Month 3_Day 11 - Better Day

Today was a better day. Levi is doing well and is stable. His head stayed the same as it was yesterday. Getting to Chapel Hill isnt an emergency at the moment which is good. Its still not absolutely certain that he will need the reservoir surgery. We will find out for sure when we see the specialist there. We are still holding out some hope Levi will not need the surgery of course. We of course want him to have it if the docs there think he needs it. Please continue to pray the hydrocephalus will not progress. Please pray us to find some peace with this whole situation.

Month 3_Day 10 - Hitting the Road

This will be quick because we are really drained. The dr. decided this morning that he should get a consult from Chapel Hill on Levi's condition and possible Hydrocephalus. His head is growing more rapidly than it should be. This puts pressure on his brain and causes issues of course. The doctor in Chapel Hill believes Levi needs to have a reservoir put in. When he gets large enough we will have to go back again so he can get a shunt put in that will drain the fluid to his abdomen. That would be permanent and would need to be revised at times.This all of course is very disappointing news to us. We know that we have no control over it. At first we thought we were leaving today then it was going to be tomorrow. The final word is to leave next Wed for surgery on Friday. This decision was made because Levi has a higher white blood cell count and needs to be on antibiotics long enough to ensure there is no infection. We do have the green light to rush him up there any time if his condition worsens. As much as we dont want to wait until next week thats not an option we are /excited about either.

Of course we believe that God can heal him before he needs the reservoir. We also understand that may not be in his will. Please join us in prayer for healing. Please pray for the fluid in his head to start flowing naturally. No matter what happens we believe God is in control. We accept whatever happens whether we understand it or not.

Thanks for your support

Trent & Anjie

Month 3_Day 9 - Rough

Trust in him at all times, o People; pour out your hearts to him, for God is our refuge. Psalm 62:8

This has been one of those days. We have been riding high for so long it seems. We were bound to come back to earth. Its far from the worst day we have had though. We must abide in Him to find rest. We must look to Him as our refuge. We must pour out our hearts to Him. That's an interesting concept actually. How often do I really just pour my anxioties out to Him? I usually do that with friends or family but not to the God of the universe who created me. He invites us to have that type of dialogue yet we neglect that. It seems crazy really...He wants to be that best friend that we turn to first. Have you considered that? Thats a beautiful invitation to recieve. Have you accepted it?

The doctor weened Levi's flow on his nasal canula some today. He didn't tolerate that very well. He had a lot going on today. He started OT where they will work with him on his suck swallow reflex. The PT also started where he will get some exercise. Honestly he couldn't even tolerate the PT so they will start another time. He is havng trouble keeping his oxygen saturation up and is having dips in his heart rate. Please pray that this gets resolved soon. On a side note the doctor is also still keeping a close watch on his head circumference. He is not out of the woods for Hydrocepelus.

For my prayer warriors

Levi - Get rest. No infections. No head swelling. Learn to suck and swallow!

Trent & Anjie - Peace



Month 3_Day 8 - Thankful

Ephesians 5:20 giving thanks always for all things to God the Father in the name of our Lord Jesus Christ,

We are thankful today for a lot of good news. We were prepared for the worst because it seems with Levi nothing comes the easy way. Thanks for praying for us if you did. Truth is we really should be more thankful than we are. It's really easy to get caught up in worry and negativity. In actuallity we have plenty to be thankful for. We have a beautiful little boy who is growing and progressing quite well. We have great friends and family to support us. God has provided for us financially also. It's still hard sometimes to put it all in perspective.

Levi had some good results on his labs. He had a great blood gas that proves he is doing great on the nasal canula. His heart scan was negative meaning he isn't enlarged from all of the fluids and medications he has been on. Thats all great news. His brain scan was a little harder for me to see good in. The great news was that he does not have hydrocepelus. This was a great concern we had so its a relief to have it ruled out. The little bit of news was that was hard to handle was something we already new. As the brain bleed is resolving Levi is losing some of his brain tissue. As the body moves the clotted blood out it eats the tissue also. There is no way of telling if this is done or still happening. There is also no telling what this means for his future development. Please be praying for this development. Please pray that he will continue to have no swelling on his head. That he will compensate for the lost tissue.

