First Bottle

Levi had his first bottle today. He really only got a tiny little bit out but thats because they thickened the milk to protect him from aspiration. He will slowly work up to taking more. The therapist said he did very well. Yes we are very excited about this...



Month 4_Day 7 - Please Pray!

We have a special prayer request tonight. Levi makes a lot of noise when he breathes which is called stridor. It seems harmless but actually is a sign of him working hard to breath. This could either be a soft airway or stenosis which is a scarred airway from the vent. Either way Levi needs to grow out of it. The soft airway is the quicker fix. The stenosis is more likely to end in surgery. This issue is basically going to keep him from drinking from a bottle or getting off of his oxygen. Please pray that he will grow and grow out of this issue. If he were to need surgery we will end up right back at UNC. As good as the care is there we really dont want to go back. If we can join together in praying specifically for this that would be great!

I also couldnt resist showing Levi in his big boy crib for the first time.

Month 4_Day 6 - Home Safe

We made it home all safe and sound. It was a great feeling to see familiar faces at NH. Levi has settled right in. We are excited to see him start working on some important goals that will get him home. We still have a while but getting over the neuro issue is a big step. If you read this tonight please pray for Levi's eye exam in the morning. There is a chance he will have another laser eye surgey tomorrow. Hopefully whatever the doc at UNC saw is no big deal. Also please pray for Levi as he starts his therapies.The PT will help him with his muscles and future development. The OT will be to work with him on oral stimulation and feeding. He has to be taking full feeds from a bottle before he can go home.

Thanks for all of the prayer and support. This has been a very very difficult journey for us. It has brought out the best and worst of us. We have been tested in an unbelievable way. Unless you have been through a similar situation I am not sure we could ever explain in words. In the end we truely thank God for testing us in this way. We are obviously not perfect. We have purposefully shared our impefections here so that others may one day see this story as a comfort. So that people can know that its natural to have these emotions and struggle with your faith during tough times. Anjie and I are growing in our faith but are far from where God wants us. We ask that you continue to pray for our family. Levi has a long journey ahead and we are with him every step. As I mentioned before I will not be able to continue updating this blog at this pace. I will definately keep you guys updated on this journey. Please keep checking in on us as we love knowing Levi has a huge family out there routing for him.

Thanks from the McCumbees

Month 4_Day 5 - Please Get Us Home!

There really isnt much to report on Levi. He is doing really well still. We are supposed to be leaving at 10am tomorrow. If any emergencies happen they may bump us though. Please pray for that to not happen. They apparently have a full schedule. We never got an answer from the UNC staff if NH could come get us tomorrow if this doesnt work out. We are even sure if they asked or if that is an option. Its been very difficult with all of the uncertainty surrounding this entire trip. Its like one more test I guess...

Month 4_Day 4 - Easter

Levi is doing very well. We are seeing some sort of improvement every day now. Today he showed no signs of reflux. He is recieving milk into his stomach again now for the first time in over a month. His reflux had been so bad they had to advance the feeding tube past his stomach. This is a big step if he can continue to handle it. He is requiring no oxygen now just flow. So basically he is breathing room air but still needs some pressure to hold open his trachea. This is also something he will grow out of.

Please pray specifically for all of the transport stuff to work out. All of this talk and no one has confirmed with New Hanover if they will take us back! That phone call will be made tomorrow.

Month 4_Day 3 - Happy Easter

Isaiah 53

 ^1(A) Who has believed what he has heard from us?^[a]
   And to whom has^(B) the arm of the LORD been revealed?
²For he grew up before him like a young plant,
   ^(C) and like a root out of dry ground;
^(D) he had no form or majesty that we should look at him,
   and no beauty that we should desire him.
^3(E) He was despised and rejected^[b] by men;
   a man of sorrows,^[c] and acquainted with^[d] grief;^[e]
and as one from whom men hide their faces^[f]
   he was despised, and^(F) we esteemed him not.

 ^4(G) Surely he has borne our griefs
   and carried our sorrows;
yet we esteemed him stricken,
   ^(H) smitten by God, and afflicted.
^5(I) But he was wounded for our transgressions;
   he was crushed for our iniquities;
upon him was the chastisement that brought us peace,
   ^(J) and with his stripes we are healed.
^6(K) All we like sheep have gone astray;
   we have turned—every one—to his own way;
^(L) and the LORD has laid on him
   the iniquity of us all.

