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 March 14 on.
And below you’ll find updates from Charlie’s first two weeks of life (Feb 27 – Mar 12). This was before his surgery, which was on March 14th.
- March 12 @ 2pm – 2 Days Before Surgery: Praying for Miracle
- March 9 @ 7pm – Holding Pattern Until Surgery
- March 8 @ 12pm – God’s Peace Calms Charlie for CT Scan
- March 7 @ 12pm – Surgeon Schedules Surgery for Next Week
- March 6 @ 4pm Last Night: First Night at Randall
- March 5 @ 4pm – Transferred to Randall Children’s Hospital
- March 4 @ 2pm – X-Ray Shows Normal Esophagus
- March 3 @ 9pm – Video of Charlie at 4 Days Old
- March 3 @ 10am – Day #4: Breathing Remaining Steady
- March 2 @ 7pm – Occupational Therapist Tries Bottle – Doesn’t Work
- March 2 @ 2pm – First Day Off CPAP Machine
- February 28 @ 1am – A Few Hours After Arriving at NICU
March 12 @ 2pm –
2 Days Before Surgery: Praying for Miracle
Update: Not much happened over the weekend so that’s why I didn’t post on here the last couple days. But I just wanted to post something today to let you all know Charlie is still doing good. We try to hold him as much as we can every day. I usually get at least one good 90-minute session in during the day and one at night. They tell us skin-to-skin is really good for him so we try to do that as much as we can. His surgery is still scheduled for Wednesday but I’m still praying for his jaw to be healed before that so he doesn’t have to go through surgery. We’re supposed to meet with the surgeon today or tomorrow, so I’ll probably post an update after that. We’re still staying here on campus at the Ronald McDonald House, which has been such a blessing. I’ll try to publish a post about that later with some photos.
Prayer Request: This has been quite the faith journey for me. I’ve heard a wide variety of opinions, advice and beliefs about God, faith and healing during the last two weeks. And with so many competing voices and thoughts — both from others and from my own mind — it’s forced me to search the scriptures to see what God says about these matters. And by the way, I realize not everybody reading this shares my spiritual beliefs, so just to give you some context I’ll let you know where I’m coming from…
I became a Christian in 2004 after almost dying from severe drug addiction. I had a $500/day cocaine addiction and even after going to the best rehab money could buy (it was $28,000 for a month of treatment), I was still addicted. After relapsing twice I finally broke down on a bathroom floor and prayed, “Jesus, if you’re real save me!” From that moment on I never had a single craving for drugs. I also felt hope for my future rise up inside me. Before this I assumed I’d die before I was 30, so to be excited and happy about my future was a big deal.
Shortly after this I read in the Bible that God heals the sick. I read that “by His stripes we are healed” and so I believed that He could also heal me from my mental disorders. At the time I was seeing a psychiatrist who had diagnosed me with severe depression, ADHD and bipolar. I was on all these different meds to try to make me feel normal. But after I believed this biblical promise I was healed from all my mental issues! Unless you’ve struggled with these issues it’s hard to understand how miraculous this was.
So I know God can heal because I’ve experienced it. But now, 14 years later, I’m faced with another situation requiring God’s touch. The only difference is that back then I had more childlike faith, so all I needed was one verse about healing and I believed God.
Now I have 14 years of religious teaching (some good, some bad) to filter through. I’ve heard some teach that sickness can actually be a good thing, sent from God to “mature” us and I’ve also heard that it’s always God’s will to heal. The church seems to be all over the place on the subject of divine healing.
And until now, I’ve never done a deep comprehensive study on healing. I’ve believed in it, but I’ve never really searched the scriptures like I’ve done the last two weeks. I don’t have time to share all my findings but I can tell you this: I’m becoming more persuaded in my heart that God always wants to heal.
After all this study I’ve learned a big theological question is: “Did Jesus redeem us from our diseases when He atoned for our sins?”
