managing these turns well. You can tell if he’s not because his heart rate increases, tears form in his eyes and his face squishes together. This happened the first time before they got his pain medications dialed in right, but since then he seems to be handling them well. 

Yesterday I got to hold Charlie for 3.5 hours at one time! I loved it. With his breathing tube in it’s a lot more work to hold him. Now it takes two people, the respiratory therapist and a nurse, to help me get Charlie out of his bed and unto my chest (before his surgery I only needed the nurse to help). So when I get all setup I try to make the most out of it! When he’s on my chest I have to make sure he doesn’t turn his head the other way because of the breathing tube. But he mostly just slept the whole time. 

3/16 @ 3pm – Snuggle time!

The physical therapist came in today to show us how to massage his little body so he can get used to what they call “positive touch.” We want him to associate being touched with positive things, not just negative things, like getting an IV or getting his jaw extended. So Lacie massaged his legs and toes. They said we can do this once a day. 

Today was also Emma Grace’s 6th birthday! So Lacie and I spent most the day with her (Lily and Benji are at Ginny and Grandpa’s). We had a great time!

We started our day by taking her to Mother’s in downtown Portland. Then we came back to visit Charlie with Mary and Pita. Then we went to OMSI and then had lunch at the Game Knight, a board game lounge where we played Hungry Hungry Hippo, Balderdash and some My Little Pony game. On our way back we stopped by Compass Coffee where she got a hot chocolate. This was the longest I’ve been off the hospital campus since Charlie was admitted 18 days ago. So I kind of felt like I was back to “normal” life for a bit today.

Prayer Requests: We really appreciate all the prayers and support we’ve gotten from our friends and family. So thank you! Please continue to pray for the Distraction Process to go as well as it can go. Pray for his jaw to be extended just right so he can breathe normally on his own and also eat normally too. Pray for his pain to be minimal and for the surgical team to continue to do an excellent job. 

March 15 @ 10pm – 
Day 1 of the Distraction Process

3/15 @ 6:03pm – Day 1 After Surgery

Update: Today was an eventful day for Charlie. Yesterday he had the surgery where they seperated his jaw bone and attached a “distraction device” to each side of the seperated bone. The plan is to advance his jaw 1.33 mm a day for 2 weeks until it’s extended a full 20 mm.  And so today was the first day they turned the distractor arm. They did it once early this morning and then again tonight. 

I watched them do it today and it was not fun to watch. They have a little tool they use to turn the device behind each ear. It looks like they’re turning a screw and even though he’s on morphine I was still cringing for him when they turned it. At one point, one of the doctors from the surgical team who turns the device said, “I know it seems like this would be really painful but it’s not too bad because we’re only turning it a small amount each time.”

“How do you know? Have you ever had one in?” asked one of the nurses who was standing across from him on the other side of Charlie’s bed. 

Yes, you tell them! I thought.

I love the NICU nurses here, they’re my new heros. We decided that our new rule is that one of the nurses must be in there whenever the surgical team comes in to do their distractor turns. 

Charlie also had a PICC line inserted today to replace the IV. Apparently IVs only last 24-48 hrs and PICC lines can last up to a month. So this will spare his veins from the frequent “needle sticks” that he would have had with an IV. 

Tomorrow will be Day #2 of the distractor turning procedure. He’s scheduled to have it turned at 6:00 a.m. and 6:00 p.m. each day. So I’m going to bed now so I can wake up early to be there for his morning one. 

Prayer Requests: Pray for Charlie to not be in pain. Also pray for protection against any infection around the distractor device and PICC line. Also pray for the distractor procedure to work the way it’s designed to so his jaw gets extended just right. 

March 14 @ 4pm –
Charlie Back from Surgery!

3/14 @ 3:40pm – After Surgery

Update: Charlie is all settled back in his room now. I met with the surgeon, Dr. Patel, and he said everything went really well in surgery! He made the incisions as planned. The ENT doctor was there just in case they needed additional help getting his breathing tube in, which they didn’t. So that was good. The anesthesiologist said there were no issues giving him the anesthesia. As you can see in the photo above, his eyes are open, but he’s still pretty sedated. 

Dr. Patel said the plan is to turn the distractor device 1.33 mm a day until they reach 20 mm (2 cm). So that will take about 15 days. They’ll do that twice a day – once in the morning and again in the afternoon. So then we’ll see if we can take the breathing tube out so he can breathe on his own. And then he’ll need to learn to eat. They told us to plan to be here another month — 2 weeks for the distraction and then another 2 weeks for his recovery and for him to learn to eat. 

