Baby Charlie: Weeks 3-6

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 Weeks 3-6

Click here for updates from Weeks 7-9

P.S. Lacie’s sister, Loretta, made a GoFundMe Campaign for us. Click here if you’d like to donate.

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Day 42 – April 10 @ 7pm:
Chin Strap, Mouth Closes Again & Mat Time!

Update: The last couple days have been pretty eventful for Charlie. I’ll tell you about the “jaw splint” thing pictured above in a moment. But first let me recap what’s happened since Friday (5 days ago). On Friday Charlie actually closed his mouth for the first time on his own. He did it when he was sleeping and continued to shut it while he was awake that afternoon. 

It was so exciting because he needs to be able to close his mouth so he can swallow and manage his secretions without getting suctioned. And he’ll of course need to shut his mouth to eventually eat too. So Friday he closes his mouth. But then over the weekend he reverted back to having his mouth wide open. We were like, what the heck?! 

So yesterday during his therapy session it was just the OT (occupational therapist) and me. Charlie had a rough morning so by the time his noon therapy session rolled around he was exhausted and just slept. And when a baby is asleep there’s not much “physical therapy” you can do. So we just talked for like an hour. The OT’s name is Tasha and she’s super helpful and great at what she does. But like us, she’s just trying to figure out what’s going on. Why does his jaw look like it’s locked open?

Idea To Try A Chin Strap

At one point during our conversation I said, “This may be a stupid question and it may not work but what if we just sort of strapped his mouth shut? Since his next big obstacle for him to overcome is closing his mouth so he can swallow, why can’t we just help him close his mouth?”

She laughed and I thought, Yep, dumb idea. But she said, “You know I’m laughing because I actually like that idea. We could do something like a splint. As long as the doctor and nursing approve of it I think we should try it.”

So today, while I was out at lunch, they installed a little chin strap (see above photo). I took a picture of it as soon as I saw it and sent it to Lacie, who wasn’t here because she’s still recovering from a cold. She thought it was a good idea too but said it looked like it may be pulling his jaw back and was nervous about that. Plus, she asked if the surgery team approved it or not and I didn’t have a good answer to her great question!

I asked the nurse if she knew if surgery approved and she didn’t know either. So the nurse went to ask the doctor but she didn’t catch her in time before she left. And so we just removed the strap until we can confirm with surgery that it’s ok to use (see, this is what I get for trying to play doctor! Good thing I’m married to Lacie who is more cautious and patient about things… I’m just like, ‘Get that boys mouth shut so he can swallow! Where’s the duct tape?’ Just kidding!). 

So anyway, To Be Continued with the Chin Strap idea… 

Charlie’s New Play Mat!

Another new thing we’ve been doing is getting Charlie out his crib and letting him play around on a soft gym mat. The OT suggested this and talked about how we should get his body moving more because that may also help with whatever is going on with his jaw. So yesterday they brought a mat in and we got to hang  out on there. We did it again today during his noon therapy session, which went great and… he closed his mouth again!! 

Closing His Mouth Again Today!

Tasha, the OT was showing me how to exercise his legs. She was grabbing both legs and moving them up and down when I looked at Charlie and saw him close his mouth! “Look, he closed his mouth!” I said. After about 10 minutes of exercise he just went to sleep. So again, another short therapy session. Tasha had to run to another appointment so I just hung out with Charlie on the mat. But I was so excited because I had just seen him close his mouth again. I called Lacie to tell her and when I did he did it again! “He’s doing it again, I’m going to take a picture.”

As you can see, this closure isn’t quite as much as Friday’s, but it’s still good. So I’m convinced he can do it, he just has to figure it out. And I feel like moving his body around does help. Oh and here’s what his stats looked like while he was sleeping in that position above:

And here’s a video with us on the mat today:

So anyway, we’ll continue to do the daily therapy sessions. And if surgery approves our hockey helmet chin strap idea then we’ll try that out too (btw, the chin strap is set so that it puts minimal pressure on his jaw. It’s not super-tight or anything). 

Other Questions for Surgery Team

Speaking of surgery, we also have other questions for them that we’re trying to get answered. For example, I want to know if they’ve seen this before where a baby struggles to close his mouth 2 weeks after they finish the mandibular distraction process. Is there a chance they could have hit a nerve? Did they over-extend it and now it’s too hard for him to shut? I just have questions.

And it’s harder than you may think to get questions answered from surgery. They’re a whole separate team that’s off-site (their office is somewhere else in Portland). So anyway, I just keep asking the doctors, nurses and therapists. I probably sound like a broken record but I don’t care. 