In other words, when He died on the cross did He carry away our sins only or also our sicknesses? Because if healing is included in the Atonement then it’s available to all just like eternal salvation is available to all. Which means bodily healing would also be accessed by faith, just like salvation.
“He Himself took our infirmities
And bore our sicknesses.”
– Matthew 8:17
The reason I’m sharing all this in this Prayer Request section is because I believe it’s important to know what the Bible says about these matters so we can pray in faith, knowing it’s always God’s will to heal.
And even if that doesn’t persuade you then consider a completely rational argument to believe for healing, which it this:
If you pray for healing and “go all in” in your heart, the only risk is that you may be disappointed. You may also look a little foolish to those who don’t believe in this. But that’s it.
However, if “it works” then Charlie gets to avoid the pain of surgery and the long recovery process!
So to me that’s why I’ll be praying for a miracle in Charlie’s jaw right up until the scheduled surgery. The reward far outweighs the risk! Hopefully this encourages you to do the same… just go for it, you have nothing to lose! 🙂
March 9 @ 7pm –
Holding Pattern Until Surgery
Update: Not much to report today. The doctors say they’re in a holding pattern until Wednesday, which is when they have the surgery scheduled for. Charlie is still breathing well on his own and still getting fed through that little tube you see above every 3 hours. We’re still waiting to meet with the surgeon, which should be “any day now.” Apparently he’s based elsewhere in Portland so he’s not at always at this hospital. I haven’t seen the scans they took on Wednesday yet, but I heard through the nurses, that they were acceptable quality.
Prayer Request: Like I said before, surgery is not a horrible option. So if Wednesday comes and he’s still not healed, of course we’ll proceed with the surgery and direct our prayers toward the surgeon, etc. But that’s four days away. So in the meantime I’m praying for a creative miracle to take place in Charlie’s jaw so he would not have to endure the extractor surgery. The doctors said this is a “very painful” procedure and he would be on drip morphine for weeks afterward.
I of course do not want my newborn son to go through a “very painful” experience. This is why I’m motivated to exercise my faith for his healing. I’ve seen others supernaturally healed, including a woman I prayed for years ago at Matt & Mindy’ Seppala’s Healing Barn who had been diagnosed with cancer. I ran into this woman over a year later and she told me how she got healed and had remained cancer-free! Praise God!
I remind myself of these stories, and share them with you, to stir up the “measure of faith” we’ve each been given. I do this because more often than not I feel like my faith is weak. I honestly relate more to the father who said, “I believe, help my unbelief” than I do to the Roman soldier in Luke 7 who had such bold faith that it made Jesus marvel.
But, I take heart when I remember that it’s possible to grow in faith. “So then faith comes by hearing, and hearing by the word of God.” So if you struggle with “little faith” like me I want to encourage you to keep exercising those faith muscles. I believe the more we do, the more effective our prayers will be!
P.S. – I met Chris Overstreet recently at a business prayer breakfast meeting. He then came and spoke at our church. He heard about Charlie and sent me this video the other day. I love all the prayers that are pouring in for little Charlie!
March 8 @ 12pm –
God’s Peace Calms Charlie for CT Scan
God’s Presence & Peace Calms Charlie During Scan
Yesterday morning I met with Charlie’s doctor who let me know the next step was to get a CT scan done. Like I said yesterday, he let me know that he was honestly skeptical that we’d be able to get his scan done the normal way due to Charlie’s condition.
He spent a while explaining how that if we could not get it done the normal way then they’d have to put a feeding tube down him to try again, which was not the best option. But it was the best they could do if the scan was unsuccessful. He said they’d still give it a shot even though he didn’t have high hopes for it.
Around 1:15 the transport team came and prepared to move him. Then me and two women from the transport team took him down to the lower level of Randall and wheeled him into a big room with this huge machine in the middle:
They placed him on the machine and he started to cry and not do well. You could feel the tension in the room rise because we all knew that the doctor had placed him on what’s called a “low threshold,” which meant that if he started to have trouble they were to stop the scan and just take him back.