 ⁷He was oppressed, and he was afflicted,
   ^(M) yet he opened not his mouth;
^(N) like a^(O) lamb that is led to the slaughter,
   and like a sheep that before its shearers is silent,
   so he opened not his mouth.
⁸By oppression and judgment he was taken away;
   and as for his generation,^(P) who considered
that he was cut off out of the land of the living,
   stricken for the transgression of my people?
⁹And they made his grave with the wicked
   ^(Q) and with a rich man in his death,
although^(R) he had done no violence,
   and there was no deceit in his mouth.

 ¹⁰Yet^(S) it was the will of the LORD to crush him;
   he has put him to grief;^[g]
(T) when his soul makes^[h] an offering for guilt,
   he shall see his offspring; he shall prolong his days;
^(U) the will of the LORD shall prosper in his hand.

¹¹Out of the anguish of his soul he shall see^[i]

and be satisfied;by his knowledge shall^(V)

the righteous one, my servant,
   ^(W) make many to be accounted righteous,
   ^(X) and he shall bear their iniquities.
^12(Y) Therefore I will divide him a portion with the many,^{[j]
   (Z)} and he shall divide the spoil with the strong,^[k]
because he poured out his soul to death
   and was numbered with the transgressors;
^(AA) yet he bore the sin of many,
   and makes intercession for the transgressors.



Happy Easter to all of you guys. We sure wish we were going to be at Scotts Hill for all of the excitement tomorrow. Just remember its not about bunnies or eggs its about atonement for our sins. I thank Him so much for providing a way. He doesnt want us to mourn His death but to celerate the fact He defeated death! He made intercession for US the transgressors.

Levi is still doing well. Please pray for growth, reduced oxygen support & and transport home on Tuesday.

Month 4_Day 2 - Sleepy

Isaiah 53

 ^1(A) Who has believed what he has heard from us?^[a]
   And to whom has^(B) the arm of the LORD been revealed?
²For he grew up before him like a young plant,
   ^(C) and like a root out of dry ground;
^(D) he had no form or majesty that we should look at him,
   and no beauty that we should desire him.
^3(E) He was despised and rejected^[b] by men;
   a man of sorrows,^[c] and acquainted with^[d] grief;^[e]
and as one from whom men hide their faces^[f]
   he was despised, and^(F) we esteemed him not.

 ^4(G) Surely he has borne our griefs
   and carried our sorrows;
yet we esteemed him stricken,
   ^(H) smitten by God, and afflicted.
^5(I) But he was wounded for our transgressions;
   he was crushed for our iniquities;
upon him was the chastisement that brought us peace,
   ^(J) and with his stripes we are healed.
^6(K) All we like sheep have gone astray;
   we have turned—every one—to his own way;
^(L) and the LORD has laid on him
   the iniquity of us all.

 ⁷He was oppressed, and he was afflicted,
   ^(M) yet he opened not his mouth;
^(N) like a^(O) lamb that is led to the slaughter,
   and like a sheep that before its shearers is silent,
   so he opened not his mouth.
⁸By oppression and judgment he was taken away;
   and as for his generation,^(P) who considered
that he was cut off out of the land of the living,
   stricken for the transgression of my people?
⁹And they made his grave with the wicked
   ^(Q) and with a rich man in his death,
although^(R) he had done no violence,
   and there was no deceit in his mouth.

 ¹⁰Yet^(S) it was the will of the LORD to crush him;
   he has put him to grief;^[g]
(T) when his soul makes^[h] an offering for guilt,
   he shall see his offspring; he shall prolong his days;
^(U) the will of the LORD shall prosper in his hand.

It was because He was perfect that He could even do this. He came and lived a flawless life so that he could atone for us and our imperfection. There is no other way to come before a perfect and holy God.

Levi Had another good day today. His eye exam did show that he may need a follow up laser surgery. We are trying to get a straight answer on when he will be sent back. They are trying to get Neuro to clear him for Tuesday so that he can get back for eye day at home on Wednesday. Please pray that it all works out and we get home as soon as possible.