Finally, the doctor today said she would for sure talk to them on Thursday. Friday the latest. But I told the nurse tonight I’d love to talk to them sooner.

So bottom line: Charlie is still doing good. I’m hopeful he’ll be closing his mouth more and more this week. We’ll continue to do what we can to assist him in the process. 

Prayer Requests: Continue to pray Charlie would close his mouth. There’s lots of questions and theories as to why he’s not closing. And in the natural we’ll continue to investigate, brainstorm solutions, and do all we can to help. However, we also want to remember that we serve a God who tells us that with Him all things are possible! And while it’d be good to find out why he’s not closing it the more important goal is to get him to close it. Therefore, we pray for God’s healing power to come and touch Charlie’s jaw so he can open and close it just like he was created to do! And for his swallowing ability to function perfectly! We pray this in the name that is above all names, Jesus! 

“And whatever you ask in My name, that I will do,
that the Father may be glorified in the Son.
If you ask anything in My name, I will do it.”
-John 14:13-14

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Day 40 – April 8 @ 10pm:
Thank You for Donations!

Update: It’s already after 10pm and I’m tired so going to be brief. But just wanted to check in and let you all know Charlie is doing good. I got to hang out with him most the day today while Lacie stayed at the Ronald McDonald House with the kids. She had a sore throat so she didn’t want to be around Charlie in case she was sick. 

So I went over this morning after breakfast. I held him for a long time and he did great. He wasn’t closing his mouth as much as he did on Friday but he’s still showing good signs of progress. For example, he likes it when I put my finger in his mouth – it seems to calm him down when he cries and I’ve noticed he’ll clamp down on it more than before. We’ll see what the speech and occupational therapists say this week.

A Big Thank You To
Everyone Who Donated!

Lacie and I are so thankful for all the donations that came in through the GoFundMe Campaign. As of today we received $5,865  total, which is awesome! So we just wanted to say THANK YOU to everyone who gave. This helps us in a very practical way because it means I don’t have to take on a bunch of new client work which in turn allows me to be there for Charlie, Lacie and the kids. I’m still working some (2-3 hrs in the mornings) but if it weren’t for these donations I’d have to be working 8-hour days , 5 or 6 days a week. So this has been a major stress reliever. Thank you! 🙂

Prayer Requests: Pray Charlie continues to make progress this week with his jaw opening and closing and for him to start swallowing more. Pray that he’s able to get to the point where he can start working on eating. He’ll be meeting with the therapists tomorrow so pray everything goes well with that! 

P.S.  The photo above is his new favorite toy. It’s so funny because if you turn the light off he starts to cry. Turn it back on and he stops crying. He’s so cute. 

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Day 38 – April 6 @ 4pm:
Charlie Closes His Mouth!!

Update: I’m so excited to let you all know Charlie just started to close his mouth more than he ever has today! Over the last couple days he’s closed it a little here and there – but today was a major breakthrough as you can see in the photo above! 

During his noon therapy session today he did good. I put my finger in his mouth and pressed down slightly on his gums like the therapist showed me how to do. When I did that I felt his little mouth close around my finger more than it ever has before! I was super excited about that!

But then, just like 30 minutes ago, around 4:00 p.m., I was sitting on the bench near his crib when Lacie said, “Oh my gosh, come look at this! Come look right now!” So I got up and looked and Charlie was closing his mouth all on his own. He was moving it around and sticking his tongue out. You could tell he was figuring it out… And when we looked at his monitor his oxygen level was at 100!

So just wanted to share this great news with everyone! Thank you all for praying for Baby Charlie. We’re watching as your prayers are being answered right in front of our eyes! Such a good day! 

Prayer Requests: Thank God for this awesome breakthrough today! We spend a lot of time asking God to do things, which is good, but it’s also important to stop and just give thanks for answering our prayers. So today when you have a quiet moment – maybe on a walk, in the car or in the shower – just stop and meditate on the goodness of God and thank Him for answering our prayer! We’ll continue to pray that  Charlie gets used to closing his mouth and for the next step in his journey… learning to eat! 

“Blessed be the Lord,
Because He has heard the voice of my supplications!
The Lord is my strength and my shield;
My heart trusted in Him, and I am helped;
Therefore my heart greatly rejoices,
And with my song I will praise Him.”
-Psalm 28:6-7

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Day 36 – April 4 @ 8pm:
Good Day for Charlie – New Crib!