Prayer Requests: Pray for a speedy recovery for Charlie. Also pray that the distraction technique goes great, that it moves his jaw forward correctly so he can have an open airway. Also pray for protection against infection around the areas where they operated. He’s MRSA-positive, so we’re praying he doesn’t have to deal with any infections on top of everything else. Also give thanks to God for a great surgery! 

And later, after I get a chance to process everything when I get some time alone with God, I’ll try to share about the issue of Charlie not getting healed before the surgery. I know a lot of you were praying with us that a miracle would take place so he could avoid surgery. That of course didn’t happen. And that can feel disappointing. As I thought about this I remembered a sermon I heard from Bill Johnson about six years ago about disappointment. I listened to it again today and it encouraged me. It gave me some tools to work through some of these feelings. You can listen to it here if you want.

As you can imagine, it’s been an emotional roller coaster the last couple weeks. But overall I can honestly say I’ve had more peace than fear. God is good and He’s been here with us through it all. I know He doesn’t cause these things to happen but like a good friend and father, He’s right here with us. Thank you all for your prayers. We’ll continue to pray — just shifting our focus to Charlie’s extractor process now! I’m just happy Baby Charlie is going to be ok. 🙂

March 14 @ 3pm –
On Way Back from Surgery

Update: They just came in and told me Baby Charlie is on his way back up from surgery. Sounds like everything went according to plan. I’ll update again later after he gets settled back in his room.  

March 14 @ 1pm – 
Charlie Just Went In for Surgery

30 minutes before surgery.

Update: Baby Charlie is in surgery right now. They said it’ll last about 2 hours. We walked him down to the Surgery Room on the Lower Level at 12:00 p.m. today. They stopped his feeding at 2:00 a.m. last night and switched him over to an IV (that’s what’s on his right arm in the photo above). I held him for about 90 minutes last night and another 90 minutes this morning. He was very alert and moving his head around from side to side. He started crying this morning, but I think it’s because he was hungry.

Charlie and his crew marching him down to surgery.

Here’s a brief summary about the surgery, which I found on this page:

The surgery takes approximately 2-3 hours. Your child will need to stay in hospital until their airway has opened up and they are breathing clearly and without assistance.

An incision is made through the skin under the jaw line, and then the jaw bone is carefully sectioned to enable a distraction device to be attached to either side of this separation in the bone. This happens on each side of the jaw.

The distraction device is not visible after the operation except for two small rods that will protrude out from the chin or from behind the jaw line. These are called the distractor arms, and this method of distraction is called internal mandibular distraction:

After his surgery, each distractor arm will be turned a full 360°. This separates the pieces of bone by 1 mm a day. The goal is to extend his jaw by 20 mm (2 cm) over the course of 20 days. Then new bones will grow in behind it. This will gradually make his jaw bone longer, which will move his tongue away from the back of his throat. This in turn will make his airway larger so he can breath easier.

I’ll update you all again after his surgery. 

Prayer Requests: Our prayer requests now turn to the surgery. Pray for the surgeon, Dr. Patel, and his team to do an excellent job. Pray for Charlie’s breathing to be healthy during the procedure (he has a breathing tube in). And pray his pain would be minimal. 

Click Here for Week 1 & 2 Updates

Thank you for your prayers!

Feel free to leave a comment, prayer or any words you’re hearing from God in the comments below! We appreciate everyone’s faith-filled prayers! With God all things are possible. We know it’s God’s will to heal and that He’s given us the opportunity to partner with Him in prayer. 

“Therefore I say to you, whatever things you ask when you pray, believe that you receive them, and you will have them.” – Mark 11:24


  1. Heidi Seppala

    03/02/2018 at 11:29 pm

    agreeing with you in prayer!! We love you Charlie and are cheering you on!

  2. Thank you so much for sharing. Sending our love to Charlie and you guys and will be praying for sure!

  3. Jessika Seppala

    03/02/2018 at 11:34 pm

    Praying for baby charlie. We declare full healing over this chin and that he will take his feeding.

  4. I was praying for him and God gave me a picture of a lion and a lamb in Charlie. And I’m calling out to him and saying “it’s time for the lion now baby Charlie. There will be a time for the lamb, but now is the time for the lion.”