Month 4_Day 1 - Three Months

Isaiah 53

 ^1(A) Who has believed what he has heard from us?^[a]
   And to whom has^(B) the arm of the LORD been revealed?
²For he grew up before him like a young plant,
   ^(C) and like a root out of dry ground;
^(D) he had no form or majesty that we should look at him,
   and no beauty that we should desire him.
^3(E) He was despised and rejected^[b] by men;
   a man of sorrows,^[c] and acquainted with^[d] grief;^[e]
and as one from whom men hide their faces^[f]
   he was despised, and^(F) we esteemed him not.

 ^4(G) Surely he has borne our griefs
   and carried our sorrows;
yet we esteemed him stricken,
   ^(H) smitten by God, and afflicted.
^5(I) But he was wounded for our transgressions;
   he was crushed for our iniquities;
upon him was the chastisement that brought us peace,
   ^(J) and with his stripes we are healed.
^6(K) All we like sheep have gone astray;
   we have turned—every one—to his own way;
^(L) and the LORD has laid on him
   the iniquity of us all.

 ⁷He was oppressed, and he was afflicted,
   ^(M) yet he opened not his mouth;
^(N) like a^(O) lamb that is led to the slaughter,
   and like a sheep that before its shearers is silent,
   so he opened not his mouth.
⁸By oppression and judgment he was taken away;
   and as for his generation,^(P) who considered
that he was cut off out of the land of the living,
   stricken for the transgression of my people?

The silence was maybe the most amazing part. Jesus could have called legions of angels to rescue Him. He had the power to strike all of His enenmies down. He never had to take one of those beatings or shed one drop of blood. He did it all because He loved us. He did it all to provide us a way for reconcillation with our Father. Isn't that beautiful? No longer do we have to live in bondage but instead have to choice of freedom. I dont know about you but I choose freedom! Following Jesus an be difficult sometimes but I will choose Him anytime over bondage to this world and its ruler.

Levi had a great day today. No apnea or periodic breathing at all. Thats amazing consdering his past. He gets his bandage off tomorrow. If things go well the NICU is pushing for a back transfer to NHRMC on the first of next week. Please help pray us back to Wilmington. All indications are that Levi absolutely needed the shunt. His head has changed dramatically now that its not under pressure. So please keep praying for the same to continue so we can get back home.

BTW why didnt someone tell me I had my months screwed up? Levi hit three months old today!

Month 3_Day 31 -

Isaiah 53

 ^1(A) Who has believed what he has heard from us?^[a]
   And to whom has^(B) the arm of the LORD been revealed?
²For he grew up before him like a young plant   ^(C) and like a root out of dry ground;
^(D) he had no form or majesty that we should look at him,
   and no beauty that we should desire him.
^3(E) He was despised and rejected^[b] by men;
   a man of sorrows,^[c] and acquainted with^[d] grief;^[e]
and as one from whom men hide their faces^[f]
   he was despised, and^(F) we esteemed him not.

 ^4(G) Surely he has borne our griefs
   and carried our sorrows;
yet we esteemed him stricken,
   ^(H) smitten by God, and afflicted.
^5(I) But he was wounded for our transgressions;
   he was crushed for our iniquities;
upon him was the chastisement that brought us peace,
   ^(J) and with his stripes we are healed.
^6(K) All we like sheep have gone astray;
   we have turned—every one—to his own way;
^(L) and the LORD has laid on him
   the iniquity of us all.

Verses 5-6 are some of my favorite in the bible. What a perfect explanation of easter and what it means. To think that he suffered and died for all of us. It wasnt just for the sin that had happened but also for the sin that we were later to commit. We are all guilty for hanging Him on that cross. We are all in need of His peace. Just to think of all of the suffering Levi has gone through so far doesnt compare. Sure he will have scars to remember it. Jesus actually remembers every lash and every nail. That makes everything else seem so trivial. We need to wake up!

Levi is recovering well. It was a nerve racking day today as they took him off of the vent. He has had much trouble in the past coming off. This time he really did great. He amazes me every day as I watch him grow and see how tough he has become. Thank God for seeing him through to this point. Right now he is resting comfortably and is on the nasal cannula not the cpap! Please pray though because every day is a new struggle.