For my Prayer Warriors

Levi - No infections, continued growth, No swelling, Healing of his brain.

Trent & Anjie - trust



Month 3_Day 7 - Anxious

Matthew 6 ^25(AP) "Therefore I tell you,^(AQ) do not be anxious about your life, what you will eat or what you will drink, nor about your body, what you will put on. Is not life more than food, and the body more than clothing? ^26(AR) Look at the birds of the air: they neither sow nor reap nor gather into barns, and yet your heavenly Father feeds them.^(AS) Are you not of more value than they? ²⁷And which of you by being anxious can add a single hour to his^(AT) span of life?^{[g] 28}And why are you anxious about clothing? Consider the lilies of the field, how they grow: they neither toil nor spin, ²⁹yet I tell you,^(AU) even Solomon in all his glory was not arrayed like one of these. ³⁰But if God so clothes the grass of the field, which today is alive and tomorrow is thrown into the oven, will he not much more clothe you,^(AV) O you of little faith? ³¹Therefore do not be anxious, saying, 'What shall we eat?' or 'What shall we drink?' or 'What shall we wear?' ³²For^(AW) the Gentiles seek after all these things, and^(AX) your heavenly Father knows that you need them all. ³³But^(AY) seek first^(AZ) the kingdom of God and his righteousness,^(BA) and all these things will be added to you.

 ^34(BB) "Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.

I think I really needed to just read this again tonight. We are both so anxious all of the time lately. Its almost worse when he is doing well. Its just so hard to believe after all of the ups and downs. It just wears you down until you think you cant fight the anxioty any longer. This is truely the test of a lifetime. It makes it all worth it to hear stories about how you guys have been encouraged. It expecially makes it worth it everytime we get to stare into his little eyes.

Tommorow we get labwork, head scan & heart scan info back all in the same day. Please say a prayer for our anxioty when you get a chance.We know its out of our control and comepletly in His control. Our hearts are willing to believe Him but our flesh is so weak right now. Levi is still doing well on the nasal cannula. He is still holding at 3lbs too.

For my prayer warriors

Levi - good test results. No swelling anywhere, No infections, Good with feedings.

Trent & Anjie - mental rest and no worry



Month 3_Day 6 - High Flow

Sorry it late so this will be quick. Levi got moved from the cpap to the high flow nasal cannula. This is a great step in the right direction. I will post pics tomorrow. His head is not covered for the first time since coming off of the vent. Please pray for the head scan, heart scan & eye exam coming up this week.

Month 3_Day 5 - If the Ring Doesn't Fit

If the ring doesnt fit thats a reason to celebrate. No changes were made today. Levi is still progressing. He has head and heart scans on Monday so we are anxious about those. Please pray for good outcomes and peace for us. The doctor is worried about too much fluid retention so she increased his diuretics.



Month 3_Day 4 -

No changes were made today. Levi continues to improve on his oxygen requirements. We are hoping next week he will move from cpap to nasal cannula. He was 2lbs 15.6 oz tonight. Thanks again for all of the prayers. good night.

Month 3_Day 3 - Only Human

Jeremiah 17:9 The heart is deceitful above all things, and desperately sick; who can understand it?

 

This may not even be necessary but I feel lead to explain myself and I believe I can speak for Anjie as well. There are two thoughts by those of you reading this blog. Some of you that have known me for a while probably can't believe I am writing some of these things. I have done many things that may have hurt you or contradicted what I am saying here. Some of you who are reading this have never met me before or barely know me. You may be thinking that I am a great Godly example. You may not see my flaws at all through my writings.

 

So who is the real Trent? Well unfortunately I may have to admit I have been both at times in my life. I have definitely made many mistakes. I also strive everyday to become a better man. I strive to become more like Jesus everyday that I walk on this earth. Yes you could probably call me a hypocrite at times. That's because I don't always rely on God's strength but instead walk in my own flesh. I am the type of person who wears his feelings on his sleeve. The beautiful thing about God is that he forgives me. If we surrender ourselves and submit our will to him he washes it all away. That doesn't give me the right to sin without conviction. I can't walk around doing what I want when I want and expect to grow closer to Him. 