Update: Charlie had a great day yesterday and today. He’s still having his physical/oral therapy sessions daily at noon and they’re going well.  We’re still working with him to try and get him to close his mouth completely, which he hasn’t done yet, but he’s made progress in the last couple days. For example, yesterday when he went to sleep his mouth was closed halfway, which he usually never does. So that was great!

He has been fussy during the days – but not like he’s in pain – it feels more like he’s just a 6-week old baby who’s tired of being in his bed, which is a good sign. So Lacie has been holding him more during the days. And the nurses tell us that he is sleeping great during the night. 

Removing Hardware in 3 Weeks

The surgical team stopped by today and said they plan to remove the distractor device that they used to extend his jaw in 3 weeks. So that will be another surgery. He still has the little rods in that are sticking out behind his ears. Initially they said they would remove them a few days after surgery but apparently they’re just going to leave them in and take it all out at once.

New Furniture: Crib and Swing!

Now that he’s a little bigger they moved him from the isolette to a crib aka his big boy bed! I like it because it’s easier to see him plus it looks more normal and less “medical.” He also got a little swing in here yesterday too. We put him in it for the first time and he seemed to like it. He fell asleep in it pretty quickly and slept for a couple hours. 

Kids Back at Ginny and Grandpa’s

Our other 3 kids have been alternating between here at the Ronald McDonald House and their grandparent’s house aka Ginny and Grandpa. The kids were here with us since Saturday and went back to Ginny and Grandpa’s house last night. It’s been such a blessing having Lacie’s parents take them for several days at a time. It allows us to be with Charlie more and me to get some work done. And plus the kids love going there so it feels good knowing they’re having a good time… only downside is we miss them as soon as they leave! 

And here are a couple photos of Auntie Loretta and Grandpa holding Charlie for the first time. Snuggle time with Charlie is the best! Just ask them…

Grandpa & Auntie Loretta Get a Turn!

Prayer Requests: You can give thanks for the good progress Charlie has made the last couple days. Thank God that he’s slowly starting to close his mouth. And pray that he gets comfortable closing it all the way so he can swallow more normally. Pray for God to give insight and wisdom to the occupational and speech therapists who work with Charlie daily. 

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Day 34 – April 2 @ 10pm:
Hard Day for Charlie

Update: Today was a little harder for Charlie than the last few days. He seemed to be fussy most the day and we’re not sure why. I held him this morning and he seemed to settle down some. Then he had his 3rd oral therapy session today at noon. The good news was he seemed to tolerate the work they were doing longer than the other times.

He got a couple good swallows in and he seemed to be making some sucking motions when they would put their finger in his mouth. They said it was a good sign that he’s not pulling his tongue back when they stick their finger in, but instead he sort of cups the finger, like he would a nipple. But he still wasn’t ready to really close his mouth, which makes it hard to swallow and manage his secretions. 

At one point the occupational therapist pushed his mouth shut and just held it there for a while. But he didn’t keep it there on his own. They also massaged around his mouth and jaw to help stimulate his sensorimotor skills, which they’ll continue working on this week. 

I think today felt a little harder because we saw such big improvements during his second therapy session on Saturday compared to his first one on Friday. And today wasn’t much different than Saturday’s. Plus, he was crying a bunch this afternoon and tonight – perhaps because of all the work they were doing with his jaw today. It’s probably really sore still considering they just cranked it open another 3/4″ over the last 2 weeks. So they did give him some morphine tonight to calm him down. He just went to sleep a little while ago. 

So we just have to take a step back from today and look at the big picture to get perspective. When we do that we realize Charlie is still headed in the right direction. He’ll get this whole shut-your-mouth-and-swallow thing down. It just takes time… and some days are just better than others. 

On the positive side, the doctor told me this morning that they did some labs this morning and one of them came back and showed signs that his infection was getting better. I forget the name of what they were measuring, but whatever it was, it went from a 28 to a 3. So that’s good news! The infectious disease doctor will have more to say about that when we see her next. But the doctor seemed to be happy about that.

Prayer Requests: Pray for Charlie to get comfortable closing his mouth so he can work on swallowing. That’s really the biggest priority right now. I know I usually list several things to pray for but tonight and tomorrow let’s focus our prayer efforts on this one thing. Because once he gets that down then he’ll be able to work on other feeding-related skills. But right now we’re still in what they call the “pre-feeding phase.” So let’s pray for breakthrough in this area!

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Day 33 – April 1 @ 10pm:
Benji Holds Charlie!

