Hurdles

This journey has all been about hurdles. Levi has slowly worked his way over many of them one by one. He has a couple of more to go before he can go home. Obviously he has to stay off of oxygen but so far he is doing really well with that. Levi passed his swallow study today meaning that he was able to swallow a thicker mixture of milk down without aspirating. He is now getting to take the bottle again. THey will be slowly working with him to take all of his feeds by the bottle. He must prove he can do that or else he will need a G-tube to get home. Levi also has to have a hernia repaired before he can go home. Please pray specifically for these things and we will keep you posted.



Amazing Day

After 129 days on oxygen support Levi just spent his first day off of oxygen. He is doing really well without it and seems more comfortable. He has his swallow study tomorrow and we will find out if he can start back with a bottle. If not we will probably have to talk about a G-tube so he can come home. If so he just has to learn to eat so we can go home. Please pray with us that his airway will remain open and that he will pass his swallow study. We are still just so blown away how far he has come from his 1-9 birth weight. Levi has a long way to go but we still believe God has big plans for Levi. We are so thankful that He spared Levi's life.

Welcome Home

We did make it home late this afternoon. Levi is actually doing very well. He is on a much lower flow on his oxygen and his stridor is less. He got settled back in to his original room that he started in. We hope he gets to finish out his NICU journey there. He even got a special welcome home on his wall.



No Room at the Inn - Day 2

There is still no room at NH for Levi. This is obviouly very frustrating to us. We were told they would make space for him but now we are very unsure when it will happen. Please pray for things to open up. We could complain more but our hearts our burdened for another family today.

The Mayo family just lost their son Zack. Please watch this video to learn about his story and say a prayer for Zack's whole family. Especially pray for his Mom, Dad & brother. Anjie and I have seen alot of pain this year but I can't imagine what they are feeling right now.



No Room at the Inn

So I really want to complain but I realize that I shouldn't. Our patience just keeps getting tested more and more. Duke was prepared to send him back today but NH didnt have staff or beds to take him back. We were definately disappointed to say the least. So please pray for everything to work out for tomorrow. The wonderful thing is that we are staying in a great home. We have been taken care of by some people that we had never met and God  orchestrated all of it. He definately is watching out for us. We are so blessed that He loves us so much. The hard part is staying obedient when things dont go as we think they should. He is trying to teach us to relax and submit to His will.

Great News

We got a wonderful phone call this evening on the way back from eating. It was Dr. Toth the surgeon that repaired his eye. She had just examined him and his eye looked excellent. It looks much better than expected and much better than most babies that have this surgery in her words. She said he should not need any other surgeries right now and they will just watch closely as he grows. What a great answer to prayer! So we should be headed back as early as tomorrow afternoon. Things just have to line up with the transfer and New Hanover. Thanks again for praying.

Recovery Day 2

Levi did come off of the vent today. He is doing well so far. The only odd thing is that his resting heart rate is much lower than normal. We arent real sure whats causing that. He is breathing much easier though with the steroids on board. Hopefully tomorrow everything will be normal and we can hold him again. We didnt see anyone from the eye team today. The big thing is the one week check though so please pray that will be good and we can go back.

Recovery

Levi is definately feeling more like himself. He is still getting morphine while he is on the vent so he isnt completly back to himself. He is supposed to come off of it tomorrow. The idea is to get steroids on board first to give him a boost. Please pray for him and Anjie as this is usually stressful to watch. His first follow up eye exam looked very good for on day post op. He shows no sign of infection and his retina is attached. This is great news! God is answering our prayers.

Good Surgery/Rough Day

The surgery seems to have been successful. It looks like his right eye may still be in decent shape after all of this but there is really no way to tell for a while. He came off of the vent right after surgey but is already back on it. He has some significant apnea and stopped breathing for an extended period. They think his airway is irritated and also that the drugs still havent worn off. Hopefully tomorrow he will be off of it again. Levi also tested positive for MRSA which is disappointing  because he has to be isolated for a long while. It doesnt mean he has it in his blood just that its growing on his skin. Alot of people carry it but arent affected. Lets pray that it clears right up with antibotics. Please pray for the next day or two that he will recover and get back to his spunky self. Sorry this is short but I am worn out. We are emotionally drained and definately shed some tears today. Please lift us up also.

Vitrectoy

Levi had a good trip and settled in fine. The eye surgeon already impressed us. She showed up right away to examine Levi. Then she spent a long while with us explaining whats wrong with his eye. She confirmed that his left eye looks good. The right eye has two spots of scar tissue that have detached the retina in those areas. Levi does respond to light in that eye which is a good sign. So the surgery involves three tiny inscisions. One for a tube to pump the eye up and keep it inflated. One is for a small scope to see what is going on. The other is for a microscopic cutter. She will remove the scar tissue that is causing the issue. She will also remove the gel around that area to relax the retina. All in all it should be quick and isnt major as far as surgeries go. The outcome will not be known for a while down the road. The hope is to give Levi some form of functional vision in that eye.

The surgery is around noon. Please pray for Levi and the surgeon. We will post tomorrow with an update of how it went.

4 Months

4 months ago today Levi was born. We are so thankful that despite all of the odds being against him God gave him life and gave us a son. Levi still has a long road ahead. The next leg of the journey starts tomorrow as Duke will come get him to head up for his eye surgery. We are praying that God will spare his right eye so that he will have vision in as he grows up. Right now his retina is still attached but its only a matter of time if untreated that the scar tissue pull it away. Please join us in continued prayer for his airway that it would strenthen as he grows. Also please pray for his feeding issues so that he can take milk from a bottle. We will try to keep you guys posted while we are away. It is an honor to have so many people loving Levi.