 

What I am trying to say is...please realize that Anjie & I are not looking to be put on a pedestal of any kind through our words or actions during these times. We are so humbled that God is using us through this event to touch lives. The unfortunate truth is that we opened our lives to everyone. We are living in a fish bowl now. If we profess these things to you I promise that we believe them wholeheartedly. At the same time please realize we will make mistakes. We are sorry if at any time our actions do not always match up with our words. Please do not see that as a reflection on our God. He is everything that we have said He is and MUCH more. We have plenty of rough times and I do not mean to make any other impression. This is the most difficult time either of us has ever faced. We love each of you and thank you for your support and understanding.

 

So for Levi things are going well. We are waiting to hear more about his liver labs. First glance didn't show major concerns though. A quick update on the vaccinations. These can be a point of contention for people as I realized doing some reading. This will have to be a decision Anjie and I will have to make. We will most likely not advertise these things further. Just so you know the doctor did recommend holding off until at least another month. One thing I really would like to praise God for especially. Levi hasn't had any swelling on his head. This is just a great blessing! Thanks for praying so much for that.

 

For My Prayer Warriors

 

Levi - No infections. Progress breathing. Progress with feeding. Good results on liver tests.

 

Trent and ANjie - Rest



Month 3_Day 2 - Medical Update

Levi is still doing well on the cpap. His liver ultrasound showed nothing abnormal. So far so good...more test to come. He got an ND (sp?) tube put in today. This is a deeper feeding tube that goes into his intestines and should help with the bad reflux he has been having.So far that seems to be helping.

Month 3_Day 1 - Small Victories

Let them give thanks to the Lord for His unfailing love and His wonderful deeds for men,
For He satisfies the thirsty and fills the hungry with good things. ~Psalm 107:8-9

Yep today is Levi's two month birthday. What a great blessing to have him in our lives this long. We hope for many more days, months, years...God has really blessed us.

We must continue to steady ourselves during this time. We must continue to hold fast with our faith only in Him who provided Levi

life. We must continue to believe that His purpose for our family is much larger than this. We thank you all again for your love and prayers during this tough time. I know some of Levi's staff from the hospital read this blog. You should all know how important you are to us. You have been wonderful blessings. Levi would not be where he is if not for your love and appreciation for these babies. We realize that Levi has a long way to go. We still have to celebrate these small victories. Please join us in celebrating!

As far as Levi's medical side. He has some issues to overcome. He needs to improve with his breathing. He needs to grow and become less dependant on the oxygen. The doctor is concerned about a few things that are leading her to study his liver. She is thinking its just premature but she needs to rule out other issues.

For my prayer Warriors

Levi-Improved breathing. No infections, Good feedings.

Trent & Anjie - Rest & Peace



Month 2_Day 28 - Beautiful Things

Every time I get a chance to sit with Levi and stare for a while this is the song that comes to my mind. I said I would post some more of Gungor's music. I think we must have listened to this song a hundered times in the first week of Levi's life. He really does make beautiful things. I never thought until Levi came along that I could be so in awe of God's creation. To see the perfect innocence within a baby is a beautiful thing. To realize through Levi how much of a miracle life is...that's a beautiful thing. To realize through this tough time how reliant we really are on God...that is also so beautiful. I could go on and on but you get the idea. When He cleanses us from our sins he makes us beautiful again.

Levi has done well this weekend. He did have one episode last night when we were home. He almost got himself put back on the vent. We are thankful that he decided to start back on his own with out needing it. He is still on the cpap. He is supposed to get vaccinations this week. We are not all that sure about those with him in such a fragile state. The doctors seem confident though so I guess we have to trust that. He hasn't really gained any this weekend. Levi still have a long way to go. We really appreciate the continued love and support.

For My Prayer Warriors

Levi - Improved lungs. Continued digestion. No infections. His eyes to develop. Grow.

Trent & Anjie - Patience



Month 2_Day 27 - Pictures

I am just not up to blogging. Here are some pics. He is still doing well on cpap. Please keep praying! He was 2lbs 12.4oz tonight. We are so close to 3lbs!

Month 2_Day 26

Sorry I am to tired to blog tonight. He is still growing. He is back on the cpap and doing well.