Update: Last night we all walked over from the Ronald McDonald House to the hospital to say goodnight to Charlie. And when we got in there Benji kept asking, “Can I hold Charlie please? I want to hold Charlie really bad.” At first we said, “No, maybe next time buddy.” But he was so cute – and so persistent. Lacie looked over at me and asked what I thought. I said, “I think it’s fine, let’s do it!”

So we got Benji all set up on the big blue chair and put pillows next to his side. Then we carefully picked Charlie up and put him on his lap. Benji was so happy as you can see in the photo above. He smiled ear to ear. After about five minutes we said, “Ok, are you done?” He just shook his head and said, “No.” So we let him hold him a little longer. It was the best. He’s such a good big brother! 🙂

That was last night. And today was another good day for Charlie. Not as eventful as the prior two days because he didn’t have his oral therapy today. He’ll resume that tomorrow. But Lacie did get to hold him this morning and then I got to hold Charlie for 2 hours in the afternoon. 

He is getting a little more feisty, which I think is good. He’s crying more when he’s not being held. And the nurses said he pulled out his feeding tube twice today! I had to put a sock on his right hand so he wouldn’t do that again. Here’s a picture of him after he pulled it out the second time:

Easter At The Hospital

Today was a little weird since it was Easter and we didn’t go to church or any family gathering like we normally do. But we made the most of it. We woke up to find a note under our door this morning that said there was a special prize for the kids upstairs. So we went up there and they got to pick out an Easter basket, with candy and toys, which was cool! The Easter Bunny also came by the other day so the kids got their picture with her. But honestly, they were a little disappointed because I think they were expecting to see a real bunny. Maybe next time!

Prayer Requests: Pray for the kids to stay healthy so they can continue to visit their little brother. Emma had a cough this morning so we prayed over her and she seemed to do fine the rest the day (praise God!). But pray we all stay healthy so we can be there for Charlie. Also pray for Charlie to have a successful session tomorrow at noon with the speech and occupational therapists. Pray he develops a normal swallow reflex because the needs to do that so he can then work on eating. Thank you all for your prayers!

“Because you have made the LORD, who is my refuge,
Even the Most High, your dwelling place,
No evil shall befall you,
Nor shall any plague come near your dwelling;
For He shall give His angels charge over you,
To keep you in all your ways.”
– Psalm 91:9-11

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Day 32 – March 31 @ 1pm:
A Couple Good Swallows!

Update: Charlie had his second session with the occupational and speech therapist today at noon… and he did great! I recorded a short video of part of it which you can see above. 

After yesterday’s session, Lacie and I talked about how much we loved his speech therapist, David. Not only is he great at what he does but he seemed to really care and was super positive about everything. And before we started today’s session David said, “Charlie is going to do this [swallow]. He’s wired for it.” Then he looked at me and said, “He’s wired to swallow because he’s fearfully and wonderfully made.” I smiled and said, “Amen! That’s right.” I was excited to find out he was obviously a believer.

Once they got him positioned correctly in Val’s lap (the occupational therapist who is great too), David started to do his thing. It was so exciting because at one point when David had his fingers on his throat and one finger in his mouth he felt him have two big swallows! Which was such a great sign! Charlie also had a couple big coughs. Again, another great sign! 

We were all so excited and proud of Charlie. Another good sign is that his stats were great even while they were messing with him. For example, yesterday his monitor beeped probably a dozen times during the 30-minute session. And today it didn’t beep at all until the very end when it beeped once. His heart rate was also much lower during today’s session than yesterday’s.

So today is a great day! We are so happy and proud of Charlie making great strides in the right direction!

Prayer Requests: Celebrate the great progress Charlie is making! We’re so thankful that God hears and answers our prayers. I know so many of you are agreeing with us in prayer and today is a perfect example of why we continue to pray! Continue to pray that Charlie makes progress with swallowing and coughing. His next oral therapy session is scheduled for noon on Monday. So pray that goes great too! And in the meantime you can pray for today and tomorrow to go great for him too as Lacie and I start to do some oral therapy with him that we got trained on today. God is good!

“I will praise You, for I am fearfully and wonderfully made;
Marvelous are Your works,
And that my soul knows very well.”
-Psalm 139:14

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Day 31 – March 30 @ 9pm:
Day 3 Off Ventilator

Update: I’m happy to report Charlie had an excellent day today! Lacie held him for about 2.5 hours this morning and he did great! His oxygen level stayed around 100 while he was in the prone position shown above. So we were both really excited about that!

Then we walked down the road for lunch and came back for Charlie’s appointment with the occupational therapist and speech therapist. They came in to work with Charlie to try and get him to swallow, which is the first step he needs to take for him eat. And before he can swallow he has to get used to closing his mouth.