    Auntie Redda loves you so much baby boy❤️

  5. We are definitely praying for our precious Charlie boy!! God’s Hand is upon him w/healing & all will be well!! We are in agreement w/ God’s will in Heaven for life, health, breath, strength, all things aligned & in order for He is Mighty to save (sozo) & does all things well!!! His Hand is not short that He cannot do, but is fully extended to do all that is His good pleasure & we rejoice that He delights in showering us w/His Goodness!! Always His goodness!! So we know we have what we ask for!!! We are in total agreement w/you, Joshua!!!

  6. Michael & Deanna Monen

    03/03/2018 at 6:37 am

    Baby Charlie we love you very much. And we are praying for your complete healing, and wisdom for all the doctors whom God has put in your pathway.

    ….All things happen for the good for those who love Christ and are called according to His will….

    Thank you Lord for little baby Charlie.

  7. Stacy Vargas

    03/03/2018 at 6:52 am

    Praying for complete healing in Jesus name!

  8. Grandpa & Grandma Monen

    03/03/2018 at 7:02 am

    We love you baby Charlie and we are praying for a quick and complete healing. We are also praying for Gods wisdom for all the medical staff that the Lord has put in your path. Your such a blessing and we thank the Lord for your arrival.

  9. Agreeing with you in prayer! Praying for little Charlie. What a sweet little angel.

  10. We love you guys are are praying for baby Charlie and his parents!!

  11. Great Ginny

    03/03/2018 at 9:34 pm

    James 1:7
    Every good thing given and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shifting shadow.

    • Thank you Great Ginny! You’ve been such a wonderful source of support and encouragement during this. Lacie and I agree, that every time we talk with you we walk away with so much more peace. You’re awesome! Keep praying!

  12. Connie Talo

    03/03/2018 at 9:39 pm

    Oh my goodness!! I just now heard baby Charlie was born! He’s adorable!!

    So sorry to hear he’s been struggling. We’ll sure be in a spirit of prayer over him…for totally healing for his jaw, and that he can start sucking and eating! In Jesus’ Name!!

    Wish I was there. Love you all so much!

    Auntie Connie & Uncle Bruce

  13. Grandpa & Grandma Monen

    03/04/2018 at 6:27 am

    Thank you Lord for answering prayers, we are so excited about baby Charlie’s progress. We we pray right now “Lord, we ask in the name of Jesus Christ that your Angles keep charge over Charlie Jhon Michael Monen and that you touch him with the Holy Sprit and we claim complete healing right now, and we all belive togeather that Charlie’s sucking will be strong and that his jaw be restored, thank you Lord for your devine healing. In Jesus name we pray.

  14. Praying for Charlie🙏🙏 Hes so cute and alert!
    Lord please heal him!
    In Jesus name, amen.

  15. Connie Talo

    03/05/2018 at 3:50 am

    I love the video of baby Charlie!! He is precious!! xoxo

    Continuing to pray for more progress and total healing…in Jesus’ Name!

    Praying also for you, Josh and Lacie! So thankful you’ve been able to get rest, and that you have an awesome support team there.

    Thanks for the updates and for sharing this journey.

  16. We rejoice w/you at the progress! We continue to call Charlie’s chin & jaw line to come forward! We pray his lungs be fully functioning on both sides & that God’s strength & healing be fully manifested in Charlie’s body!! Healing is the “children’s bread” according to the Word, & it is our inheritance, so we thank Father, Son & Holy Spirit for this promise/provision & lay hold of it rejoicing!!!

  17. Grandma & Grandpa Monen

    03/05/2018 at 11:33 pm

    Thank you for keeping us all updated on Charlie’s progress. We will continue to pray for Charlie’s Jaw, and Sucking. We are also praying for the Holy Spirit to give you both peace during this trial.

    • Thank you both for your prayers! Good to know Grandma and Grandpa Monen are standing with us in prayer! Keep praying!

  18. We agree! We agree! We agree! Thank You Father for YOUR pathway to Charlie’s healing!!!

  19. Heidi Seppala

    03/06/2018 at 5:52 am

    Thank you for the update!! been praying a bunch for sweet Charlie!!