There were now three women (one radiologist and two transport team members) surrounding Charlie trying to get him to calm down. I was standing about 10 feet back letting them work, when one of the women looked over at me and asked, “Does suctioning usually help?”
“Yes, it does,” I said.
But after suctioning he still wasn’t calming down.
“Does he do well with a pacifier?” one of the women asked. I felt my heart sink a little as my mind raced over the last eight days of trying to give him a pacifier and him not really taking it.
“Not really,” I said. “But you can try.”
They tried and it didn’t help. He seemed to get worse. At the moment I felt a panicky feeling of anxiety start to bubble up in my heart. I could feel that at any moment they were going to call the scan off… But then suddenly — felt like seconds after the anxiety came — a different feeling hit me.
I felt a tremendous amount of peace in my heart and then all these verses about peace came to mind, so I started to pray them out. “Jesus, thank you that you are the Prince of Peace and I that you are here now… be still and know that I am God… please still Charlie right now…. and the peace of of God shall guard your hearts and minds in Christ Jesus… God, I pray you guard Charlie’s heart, mind and body with your peace.”
Then I began to pray and sing in the spirit quietly. And then I started to sing a new worship song, this time in English. I don’t remember the words now but it wasn’t a song I knew. As I was praying I kept my eyes on Charlie and I saw him stop crying and just go still. All three women stopped what they were doing and quietly ran back behind the big glass wall to start the scan.
I was allowed to stay in the room with Charlie next to the machine because I had a big lead vest on. As the machine started to light up and spin around I felt so much peace in the room. I felt God’s presence fill that place and I wasn’t worried at all. It was amazing!
As soon as the machine stopped moving the women came back to get Charlie. “Did you get it?!” I asked. “Yeah, we got it!”
After we wheeled Charlie back in his room my eyes filled with tears as I thought about what had just happened. I just felt so loved and like God was so near. It’s hard to put into words.
This morning Charlie’s nurse said, “I told the doctor we got the scan done and he said ‘You did not!'” She also said he smiled when he heard this. I really like this doctor but he doesn’t smile much, so I suspect he was really happy about it too!
So that’s the latest news on Charlie! I haven’t seen the scans yet. Apparently they make a 3D image of his skull and will look at the bones they have to work with for the potential surgery on Wednesday. I’ll keep you posted.
Prayer Requests: Give thanks for the successful scan yesterday! That was a great win! His surgery is still scheduled for Wednesday but I’m praying for his jaw to grow before that time so he doesn’t have to endure the procedure. So if you’re praying for God to move then you can direct your prayers at that specific request.
And by the way, I’ve been so impressed by the NICU teams here at Randall and back at Salmon Creek. I’m so grateful for these medical professionals and everything they do. Like I’ve said before, this isn’t about doctors vs God or “natural” healing vs supernatural healing… It’s about Charlie getting better. So we thank God for the care we have here. And those of us who believe God still heals and does miracles today continue to pray and exercise our faith for that! We’re all doing the best we know to help based on what we know and believe.
March 7 @ 12pm –
Surgeon Schedules Surgery for Next Week
Update: I met with Dr. Pawlik this morning and he said the OMF surgeon looked at Charlie yesterday and confirmed that they want to proceed with the extractor surgery. But they want to get a CT scan done first. So they ordered one for around 1:30 p.m. today. The doctor said he was skeptical that Charlie could get the scan done the traditional way simply because he doesn’t do well positioned on his back and they need him to be still for the scan. But they’re going to attempt it anyway. If it doesn’t work then they’ll have to put a breathing tube in to do the scan.
The surgery is tentatively scheduled for next Wednesday so he doesn’t want to put the breathing tube in now and have to leave it in for a week. He’d rather put it in just a day before the surgery and do the scan then if it doesn’t work today. So that’s the next big thing for Charlie.