So they worked with him for about an hour to try and get him to swallow, cough and open and close his mouth. He coughed a couple times and made what they called “emerging swallow” movements. They said Charlie did great and they’re very optimistic about his ability to swallow and eat. They will both come back tomorrow at noon to work with him again.

They also took him off the high-flow nasal cannula around noon today because he didn’t need it, which was also good news. After his oral therapy session I got to hold him for about an hour, which felt good. His cry is becoming louder and it’s great to see his oxygen level stay in the high 90s most the day. He still doesn’t do that well on his back but he’ll get there. So overall it was a real good day for Charlie!

Prayer Requests: Thank God for the progress Charlie made today! And pray for him to be able to close his mouth and to be able to swallow normally. Once he does this then he can work on eating. So pray his session tomorrow with the therapists goes great. 

“But He was wounded for our transgressions,
He was bruised for our iniquities;
The chastisement for our peace was upon Him,
And by His stripes we are healed.”
-Isaiah 53:5

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Day 30 – March 29 @ 9pm:
Day 2 Off Ventilator

Update: Charlie has now been off the ventilator for about 34 hours and overall he’s doing good. But last night was a little harder for him because the surgical team had written orders for Charlie not to lie prone in his bed. He still does much better breathing when he’s on his stomach than his side, so that was hard.

So last night, around 10:00 pm, they put him on a high-flow nasal cannula (that’s the little tube you see in his nose below) to help him out a little. They didn’t even have the oxygen on, so he was just on room air. 

This morning we talked to the nurse and she didn’t know why the orders prohibited him from being on his stomach either. She thought it had something to do with not wanting to put too much pressure directly on his jaw. So we came up with a creative workaround… The orders prohibited laying him prone in his bed but it didn’t say anything about holding him prone.

So we got Charlie all setup on my chest and immediately his breathing improved. It went from low 90s to around 99 to 100. And his heart rate went down, so we could tell he was relaxing. While I was holding him the doctor came in to give us the daily update. He let us know he was aware of surgery’s orders to not have him prone but he didn’t know why either. “I read the orders and it said no ‘recreational prone position‘ and I honestly don’t know what that means.”

We all had a good laugh about not putting Charlie on his stomach purely for “recreational” purposes. The doctor finally changed the orders so Charlie could be placed in his bed prone “as needed.”  So for most the day he’s been on his stomach and his oxygen level has remained around 94 or higher. 

How Long Until He
Can Breathe Normally?

A lot of you may be wondering, Why is he still struggling to breath if he got his jaw extended already? Good question. And before I answer that I guess I should tell you that the doctors told us that it would take some time for him to be able to breathe normally, even after the distraction process was done.

In fact, one of the questions we had for the surgeon was, “About how long after the surgery until you think he can breathe normally no matter what position he’s in?” He said 4 weeks. And his surgery was only 2 weeks ago. So we knew it would be a slower process. I just share that so you know everything is still going as planned. It’s just a slow process. 

Learning to Swallow
And Close His Jaw

One of the reasons he’s not breathing at 100% yet is because his mouth is almost always open. Remember, his jaw bone just got extended about 3/4 an inch so it’s probably painful for him to close. And you can’t really swallow if your mouth is always open. You can try it yourself. Open your mouth wide for about 20 seconds and then try to swallow. Hard, right?

And since he’s not swallowing a lot it makes it hard for him to manage all his secretions, which interferes with his breathing (that’s why he has to get suctioned). The good news is that today he hasn’t had to be suctioned much at all compared to what it was like before they extended his jaw. So we know we’re making progress!

Crying Never
Sounded So Good!

Also, it may sound weird but it’s great to hear him start to cry again! When he was on that ventilator for 2 weeks he wasn’t able to cry… I mean he cried but no sound came out and it was so sad to see. For some reason it just feels better to hear and see him cry. Just feels more normal.  

Last update I’ll share is that they stopped his continuous morphine today around 5pm. They’ll still give him a morphine bolus as needed but he won’t have it continuously. 

Prayer Request: Continue to pray Charlie will learn to breathe well on his own. Pray he’ll be able to start closing and opening his mouth normally so he can swallow. Also pray for his pain to be minimal – especially now since he won’t have his morphine. The ultimate goal is for him to be able to breathe 100%, no matter what position he’s in. So pray for that day to come soon! Even sooner than would “normally” happen.  Thank you all for your prayers. 

“Surely I will cause breath to enter into you,
and you shall live.”
– Ezekiel 37:4

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Day 29 – March 28 @ 10am:
Breathing Tube Removed!