Month 3_Day 30 - Surgery Day

Isaiah 53

 ^1(A) Who has believed what he has heard from us?^[a]
   And to whom has^(B) the arm of the LORD been revealed?
²For he grew up before him like a young plant,
   ^(C) and like a root out of dry ground;
^(D) he had no form or majesty that we should look at him,
   and no beauty that we should desire him.
^3(E) He was despised and rejected^[b] by men;
   a man of sorrows,^[c] and acquainted with^[d] grief;^[e]
and as one from whom men hide their faces^[f]
   he was despised, and^(F) we esteemed him not.

 ^4(G) Surely he has borne our griefs
   and carried our sorrows;
yet we esteemed him stricken,
   ^(H) smitten by God, and afflicted.


He came here to bear it all. To take all of our sin upon his shoulders. He did it because He loves us that much. He wants us to come to Him and live under his yoke. His yoke is not a yoke of bondage but a yoke of freedom. It is easy to bear. Its easy because he already defeated that sin that has us chained. Thank you Jesus!

Levi did finally have surgery today. The morning started off rough. We walked in at 730 to hear he wasnt having surgery today but was bumped to Friday for higher emergency cases. It was heart breaking after trying to get him to this point for three weeks. We were ready to see him get relief. Our doctor got just as irritated and went to bat for us. After a phone call he was back on the scedule as an "add on". This meant if they could fit him in it would still happen. At about 230 Levi went down for surgery. He had a VP shunt placed and by 5:00 we got to see him. He was already awake but groggy. He is on the vent and doing well. His head is partially shaved and the shunt was much more visible than I thought it would be. In the end it just makes him more unique and more of a miracle. Thanks for your prayers. Please pray for recovery so we can get back home! You dont need to pray for us to get rest because we are wiped out.

Month 3_Day 29 - Another Surgery Tomorrow

Isaiah 53  ^1(A) Who has believed what he has heard from us?^[a]
   And to whom has^(B) the arm of the LORD been revealed?
²For he grew up before him like a young plant,
   ^(C) and like a root out of dry ground;
^(D) he had no form or majesty that we should look at him,
   and no beauty that we should desire him.


Isaiah 53 is a very appropriate scripture to meditate on leading up to Easter. Please join Anjie and I in this time of appreciation for what Jesus did for us. There is so much here so I plan to spend the week eating up these truths two verses at a time. Just to think of all of the prophesy in this passage which was fullfilled is amazing. He came in the simplest form as a fragile baby such as Levi. He did not belong here. He never had to come. He made a choice of submission to fullfill the law and provide a way for us to reconcile with the Father. How awesome a savior He is? With no special form He was not to be worshiped for his human appearance but for His unmatchable majesty as God of our universe. Thank you Jesus for your sacrifice that I may live.

Levi is going into surgery tomorrow morning and right now Anjie and I are at peace. We believe Levi needs this to live a fruitful life. He needs the pressure on his brain relieved so that he can better develop. The surgery involves peeling back his scalp. Then they will drill a small hole through his scull in which a valve will be inserted. After that tubing will run under his skin to his abdomen. This will divert the fluid which is not naturally flowing in his head. We all make CSF but ours drains constantly. Levi is more clogged up because of the bleed he had at birth. I say all of this not to gross you out but so you will see the magnatude. Please pray for Levi anytime you can tomorrow. The surgery is scheduled for 930 am. I will try to provide an update sometime tomorrow. We both got to hold him today and we will be there early to see him off. Its not going to be an easy day.

Month 2_Day 28 - Better Day

We all had a little better day today. Anjie had a baby shower in Goldsboro. It was very hard for her to leave the hospital but I think she had fun once she got there. I had some dad time with Levi and took a nap too. Levi did alright but is still very touchy. He had  one bad episode but other than that did well. He hasnt shown to need another tap yet. The surgery should be tuesday. After that he will get his sutures out 10-14 days later. If all is well we were told he would get to go back home. We really hope that is still the case. Its up to the docs here. The only thing that could cause him to miss the surgery Tuesday is infection. His cultures were started at 4 this morning and are so far negative. Hopefully nothing shows up in the next 12 hours and we will be cleared. Please pray for the surgery to happen tuesday and for a good recovery.