  20. Grandma Monen

    03/07/2018 at 7:24 am

    Bless Charlie John Michael Monen, with a complete healing. in the name of JESUS!!!!
    We ask you have favor with our sweet Charlie 💓Amen💓 Sending our love and prayers for you and lacie💓 p.s. Gods got this, keep your faith up💙

  21. Connie Talo

    03/07/2018 at 9:24 pm

    Continued prayers for Charlie! So happy you found a Ronald McDonald House; they’re a blessing!

  22. God is continuing to show Himself Faithful & sooo very Good in all He does & in all His ways!!! We continue to pray & thank Him for His Hand at work on Charlie’s behalf!! We call those bones to grow out! to come forward! to match God’s design!! His Life & Breath to flow freely to Charlie & from Charlie!!!
    Holy Spirit, Breath of God, come we pray & breathe over Charlie! Cause his perfect chin & jaw to be manifest here on earth as it is the Father’s will in Heaven!!! Thank You, Thank You our Lord & God!!!!

    • Amen! Thank you for agreeing with us in prayer for Charlie’s healing. I’m so happy Charlie has Nana and Papa V praying for him. And thank you so much for taking the time to visit and pray with us this weekend!

  23. Such beautiful faith and fathers love in your writing Josh. I know God is so very proud of you. He definitely feels the same for Charlie. I pray in agreement and just lift up you and Lacie, and your whole family before our heavenly Papa. I pray that the Holy Spirit inhabits the room, the , floor and the whole hospital. That your presence there will touch the lives of every nurse doctor and employee. Jesus be lifted up. Let the miracles overwhelm the whole place. I have been there and there are not words to describe the moments that turn to days. Every thought and emotion until your just there. I pray you just rest in Gods arms and receive His love. Those times past are some of the most precious of my life and the hardest. Praying with you and all those above. 🙏💚

    • Josh

      03/12/2018 at 9:44 pm

      Jeff, thank you so much for your thoughtful comment and prayers. I didn’t know you had a little one in the hospital before. I love prayers like yours that come from a place of experience, strength and hope. Thank you for your prayer support.

  24. This verse came to my mind the other night while me and lacie talked, worshipped, and prayed together for Charlie.

    “Taste and see that the Lord is good;” Pslams 34:8

    Charlie will taste and see just how good, how faithful, how loving, how kind, how amazing God is and so will all of us ❤️

    • Josh

      03/12/2018 at 9:40 pm

      Amen! Thank you Loretta. I love this. You’re such a strong prayer warrior and I know you love little Charlie, so I get so happy when I think about you praying for him. Keep it up! It helps so much!

  25. Patricia Hanson

    03/08/2018 at 10:26 pm

    Hello dear Josh & Lacy, and Welcome to our Sweet little Great Grandson Charlie. I haven’t Ignored you,
    We’ve been Praying for you ever sence day one,and put you on every Prayer chain we know,all the way to Seattle.want to bring to your remembrance the first Scripture’s. The Lodr gave me the night I gave my Heart to him, I dident believe he was there until after I had prayed, he took me to. Mark 11:22 -25,
    And Jesus ansewering, Saith Have Faith in God, for verily I say unto you that who so ever shall say unto this Mountain be thou removed and be thou removed and be thou cast into the sea : and shall not doubt in his heart, but shall believe that those things shall come to pass : he shall have what so ever he Saith. therefore I say unto you what things so ever ye desire when he pray Believe that ye receive them. And when you stand praying Forgive if he have ought against any, That your Father also which is in Heaven may forgive you your ttrespasses ,but if you don’t Forgive neither will your Father which is in Heaven forgive your trespasses,,,that’s how I knew there was a God, because that night I thought I e’s just talking to the ceiling, I came out with those words I forgive John of every thing, I wasent thinking of those words they just came out, cause I dident know how to repent, when I finished I grabbed a bible and opened to Mark 11: God’s useing. You for what’s happening, for the one’s around you, He’s Our Healer and he’s going to Heal Little Charlie I believe that in my Heart, Its in his Timeing, keep the Faith, I know he’s given Dr’s Wisdom. To. do what they have to do, it’s Our God. who Does Miracles and Heals, after you’ve done all STAND!!!❤❤