Update: It’s 10:31 a.m. and they just removed Charlie’s breathing tube. Dr. Cuyler, the ENT specialist, said he seems to be breathing good! So that’s great news!!  Lacie stepped out of the room while they did it because she didn’t want to watch. I sat in the corner of the room and watched everyone work: Dr. Cuyler was here, Dr. Pawlik, the respiratory therapist and the nurse. 

It was a rather quick process — only took a couple minutes to do. Dr. Cuyler said his voice will sound a little raspy for the next couple days from having the tube in. But so far, so good! Praise God!

They plan to remove the external distractor devices tomorrow (now I’m not sure when they’ll remove those devices… I’ll let you all know once I find out). Those are the little metal things that stick out behind his ears which they’ve been using to turn his jaw twice a day for the last 2 weeks. He’ll need a separate operation to remove the internal device… I believe in 1 to 2 months.

Prayer Requests: Give thanks that Charlie is breathing well on his own! Thank you all for agreeing with us in prayer for that. God has answered that, so feel free to celebrate this!

Continue to pray for his breathing to be well, no matter what position he’s in (left, right, prone or back). He sounds a little gurgly from being on the ventilator – so pray for Charlie to be able to cough all that stuff up.

Also pray for healing for the MRSA infection that he’s dealing with. Pray the antibiotics do their job well and for the infection to not spread. Thank you all for your prayers! We appreciate them so much because we know God hears and answers them! 

“I will praise You,
For You have answered me,
And have become my salvation.”
– Psalm 118: 21

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Day 28 – March 27 @ 2pm:
Day 13 of Distraction Process

Update: Sorry for not posting an update here the last few days. I was sharing updates every other day before I went to bed. But last night I had to do some copywriting work for a client, so I was up until 12:30 a.m. working on that. 🙁

But anyway, starting today my goal is to get back to daily updates on Charlie because the next few days are going to be eventful for our little guy! Here’s why…

Tomorrow: Last Day of
Distraction Process!

The surgical team decided to increase the turns (where they extend his jaw) so that he can be done with that process tomorrow morning vs Friday as originally scheduled. So basically 2 days early. They said his jaw is looking great and they feel he’s where he needs to be!

I asked if they’re still aiming for the 19.2 mm extension goal like they originally planned and I didn’t get a clear answer. From what I gather, the end result will still be 19.2 or maybe just 1.0 to 1.5 mm shy of that. Bottom line: looks like his jaw has been extended enough! 

Also Tomorrow:
Breathing Tube Out!

So the next step, after they do their final turn tomorrow morning, is to extubate him, which means remove his breathing tube. We’re not sure exactly when they’ll do that, all we know is the plan is to do it tomorrow morning or afternoon. Dr. Cuyler, the ENT specialist, and his team will be overseeing the extubation process. 

“Should we be in the room when they do that?” Lacie asked the doctor this morning. 

“I probably wouldn’t, if it was my kid,” said the doctor. “They’ll be a lot of people in here working on him and it may be hard to even see him. But if you want to be in here, you can. Up to you.”

So tomorrow is a big day for Baby Charlie! This is where we see how well he does breathing on his own with his new jaw and without being on the ventilator. They said the worse case scenario is that if he really struggles they would have to re-intubate him (put the breathing tube back in). But we’re not expecting they’ll have to do that. 

Update On Infection

Regarding his infection… he’s been on antibiotics for the last 3 or 4 days. It’s a type that’s specifically designed to fight the MRSA he has. They said his infection has not gotten worse and there’s no sign of infection in his blood, just in the area around his jaw. So that’s good news. 

They’ll be slowly backing off his morphine starting today because they want to “set up the best possible conditions for him to breathe on his own tomorrow” the doctor said. And morphine can of course make him doze off and not be as alert. So he’ll be getting less of that. 

Prayer Requests: Pray everything goes well tomorrow! Pray that the extubation process goes smoothly and Charlie is able to breath well on his own! Pray for his physical pain to be minimal and for God’s peace to guard his heart and mind. Pray for Dr. Cuyler and his team who will be doing the work tomorrow. Thank you for your prayers!

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Day 25 – March 24 @ 10pm:
Day 10 of Distraction Process

Update: Today was Day 10 of Charlie’s 16-day Distraction Process. All the doctors, surgeons and nurses are saying his jaw is looking great, which we’re thankful for! It’s being extended by 1.2 mm every day – pretty soon he’ll have a new jaw. 