Month 2_Day - Isolation

This will be one of those quick ones. Levi had a decent day. It started off rough so he had another tap done. That really helped alot this time. It is not great that the fluid built back so quick. He is scheduled for surgery on tuesday now. Its not exciting that he needs permanent intervention but it will be a great relief once that pressure is dealt with. He really does well after the taps which give us a picture of the future.

Anjie and I are not doing well up here. We feel very isolated and uncomfortable. The care is not nearly as family centered as back home. We haven't really been able to enjoy Levi much. The care is definately excellent but the atmosphere doesnt scream for family involvement. Its not worse its just so very diffferent than the first three months. We must find a way to adjust and still enjoy our son somehow. Please pray for the surgery and for us to find comfort.

Month 2_Day 26 - Different World

It really has been a rough couple of days so far. Its just so much change and so much busier. We have people coming by alot more to talk about Levi which is good. Its also different because we were pulled away from our giant support stucture and moved here where we virtually have none. We are having to rely on God's comfort more than ever. Its a whole new chapter He is forcing us to live out. We have to continue to trust that he will provide for our emotional needs apart from our friends and family. As Christians we always say He is all we need. Do we really believe that? Anjie and I are really getting tested in that respect. This may be much more trying in the end than anything we have experienced to date. Please pray for us!

The tap itself did go well and made a difference in his irritability. He was very touchy all day today though. Anjie & I felt strongly that his anemia was causing this. We have seen it in the past. The idea is to not give him blood unless absolutely neccessary. We want his body to learn how to make it on its own. In the end though the anemia can have the same symptoms as the pressure on his brain. The NP decided to transfuse him to end that speculation. Now if his syptoms continue tomorrow it will be more obvious that its the brain causing them. The neuro team did tell us if Levi needs another tap they will slate him for surgery. Please keep prayig for the fluid to not build. Pray for a good night and good day tomorrow. Levi was 4lb 2oz tonight.

Here are some pics of him in his new surroundings

Month 2_Day 25 - Long Day

I will try to get back to normal soon. Its so much different here as we are trying to adjust. It looks like we will be here a little while. Levi will not be having surgery this week. It will be more of a wait and see approach. He had his ventrical tapped tonight and 20cc of fluid was removed. This should relieve any a pressure and hopefully start some good progession. He handled it well and was able to stay on his same O2 requirement. The big test is whether the fluid builds back up. If it does, how quickly does it take for him to become symptematic again? If its slow he could just have another tap later. If its quick they could consider permanent hardware of some kind. We will be here until his neuro issues are resolved and then we will get transfered back. It all depends on Levi how long that takes.

We arrived to a surprise this morning as Levi was back on cpap again. He had  little of a rough night. The big thing seems to be a difference of practice. UNC doesnt put babies on nasal cannula on the flow he was requiring. He is now on something they call bubble cpap. It seems to be very easy on his lungs. The nurse said since switching to these machines a couple of years ago it has really changed the way that chronic babies like Levi operate. They seem to handle it much better and alot of times go to room air instead of nasal cannula. Its really a big change for us adjusting to everything. All in all we do believe 100% after day one this is where Levi needs to be to get over the hump. Once he does we can't wait to get back to our friends at NHRMC though.

Please pray for the tap to be effective and the fluid to not back up again. Please pray for Levi to continue gaining weight and to progress on the cpap.

Month 2_Day 24 - Safe & Sound

We all made it safely but the day was definately not uneventful. The transport broke down on the way to get Levi. We didnt leave until early afternoon. We werent allowed to follow them so we headed out on our own. About 45 min in Anjie had  shredded tire. We found our way to a shop in Wallace where a nice man named Jimmie put a used tire on for us and refused to accept payment. It continues to amaze me that God wants to build our faith more  more through these events. Around 530 we made to the NICU at UNC to meet up with Levi. He did well on the trip. They started doing some baseline tests so we should start getting answers tomorrow. One of the Neuro team came by tonight. She suggested that there will not be a rush to put permanent hardware such as a shunt in. That would be the last resort. If anything it looks like he will be held for evaluation a possibly a spinal tap to relieve some pressure. We should get to meet with the head Neurologist tomorrow. Thanks for all of your prayers and we will update as we go. BTW we are at the Ronald Macdonald houe so thats one more door that was opened.

Month 3_Day 23 - Road Trip?