The Ronald McDonald House
When we were at the Salmon Creek NICU I met a few volunteers from NICU Families Northwest. It was cool because minutes before I met them I saw a flyer hanging on the wall promoting a website that had resources for NICU families. One of the bullet points said, “Stories from other NICU families.”
I thought, I’ll check that out because I would love to hear some positive testimonies from other parents who have went through this. And then I walked down the hallway to the Family Lounge and found these three volunteers sitting there:
“Hi, we’re volunteers from NICU Families Northwest. Help yourself to food and coffee,” a woman said. They had brought a bunch of breakfast food in and coffee for the families. I toasted a bagel and sat down and talked with them for about 20 minutes. They each told me their stories of being in the NICU.
“Our daughter was born at 24 weeks and we were in the NICU for 5 months,” Leslie said. “She’s 2 years old now, healthy and spunky as ever,” her dad Jose said.
It was so encouraging to hear their stories. I told them we were headed to Randall and they said it was a great hospital there. They also told us about something called the Ronald McDonald House. They said it was housing on site for the families and that it was awesome. They were right!
I told Lacie about it and she inquired when we got here yesterday. She ended up coordinating with them and we got a room at the Ronald McDonald House yesterday. It’s such a blessing because it’s only a 5-minute walk to Charlie and we have our own room with 2 beds and a bathroom. Plus, there’s a ton of stuff for the kids to do there! I stayed there last night and Lacie and kids will be joining me later today. For now it’ll be our new home away from home!
Prayer Requests: Pray that the CT scan goes well for Charlie today. They have to transport him to the basement area (he’s on Floor 2 right now) to do this. So pray the transport goes well and that they’re able to get a good scan without having to do the breathing tube. Also continue to pray for his jaw to come forward. We now have 7 days until the surgery is scheduled, so if you’re one of the ones praying for his jaw to come forward then just know that’s our “deadline” to see that happen to avoid surgery.
March 6 @ 4pm
Last Night: First Night at Randall
Update: Last night was Charlie’s first night here at Randall. I slept in his room and Lacie drove home to be with our other three kids. There’s just a little curtain you pull to separate the “bed” from the rest of the hospital room so it’s a little weird sleeping here. I went to bed around 1:00 a.m. and then woke up a few times in the night during his “care times” — which they do every 3 hours.
Then around 8:15 I heard a different voice in the room so I peaked around the curtain and saw an older man dressed in slacks and a tie looking at Charlie. “Hi, I’m Jim Cuyler, the ENT doctor,” he said. Dr. Cuyler basically told me the same thing Dr. Pawlik told us yesterday — that they want to see if Charlie would be a good candidate for the distractor surgery. But they still need to have the OMS surgeon assess him. He will likely want to get a CT scan done so they can look at the 3D image of Charlie’s skull and jawbone to better evaluate him. I believe he’ll come by tonight or tomorrow. So we’re still waiting on that.
They said if they do this they’ll likely want to put a breathing tube in Charlie before the operation and leave it in afterward because it would takes at least a couple weeks for his jaw to get extended. Here’s a brief explanation, from this website, of how this procedure would work:
The day after surgery, each distractor arm will be turned a full 360°. This separates the pieces of bone by 0.5mm. This procedure is repeated every eight hours for approximately 10 days. During the eight hours between turns, your child’s jawbone will grow to fill the space.
This gradually makes the jaw bone longer, which will move the tongue away from the back of the throat. This in turn makes the airway larger, and breathing will become easier (see below).
The distraction device will stay in place for a period of time to support the new bone as it gains more strength. This will occur over the six to eight weeks (approximately) following surgery. During this time your child can be at home and will be breathing and feeding normally.
The distraction device is removed once the bone is strong enough. This involves another surgery, and your child will need to stay in hospital for another one or two nights.