Fighting Off A New Infection

This morning when I got to Charlie’s room the nurse told me he had a 100.6 degree fever and a high heart rate. They also noticed some redness around his right ear where he has the piece of metal sticking out (the distractor device). So they said it’s likely an infection. The doctor came in an hour or so later and said he notified the surgery team so they could assess it. 

A couple hours later two surgeons came in and took a look. They confirmed it was an infection and flushed out the infected area. They took a culture and then stuck a tiny catheter in to help drain out the pus and stuff.  “We don’t get too worried about these infections because there’s a way for the pus to drain out,” the older surgeon said. 

He said they would start him on antibiotics today and also drain the infected area during each distractor turn. After they left I walked over and noticed Charlie was in pain. He was crying – which breaks my heart every time because he can’t make any noise – all you see is his crying face and little tears form in his eyes. The nurses gave him a morphine bolus and he quickly settled down. But man, I hate seeing my little guy in pain like that! 

Lacie’s Sister Started a GoFundMe Campaign for Us 

Tonight, right before I left our room at the Ronald McDonald House to walk back over to the hospital Lacie handed me her phone and said, “Check out what your sister-in-law did.” I read the Instagram post on her screen. It was a post from Loretta about how she started a GoFundMe campaign for us. I read what she wrote and it was so kind and thoughtful. “You have such a great sister,” I told Lacie. 

Up until now I haven’t talked about work or money or anything on here. Not sure why, I guess I just feel awkward about it honestly. But the reality is, money and work have been a source of stress for me lately. Thankfully we have medical insurance that  will cover Charlie’s care. And we had some money saved up which allowed me to take the first 2.5 weeks off work. I’m usually so busy with client work that I’m happy if I get to take Saturday and Sunday off.

My First Week Trying To
Work from the Hospital

So to not work for 2.5 weeks straight is a lot for me to miss. I wish I was in a different place in my business where I could just afford to take as much time as I need off, but reality is I’m just not there yet. So this week I decided to start working again. I’ll wake up early, go visit Charlie and then take the elevator up to the 4th floor to work in this room:

But the truth is it’s been really hard to get work done. For those who don’t know, I work as a copywriter and marketing strategist – which require brain power (a supply which has been in short supply for me lately!). So it’s been frustrating trying to get work done because I feel like I’m working in this thick mental fog. I keep working every day but I’m just really slow.

It takes me about 3-4 times as long to do anything… So yes, even though it’s hard for me to admit it, I very much appreciate Loretta starting that GoFundMe campaign for us. I think I just had too much pride to ask for help myself. But now I realize we could use it. So thank you Loretta and thank you to everyone who has donated. The more donations that come in mean more time I get to spend with Charlie, Lacie and the kids! 

Prayer Requests: Pray for Charlie’s infection to go away as soon as possible. Pray for his pain level to be low and for him to be comfortable during his final week of the Distraction Process. Also pray for Lacie, the kids and I to stay healthy so we can continue to see Charlie (we can’t visit him if we’re sick). Also pray for us to know how to manage our lives here for the next few weeks as we continue to walk through this… Thank you all for your prayers and love! We feel so loved knowing so many of you continue to pray for us.

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Day 23 – March 22 @ 10pm:
Day 8 of Distraction Process

Update: As you can see in the photos above, Charlie’s jaw is making great progress! It’s getting bigger by the day. One millimeter at a time! Oh and we finally got a final answer regarding how long Charlie’s Distraction Process is planned for. Lacie talked to one of the doctors from Dr. Patel’s surgery team on the phone today. He confirmed the plan is to do the Distraction for 16 days total. By that time his jaw should be advanced 19.2 mm. So it was good to finally find that out.

Tonight I got to hold Charlie for a couple hours and he did great. This time his head was positioned so that he was looking at me, which was nice because he just looked into my eyes while I talked to him for the first 10 minutes or so  before he fell asleep on my chest. And when we put him back in his bed this time he did great too. No issues at all! So thankful for that.

Charlie’s New Entertainment!

This morning before I left our room to walk over to see Charlie I told Lacie, “I feel like we should get him a mobile that moves all the time because the one he has now just sits there unless someone presses the button.”

I was thinking about how to rig something up… and then when I walked into his room I saw a projector thing on the floor next to his bed that was displaying a bunch of stars and spaceships on the ceiling above him. I looked and saw that Charlie’s eyes were glued to it! I was so happy and told the nurses they’re so cool for doing that! 