Month 2_Day 25 - Great Night

He covers the sky with clouds, he supplies the earth with rain, and maketh the grass grow on the hills.- Psalms 147:8

I am very tired but we had a really good evening with Levi. He had to get his bed changed out. We took the opportunity to put some clothes on him and take a few pics. I also got to hold him while they changed it out. This was one of the most surreal moments I remember. It felt so good to just sit there and look at him.

 

As far as his day he did well. He was still kindve wet in his lungs. they decided to wait to put him on cpap tomorrow. He has weighed 2lbs 10 oz for the last two nights. I waited to post it because we didnt believe it last night. He really hit a good spurt this week. This is really the best way for him to get off of the oxygen support. He needs to continue to grow.

 

For My prayer Warriors

 

Levi - To get to cpap. To grow. No infections. Better breathing.

 

Trent & Anjie - Patience



Month 2_Day 24 - God is Good

Before you go any further please watch this video. Anjie & I are new to Gungor's music but we have become big fans quick. Sometimes the strangest things can cause you to examine your faith. Their music is very thought provoking in its nature. Its hard not to laugh if you really watch the video. If you examine the lyrics though it can illicit a different response. Anjie & I would like all of you to know that we believe God is love & God is good. He can't be boxed in & He isn't a religion. He does want a relationship with you no matter what your background. There is no sin large enough that he can't wipe away. Jesus already did the work because otherwise we would be lost. Just take some time to examine your faith large or small. Take the time to get to know him through his word instead of through what someone may tell you about him. You may find out that God is not exactly who you think he is. He will speak to you if you truely seek to know Him.

Sorry for the rants but sometimes I just get pumped up. God is so good to us. I just can't help but to share what He is doing in us. Levi had a rough day overall. His eye exam just proved he has premature eyes so they will come back later. After the exam he was irritated for a while. He had a couple of episodes today. He forgets to breath when he poops believe it or not. This causes him quite a bit of trouble. He will grow out of it though. He is still growing but I will wait to post another weight.

For My Prayer Warriors

Levi - To improve in his breathing. No infections. To grow. To get over his issue stated above.

Trent & Anjie - Peace & Patience



Month 2_Day 23 - Man in the Mirror

Psalm 139 1 O Lord, you have searched me and known me!
2 You know when I sit down and when I rise up;
you discern my thoughts from afar.
3 You search out my path and my lying down
and are acquainted with all my ways.
4 Even before a word is on my tongue,
behold, O Lord, you know it altogether.
5 You hem me in, behind and before,
and lay your hand upon me.
6 Such knowledge is too wonderful for me;
it is high; I cannot attain it.

Have you really ever stared into the mirror and examined yourself? I don't mean to make sure your hair is okay or you make up is good. I mean have you ever examined yourself for who you actually are? Most of us are afraid to do that. Most of us are scared to death actually know. I know I had an idea before but I never could have imagined how God would break me down. Through this experience he is showing me who I really am. Through this experience he is showing me who is in that mirror. The guy that I have always been afraid to face. I was afraid because I wouldn't want to admit to myself how flawed I really am. God knows that He has to expose our weaknesses in order to truely teach us. He has to expose them to us in real ways that we can't deny. Its like the first step in rehabilitation in admitting you have a problem. I am thankful that God has chosen me. I am thankful that he loves us that much. He doesn't have to do that for us. He really wants a relationship with all of us. We just have to allow Him to remove that barrior of sin. In my case I am not talking about salvation. In my case I am talking about sanctification. Even as believers we tend to hold onto sin which can hender our growth in Him. I hope to continue to grow closer to Him every day that I walk on this earth.

Levi had a pretty rough day. He needed blood today. This required an IV to be put in. He didnt tolerate that very well. His oxygen requirements were up all day. He finally seems to be settled down. The blood really helped with his heart rate being up. He is continuing to really grow. You can see it on him now. Its very obvious from a quick look how much weight he is putting on. Levi gets his eyes examined tomorrow. Please pray for that. Eye days apparently can be rough. We should know in the morning if his eyes are developing well with all of this oxygen he has required.

For My Prayer Warriors

Levi - To progress with his breathing. No infections. Growth. Eye test.