Prayer Request: Like I said yesterday, surgery is not a horrible option. But when we’re talking about prayer and faith we may as well ask God to do what only He can do, like extend Charlie’s jaw without having to stick rods in his jaw. So if you want to pray for “healing” then you can direct your prayers at this specific need.
Also, last night I got an email from a client who read this post and then wrote:
Keep praying Josh. My daughter had so many opportunities for failure. A few weeks in she developed this bubble in her stomach where all the fluid could get trapped. The docs said let’s wait and see what happens but we may have to do surgery bc it’s serious very quickly. In just a few days the entire thing went away. The doc said I’m not sure how much praying you’ve been doing but in 25 years I’ve never not had to do surgery…so keep doin what you’re doing. She is a miracle baby. She’s 100% healthy and as stubborn as they come. She’ll def be a negotiator in her future.
So that of course encouraged me! So yes, keep praying. 🙂
March 5 @ 4pm –
Transferred to Randall Children’s Hospital
Update: We met with Dr. Freitag at the Salmon Creek NICU this morning and he decided to transfer Charlie to Randall Children’s Hospital for further evaluation since they have more specialists there. So Lacie and I packed up and a transport team came and got Charlie. We got here around 3:00 p.m. and met with Dr. Pawlik here who briefed us on the situation.
He reminded us that the two main goals are to get Charlie to do “normal baby stuff” on his own — especially breathing and eating — with breathing being the most important of the two. And in order for him to breath right he need an open airway. Right now that airway is still obstructed due to his recessed jaw.
Dr. Pawlik let us know that today or tomorrow the ENT specialist, who he has been in contact with about Charlie, will be in to assess him. Another specialist will also come in to see him (I forgot what he’s called but it’s basically the doctor who works with the actual bones in the face).
He said one scenario may be to do what’s known as a jaw distraction surgery. According to this article, “The procedure involves surgical insertion of distraction (lengthening) devices into the jaw. These devices allow the jaw bone to be lengthened. In most cases, as the jaw is lengthened, the airway opens up and allows the child to breathe clearly.”
The doctor isn’t saying we’ll do this for sure at this point. The specialists still need to assess him. And even if they would want to do this, Charlie would have to be a good candidate for the procedure — in other words he would need the right anatomy. He said other options would include a tracheostomy, but that is not on the top of the list.
So we’ll know more after the doctors look at him and run their tests. He said they would likely do a CT scan to get some 3D images of Charlie’s skull. Right now, Charlie is sleeping and doing well. His breathing is still good (no CPAP! still) and he’s still being fed with a feeding tube. He wakes up every few hours and looks around and moves his head and sometimes tries to bring his hands up to his mouth like he wants to suck his thumb. 🙂 He’s a cutie for sure!
Prayer Requests: We’re still praying Charlie’s jaw will come forward so he could avoid surgery. Surgery isn’t a horrible thing but we’d rather not have him go through it if possible. So that’s a specific thing you can pray for.
Also pray for God to give wisdom and insight to the doctors and nurses here. I’ve been so impressed by the level of care at both hospitals. The nurses and doctors are amazing people and I’m so grateful for them.
I’m reminded that we can believe 100% in supernatural healing (God) and also believe 100% in natural healing (doctors). It’s not one or the other. We don’t have to devalue one to elevate the other. So, I’m going to keep praying for God to do what only God can do and keep praying for the medical team to do the best job they can do also. Thank you for your prayers!
March 4 @ 2pm –
X-Ray Shows Normal Esophagus
Update: I just talked to the doctor and he said the x-ray showed that Charlie’s esophagus looks normal, so no issues there. But they said it looked like his right upper lobe on his lung wasn’t opening completely. It didn’t sound like a major thing but they just want to monitor it. They think it may be due to how he’s been positioned (mostly on his right side since he hasn’t like laying on his left side as much). So they’re going to trial him on his left side more to see if that helps.