Prayer Requests: Give thanks that Charlie’s Distraction Process has gone so well these first 8 days and pray it continues to go great the next 8. Pray for Charlier to have peace and for him to stay healthy during this process. Pray for the nurses and the doctors to have wisdom as they continue to care for Baby Charlie! Thank you all so much for your prayers. God is answering them every day as we see Charlie progressing so well. 

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Day 21 – March 20 @ 10pm:
Day 6 of Distraction Process

Update: Today was the sixth day of Charlie’s Distraction Process to extend his jaw. He seems to still be handling the turns ok although tonight he seemed to cringe some when it happened. I thought they were extending his jaw 1.33 mm a day (.66 a turn) because that’s what the surgeon, Dr. Patel, told me they planned to do when he talked to me after Charlie’s surgery. But when I looked at the chart on Charlie’s wall that they mark after each turn, I noticed it says .6 mm each turn. So I’m not sure if we’re at 7.98 mm (1.33 x 6) or 7.20 mm (1.20 x 6). 

Distraction Process Could Be 10 to 15 Days

I also don’t know if they plan to do it the full 20 mm or not like they originally said because yesterday one of the nurses told us they heard the plan was to just do this for 10 days (originally, it was 15 days). I asked our main doctor who came in this morning and he said to ask the surgery team. So I asked the surgery team member who came in tonight and he said he wasn’t sure but he would find out and tell us tomorrow. So anyway, we’re just wanting to know what to expect and hopefully we find out tomorrow. 

They did talk about possibly removing his breathing tube on Friday or early next week, depending on how he’s doing. But we want to proceed cautiously with that so most likely we’ll wait til next week. Of course I’d love to see him with his breathing tube out but we don’t want to complicate matters by being too aggressive with that step.

Lily Joy Turned 4 Years Old Today!

Today was also Lily’s 4th birthday! Lacie went and picked her and Cailee up this morning and brought them back here. After visiting Charlie (see pic above) the four of us went to Petite Provence in NE Portland so Lily could get “the best pancakes.” After that we went to a toy store and she picked out a little paper doll kit thing (I don’t know what you call them!). Then we walked over to Salt & Straw for ice cream! I felt like I haven’t seen Lily Bean forever so it’s great having her here. 

Breathing Issue After Holding Him Tonight

I got to hold Charlie for a couple hours tonight, which was great! He slept nearly the whole time and it went well. But then when we put him back his breathing got all weird.

I had just slowly sat up from the chair I was holding Charlie in, assisted by a nurse on one side and the respiratory therapist on the other. I carefully laid him back in his bed when I saw his chest start rising and falling rapidly! The machines started beeping and I glanced over at the heart rate monitor that usually shows his heart rate between 100 and 150. It was just over 200 and it freaked me out! 

They suctioned him and did what they needed to do as I stood back and prayed. It only lasted a few minutes, then he settled down. But it was long enough to make my heart rate spike! It gave me flashbacks to the night he was born when I saw his chest rise and fall like that. Ugh. I hate that.

I told Lacie about it when I got back to our room. She said, “I’m sorry, I know what that’s like. It happened to me one of the first times I held him. It’s why I’ve been so reluctant to hold him. But don’t get scared about holding him. He needs it and he does so good with you.”

She reminded me that while a heart rate of 200 is on the high side, it’s not a horrible thing. I guess when babies get upset it’s normal for their heart rate to get that high. It would be bad if it happened while he’s just laying there though. But I had no idea. I just saw something that looked scary. So anyway, he’s doing good now. I stayed with him in the room until he settled down and went back to sleep. 

Prayer Requests: Continue to pray for the Distraction Process to go exceptionally well. Pray for Charlie’s jaw to get extended so he can breathe normally and then eat normally. Also pray that he has peace during the day and night as he lays in his bed. Pray for his complete physical healing but also pray for his emotional health too. We’re trying to hold him as much as possible but pray that God would make up for any lack of touch he’s had during his first few weeks of life. Thank you all for your prayers! We sincerely appreciate them so much! God is attentive and answering them. 🙂 

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Day 19 – March 18 @ 9pm:
Day 4 of Distraction Process

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. 

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. 

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Day 18 – March 17 @ 11pm:
Day 3 of Distraction Process

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. 

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. 

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Day 16 – March 15 @ 10pm: 
Day 1 of Distraction Process

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. 

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Day 15 – March 14 @ 4pm:
Charlie Back from 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. 🙂

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Day 15 – 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.  

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Day 15 – March 14 @ 1pm:
Just Went In for 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.

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.

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Click Here for Week 7-9 Updates

Click Here for Week 1-2 Updates

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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

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