  26. Lorinda Silliman

    03/10/2018 at 5:04 pm

    Oh, i just wanted to say i am praying for your sweet boy, the doctors, specialists, mama and daddy, and the entire family!
    Almost all of my children have been delivered at home by mary and pita! They are angels as far as i am concerned! Lol.
    My little Abigail was born with hypertonic tmj and myofacial looked somewhat like what your charlie has been going through. She was born, unable to open her mouth, or smile, or cry. She had no rooting reflex, no swallow.
    We were so scared! But Yahweh is so good! It took three hands to get hef mouth open a tiny bit, but just enough i could slide the tiny french five tube youre using down her throat to push breastmilk into. I would massage her little neck downwaed to stimulate her swallow. Over time, that worked! She also had a severe posterior tongue tie, that we couldnt see very well at all for the first few weeks.she didnt get enough of a suck for a special bottle for months, but everyday was improvement! I pumped every two hours for 13 months to be sure she got my milk! Iwas so very tired, but she was so precious.
    Instead of her jaw being to short, it was the top portion of the mouth, so mNy teeth she doesnt have room for and her palette will one day have to be stretched. Her jaw is very tight in the back still, but the last year, shes been able to open her mouth fully! She got a bottel at 8 or 9 months and still destoryed the nipple on ot because of biting down, but was able to drink while i rubbed her throat. By thirteen months she was swallowing and graduated to soft or ground up foods. Most things she could swallow and as she grew, that improved greatly! Shes 7almost 8 years old now. She has a lot of work to do on her teeh, but she smiles, laughs, plays. Is so very happy and such a blessing to everyone she meets! I am praying and beleiving you will be met with the same successes in Jesus’name!

    • Josh

      03/12/2018 at 9:39 pm

      Lorinda, thank you for sharing your story with us about Abigail. I love hearing positive stories like this. It encourages us! Thank you.

  27. Melissa Guptill (Thomas)

    03/10/2018 at 9:58 pm

    Josh and family! I just saw this on FB this morning and read through all you’ve been through the past week or so. My heart aches for you all! I will join you all in prayer and ask the God gives wisdom to the doctors and gives you energy, peace, rest and powerful prayer. God will see you through this whatever the future holds He never leaves us nor forsakes us, praise be to God!

  28. Nana & Papa.

    03/12/2018 at 12:16 am

    Thank you Josh for the up dates,praise God for the progress,He’s not finished. ❤
    Math 18:19-20 Again I say unto you that if 2 of you. Shall agree on Earth as touching any thing that they shall ask it shall be done for them of my. father which is in Heaven,
    For where 2 or 3 are gathered. together in my. name there am I. In the midst of them,
    There’s so many Prayer’s going up for. little Charlie and you & Lacy and all involved, We’ll give all the Glory to God.

    If we have the Faith as a. grain. Of Mustard seed we can ask any thing. and it shall be done.
    The Mustard seed is the Smallest of every seed!

    Love you guy’s and Praying for Charlie’s. Total Healing, hope to see Him soon, and the whole Family . Love. Nana & Papa ❤💕😊

    • Josh

      03/12/2018 at 9:35 pm

      Nana, thank you for your prayers! It’s great Charlie has a faith-filled great grandma like you praying for him.

  29. Grandpa Monen

    03/14/2018 at 5:59 am

    Joshua & Family, I was reading your post yesterday Josshua and it gave me reason to pause and really think more deeply about your mention of atonement concerning sin and sickness. And for me and my understanding of what the Word tells us, is that sickness came to us all in the beginning with sin at garden of Eden. And if that is so, then I believe it is very clear that the two go hand in hand. And therefore, with the Atonment that Lord Jesus provided for us all on the Cross was for both eternal salvation and healing of every kind. So today have still have His promise that if we belive in our hearts that He died for our sins and rose again on the third day we will have enternal life and all that goes with believing in faith including healing. For He is the same yesterday and forever. Yes, I very much with all my soul belive Jesus heals and miracles are witnessed every day. I’m praying for baby Charlie and for healing tonight. Thank you Lord for every thing. Amen.

    Love Dad.

  30. Becky Walker

    03/15/2018 at 12:02 am

    So thankful for a successful surgery. Emma’s class was praying for all of you today! Praise God for doctors who had the skills necessary to help Charlie and the grace of God for a successful procedure. We will continue to lift you up before our Heavenly Father. Mrs. Walker

  31. Grandpa Benny

    03/15/2018 at 6:29 am

    Josh these verses helped me tonight while I was praying. Psalms 27.13-14. I would have lost heart, unless I believed I would see the goodness of the Lord in the land of the living . Wait on the lord; be of good courage, and He shall strengthen your heart, wait I say on the Lord!

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