They also noticed some drainage around his foreskin last night so they cultured it and it tested positive for MRSA (Methicillin-resistant Staphylococcus aureus). The doctor said there’s not signs of infection right now but they want to prevent it from spreading around the hospital so they’re taking more precautions when treating Charlie (like the nurses now wear a little disposal apron thing now). The doctor explained how babies are basically sterile in the womb, but as soon as they pop out, bacteria starts to colonize them. So they’ll monitor this.
We’re still waiting for Baby Charlie to develop his sucking reflex so he can eat and swallow without the tube. The doctor said we’ll see how today goes and then assess him tomorrow (Monday) morning to see if they want to send him to Randall Children’s Hospital in Portland for further evaluation.
A lot of you have asked how Lacie and I are doing so I thought I’d update you on that too: Lacie got to spend the night at our house last night with Loretta and the kids. I just talked to her on the phone and she’ll be here soon. She’ll be staying the night here tonight. She sounded rested and more relaxed then a couple days ago so I’m glad she got to recharge!
For the first 4 nights I slept in Charlie’s room but last night I finally slept in one of the private family rooms down the hallway. I got about 7.5 hours of sleep which felt great! It was hard for me to sleep in the other room though. I went in there around 10:30 p.m. but kept thinking about Charlie so I snuck out, put my slippers on and walked down the hall at midnight to check on him one more time before I could go to bed. I know he’s in good hands here and the staff here is great. But it’s still hard being away from him.
Prayer Requests: First of all, if you’re one of ones who has committed to pray for Charlie I want to sincerely thank you. I felt like God reminded me that there’s power in persistent prayer. In other words, not giving up or wavering because the answer doesn’t come right away. I heard the phrase “The Cumulative Effect of Prayer” and as I began to meditate on that I was reminded of a prayer experience Daniel had.
In Daniel 10:12-13 it talks about how an angel went to respond to Daniel’s prayer but then encountered resistance. When the angel arrived he said, “…the prince of the kingdom of Persia withstood me twenty-one days.” I’m also reminded that all of God’s promises are yes and amen (2 Cor. 1:20)! So even when the answer isn’t immediate we remain steadfast knowing our prayers are effective! So continue to pray for Charlie’s jaw and tongue to come forward and for his sucking and rooting reflex to fully develop so he can eat and breathe without any problems.
March 3 @ 9pm –
Video of Charlie at 4 Days Old
Update: Charlie had three great “wins” today! First, he has not had to get suctioned as much as his first three days, which means he’s able to manage his saliva better. So hopefully that means he’s learning to swallow better. Secondly, he has been more alert today than before. Several times today he opened his eyes and looked around a bunch (see video below).
And the third win was during his 6:00 p.m. feeding. I dipped a swab (it’s like a Q-tip) in some of Lacie’s breast milk she had pumped and put it in his mouth. He seemed to like it and started to make a sucking motion with his lips! He didn’t suck a lot but it was enough to get the nurse and I excited! I spent about 20 minutes slowly massaging his tongue with the swab while he was getting tube fed. Before today his breathing would drop down whenever we messed with his mouth like this and he would have to get suctioned. But not today! He did great and didn’t need to get suctioned while I did this.
I also got to hold him for 1.5 hours today, which was awesome! Usually when he gets held this long he would need to get suctioned 2-3 times. But today he only had to get suctioned once during those 90 minutes! So we’re celebrating all these steps in the right direction!
I’m also feeling so thankful for the support from all our friends and family. This morning I was here by myself so it was nice when “Uncle David” (David VahnDijk) came to visit. Then Rocky and Harmony came by this evening and brought us some great food – BBQ chicken salad with avocado and some yummy dessert too! It hit the spot (Emma said, “Auntie Harmony should be a chef when she grows up!”).
Then Grandpa (Lacie’s dad) came with the kids and we had a great visit (I realized how much I miss my other three kids after being here for 4 days!). I’ve also been so encouraged by all the prayers everyone has been making on Charlie’s behalf! I know people are praying for Lacie and I too and I feel like that’s why we’ve had so much peace, hope and strength during all this. So THANK YOU!!