Trent & Anjie - Peace & patience

7 Where shall I go from your Spirit?
Or where shall I flee from your presence?
8 If I ascend to heaven, you are there!
If I make my bed in Sheol, you are there!
9 If I take the wings of the morning
and dwell in the uttermost parts of the sea,
10 even there your hand shall lead me,
and your right hand shall hold me.
11 If I say, “Surely the darkness shall cover me,
and the light about me be night,”
12 even the darkness is not dark to you;
the night is bright as the day,
for darkness is as light with you.

Month 2_Day 22 - His Love

More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God's love has been poured into our hearts through the Holy Spirit who has been given to us.

—Romans 5:3-5

 

I have no idea what level of suffering we are going through.Things could definatly be so much worse. Its really wearing on me going to work all day and then coming here all evening. I am not trying to complain just being honest. With Levi being only 2lbs 6oz its obvious we have a long way to go. At this point I think we both need prayer for patience and perseverance. God has seen us through to this point & we have to trust Him to continue with that same consistency. His love is unconditional. He does have plans for many good things to come to us & Levi through this. It continues to amaze me that Levi has made it this far. At this point I don't have alot news to report to people when they ask. I hope things stay that way and Levi progresses this way from here on out. I pray that we all have much more character when this is all over.

Today has been about the same. Levi actually went from the cpap back to the non invasive mask. We never got an explanation of why. We assume over night he struggled a little bit. They are being very cautious to not let him step back to being intubated again. The non invasive gives him the back up he needs to not go backwards n status. He is continuing to eat and grow. He is dealing with a minor amount of reflux towards the end of his feeds.

For my prayer warriors

Levi - To stay off of the vent. To progress in his resp. status. No infections. Grow.

Trent & Anjie - Rest & Patience

 

Month 2_Day 21 - Real Quick

I am still just mentally drained. Levi is still doing well. He is still on the cpap for now. He is being watched very close. They do not want him back on the vent. If needed he will go back to the non invasive mask for a little while to rest. Either way we are ok with it. We are so proud of him. His temp and heart rate have been up some today. Its hard to tell what is causing that. Its not a feverish temp so they are keeping the temp down in his bed to compensate. Otherwise things are staying about the same.

 

For my prayer warriors

 

Levi - Stay off of the vent. No infections. Reduced heart rate. Grow.

 

Trent & Anjie - Rest

Levi wearing another type of cpap. They try to switch him around so he doesnt scar up. Different mask have different pressure points.



Month 2_Day 20 - He Is

Jn. 3:27 A man can receive nothing unless it has been given him from heaven.

I was able to spend some time with Levi this morning. I don't often get to hang out with him by myself. During that time I meditated on some of God's promises. One thing that struck me was God's sovereignty over everything. We like to operate as if he is in our our pocket. In reality He is far larger than we could fathom with our little minds. He has given us such a blessing in the gift of Levi. We must give him the glory for Levi's progression. It is purely by his hand that Levi is being healed. It is purely by his hand we are being refined in our walks with Him.
Rev 4:8 "...Holy, holy, holy, Lord God Almighty, which was, and is, and is to come. "

Levi is still doing great on the cpap. He is a little higher on his oxygen but thats to be understood. Its ok that he is rebounding a little. He is still tolerating his feedings. He will be getting protein added in now. Please pray that he will tolerate this. It tends to slow them down in the digestive process. He is almost done with his steroid course. This is good because his blood pressure is up.  This should also allow him to start growing more. Levi measured 1ft 2inches long tonight and weighed in at 2lbs 5.6oz.

For my prayer warriors

Levi - Work towards getting off of the cpap. No infections. tolerate feedings.

Trent & Anjie - Rest & peace


 

Levi right after getting his head washed



Month 2_Day 19 - Wow

I am worn out from a long week. Just a quick update. Levi had another big day. He transitioned to the cpap mask today. The vent got rolled out the room. I am trying to hold my joy in but its impossible. I want to be cautious because he can always take steps back. Lets pray thats not an issue. He has done great on the cpap so far. He also went up on his feedings again. I will keep you guys up to date over the weekend on his progression with the cpap.