We sure hope that we are headed out in the morning. Please pray for a safe and uneventful transport. There hasnt been much change in the last few days. We will try to continue to update you guys often while we are there. Here are a couple of real quick videos. I thought it would help bring some life the the little guy.
Enjoy!

 



Month 2_Day 22 - My Birthday

John  ^4(F) In him was life,^[a] and^(G) the life was the light of men.

I thank Him so much for Life. Not just 30 years of earthly life I celebrated today. Also I thank Him for providing a promise of eternal life. He offered me a chance at redemption even after all I have done to seperate myself from Him. Not only did he give me that amazing choice but he also blessed me so much here on earth. I have a wonderful wife and son. We have a house, cars, money, food, clothes...We live in AMERICA! It can't get a whole lot better than this people. I praise God for all of this. Without Him I am absolutely nothing.

 

Levi had another good day. He is resting well and waiting for his big trip on Wednesday. This of course hinges on a good eye exam that morning.

 

For my prayer Warriors

 

Levi - Good result from eye exam, Safe transfer, good results from UNC trip, no infections

 

Trent & ANjie- peace & rest



Month 2_Day 21 - Uneventful

Levi had a good weekend so its a good thing there isnt much to report. It is definitely alot more fun that I thought to be able to dress him up. He is pretty cute I must say. The doctor is calling Chapel Hill tomorrow to hopefully set everything up for transfer. We are really looking forward to going at this point. We really need some answers on whats going on up in his head. Please continue to pray for a good eye result and then safe transfer to UNC. I am trying to keep this up daily because many people are still checking it everyday. I am looking forward to the day where Levi is so stable I can update you guys for the fun events. Thanks for your vigilance in praying for Levi.



Month 2_Day 20 - Tired

Sorry but I am very tired. Levi had a good day. Please keep praying for good results for his eyes on Wed. Also after that for him to finally get to Chapel Hill for answers on his brain.

Month 2_Day 19 - Better Day

Levi had a better day today. He seems a little tired but his eyes are not as swollen. He got a bath this evening and tucked in for a good nights rest. He is back on the nasal cannula as you can see. Please be praying for his eyes and head. We are not sure when the Chapel Hill trip is happening right now. Please pray for patience for us as we wait for answers. We will get our first answers on Wednesday morning and depending on the results of the eye surgery decsions will be made from there. Other things to pray for would be his lungs to heal and get off of the oxygen & for growth. Thanks for all of the prayers!



Month 2_Day 18 - To God be the Glory

Phil 4:19And my God will meet all your needs according to his glorious riches in Christ Jesus.



What a crazy week this has been. So many things are going on in this journey that we can't even share them all. I have been worrying alot about finances lately. We took a step of faith and mailed in Anjies resignation letter this week. We have no idea what this means or how long she will be out of work. We just know that Levi needs her right now. I also have been worrying about Levi's future medical bills. He will undoubtedly need extra help in certain areas. We have no idea how much help though. I dont know why I am worrying as if I have any control over it. We must believe God will provide for all of our families needs. The crazy thing is at the same time that I am worrying about finances God is laying it on people's hearts to give to us. Instead of believing God and trusting him through his provision so far I just kept worrying. We were struck tonight by a gift we received in the mail. Not that any of them were any less appreciated. This one just struck us because of the words that came with it. It came in an envelope with no return address and no real markings to tell who it came from. On a post it note on the check were the very simple but profound words "To God be the Glory". That just blew us away. Its amazing that whoever gave us this whether it be a person or group of people want no recognition in return. Its not just that though it's the idea itself that we may have let slip. To God be the Glory! Its not about Levi or us or the blog at all. Its about God's glory shining through all of this. He is in control and He is trying His best to get us to believe Him. He is going to provide so we owe it to Him to lay down those financial worrys. Thank you so much to all of you have given out of obedience. You are a huge blessing to us. You are servants of God and he will surely bless you in return.

Levi is still recovering from the eye surgery. His eyes are swollen and he is not fully aware of his surroundings yet. Hopefully he will wake more over night and get back on nasal cannula tomorrow. I will make sure to get some pictures up soon. Levi will have his follow up eye exam next Wed. Hopefully it will show improvement so we can hit the road to UNC. His head is still growing a little too fast so we really need to get up there and get that checked out. Please pray for his head to clear and his eyes to improve from the surgery.