Prayer Requests: Continue to pray for Charlie’s suck and root reflexes to develop properly. Also pray for full development of his lower jaw. When I dab his mouth with the swab of breast milk I find myself praying for his jaw to “come forward,” so you can agree with us for that too. I do believe once his jaw comes forward, his tongue will be positioned better, which will allow him to suck well and breathe clearly! So those are some specific points of prayer you can help with. 🙂
March 3 @ 10am –
Day #4: Breathing Remaining Steady
Update: Charlie did well last night. His breathing remained steady (oxygen level in the high 90s or 100)… And Lacie finally went home last night around 9:30 to get some sleep and recharge her batteries. Loretta visited so she rode back with her.
Before his midnight tube feeding last night I used my little finger to do some oral stimulation. I could feel his little tongue move around my finger and he tried to bite down a few times. I couldn’t really tell if he was sucking or not, which is what we’re wanting more than the biting.
I slept in the room again and woke up to see the doctor and a nurse working with Charlie. The doctor said his breathing is great but his sucking still isn’t there yet. So we’ll monitor that today and tomorrow. He ordered an x-ray just to make sure there were no issues with his esophagus. He didn’t really think there was but they just wanted to rule it out. They took the x-ray around 10:00 and we’re waiting for the radiologist to look at it.
Prayer Request: Our main focus right now is on Charlie’s ability to suck. Because if he can start to suck then he can start to eat. We’re also praying he can of course swallow too – which has been hard to assess since he’s been tube fed since birth. So please pray baby Charlie will be able to suck!
March 2 @ 7pm –
Occupational Therapist Tries Bottle – Doesn’t Work
Update: He’s on a feeding schedule of 9-12-3-6. And during his last 3:00 p.m. feed the Occupational Therapist came in to see if he would suck; and if he could then we’d try a bottle. After about 10 minutes of her sticking her finger in his mouth and massaging his tongue, she said his sucking was real limited.
The good news was he did try to suck a little so we could tell he’s trying. But it wasn’t enough to try a bottle. The Occupational Therapist showed us some techniques on how to stimulate his tongue with our fingers, which we’re to do before his feedings so he can associate the sucking with eating.
We met with the doctor after this and he said Charlie may have an isolated case of Pierre Robin sequence. He suggested we see how Charlie does over the weekend to see if he improves and is able to start sucking so he can eat without a feeding tube. If he fails to improve then they’ll likely transfer him to Randall Children’s Hospital in Portland so an ENT specialist could look at him.
Prayer Request: We’re praying that Charlie’s sucking ability will greatly improve over this weekend. We’re also praying he’ll be able to bottle feed once his sucking improves.
March 2 @ 2pm –
First Day Off CPAP Machine
Update: They removed the CPAP machine last night around midnight and his breathing is doing well. But the next big thing to assess is his ability to suck and eat. The doctor checked him earlier today and said his gag reflex is really low (he almost doesn’t have one). His chin is also recessed and they’re wondering if there’s an anatomical reason as to why he’s struggling to suck and process all the secretion that builds up in his mouth. In about 30 minutes from now they’re going to test feeding him without the tube. So we’ll see if he’s able to suck, eat and swallow on his own. So here’s how you can be praying…
Prayer Request: We’re praying Charlie will be able to swallow on his own and that he would develop his gag reflex. If there’s any anatomical (structural) issues with his jaw we pray God would heal it and bring it forward if necessary! We pray for Charlie’s 100% healing in Jesus’ name!
February 28 @ 1am –
A Few Hours After Arriving at NICU
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
I have been following Charlie’s progress and updates. I am praying for you and your family. May God hop baby Charlie in His hands.
I am sending my prayers to your family, especially for Charlie. I hope he’ll recover soon. God will heal this sweet little child.