Check out Levi in his first swing ride!

Sunday

Just a quick update. We just found out late this sfternoon we are leaving Sunday for surgery on Monday. We will keep you posted but please pray specifically for Levi's right eye. Also pray for safe transport. 

Eye Surgery/Road Trip

So Levi likes it here at New Hanover but since his trip to Chapel Hill he has more of a desire expand his horizons. Apparently he wants to go on tour. Unfortunately he has chosen Duke for his next stop. Levi's eye exam today showed a progression of the traction on his right eye. Thank God the left eye still looks good. So the laser surgery will not help. What he needs can be done at Duke hopefully in the next couple of days. We find out tomorrow when we will be leaving. Please pray for a quick smooth trip and a successful surgery. As you may be able to guess this really hit us very hard today. Pray for our spirits to be lifted. Even the strongest of people can only handle so much.

I hope you like the pics. Levi is very close to 6lbs now and you can probably tell.



Sorry So Late

So the blog website has been in read only mode so I havent been able to post. Thanks to everyone who is still praying for Levi and supporting us. There really hasnt been a lot of news to report anyway so that a good thing. Levi is now 5 lbs 7 oz which is very big to us. He is definately maturing some before our eyes. The physical therapist working with him says he is doing very well. We are working on tummy time where he gets to lay on a pillow out of his crib and play some. He is doing decent with that but since he sleeps on his stomach alot he ends up falling asleep. The doctors sound much less likely to want a trach for Levi. He is progressing some on the oxygen. He is mostly on room air and got weened from 5 liters of flow to 4 liters. This is a good sign he is growing out of his issues. He should get another bronch and swallow study at the end of the month. With this we should see his progression. From there we will know if he may need a G-tube or not. Please just keep praying for growth. Enjoy the pics. A couple of them are from his bath time last night.



Mother's Day

Love is patient; love is kind. Love is not jealous; is not proud; is not conceited; does not act foolishly; is not selfish; is not easily provoked to anger; keeps no record of wrongs; takes no pleasure in unrighteousness, but rejoices in the truth; love bears all things, believes all things, hopes all things, and endures all things. ~ I Corinthians 13:4-7.

This is the type of love I think about on mothers day. Its the type of love my Mom showed me growing up. Its the type of love that I see in Anjie as she cares for Levi. Most of us men just don't come by this that easily. Some how its just natural for moms. That unconditional love is a love that all of us as believers should live out. My heart broke for Anjie this morning as I sat beside her in church. It really is hard walking in there without Levi week in and week out. Its just not natural at all. We just cant wait to go as a family one day. By the end of the sermon though I was very encouraged. Every characteristic that Pastor Phil spoke of in being a Godly mother Anjie already exemplifies. Its encouraging to know that having a wife as such will make my life much easier when it comes to raising Levi up in Christ. He will have a great example to model himself by. This is the same type of example as I had in my mother growing up. I want to thank my Mom for showing me the way. We don't always follow step by step but a I grew older those memories never left and it was easy to find my way back.

Please believe me when I say no news is good news. There really hasn't been a lot to report. Like I said before the main plan right now is to grow. Levi is up over 5lbs now! He still has a way to go and we were told yesterday that there will be no quick move for surgical intervention on his airway as long as we are still seeing progression of some kind. Please just pray from Levi to grow out of his airway issues & his feeding issues. 

Test Results

Just wanted to give an update on the past couple of days. Levi had a couple of studies yesterday. One study was to test Levi for reflux. That one showed moderate reflux but nothing too serious. It seems he is growing out of that issue. The other study was to verify where the milk he was drinking by bottle was going. All of the concetrations that they mixed Levi was aspirating into his lungs. They wrote orders to allow no more bottle feeding untill his passes a swallow study. They are hoping he just grows out of that issue also. The doctor told us today that he will give him a month and if he doesnt overcome it then he will need a G-tube. This would allow us to feed him straight into his stomach untill he grows more. This will allow him to go home.

Today Levi had an eye exam and a bronchoscopy. The eye exam showed about the same as before. The right eye still needs close watch. The bronch was a photographic look down his airway. The bronch was not surprising as we knew there was some amount of damage due to the stridor we hear. Levi has some malacia which is floppiness, some stenosis which is scaring & one vocal cord is weak. The combination of all of this is causing his reliance on the air flow. Hopefully some growing will allow him to get on a lower flow at least to go home. If he doesnt grow out of this in a month he will get a trach.

Of course we dont want him to need either procedure. It is good that there is now a definate plan in place. So we should be getting some resolution to all of this within the next month. Please pray that he will grow alot and not need either procedure.

Recent Pics

Levi has a swallow study, an eye exam & a bronch coming up over the next few days. The swallow study will determine if the milk is going all to his stomach and what consisency it should be mixed at. After that he should start trying to bottle feed more. The eye exam is a follow up but we are hoping for no progression in the right eye which they have been watching.  The bronch will be the insertion of a tiny camera down his airway to see what is causing the stridor when he breathes. Depending on the results we will find out if its an issue he will grow out of or something he will need to back to Chapel Hill for. I am sure you you know what we are hoping for. Please pray for these things and enjoy the pics...



Good Weekend

It has really been an amazing journey the last few months. Its hard for us to even believe how far God has brought us during this journey. We truely believe His righteous right hand is upholding Levi. Not only is He growing Levi physically but He is growing Anjie and I spiritually. I know I can speak for myself that through all that has happened my life has changed. I realize that in general your life changes when you have a child. I am talking about more than that though. I am talking about God teaching us a total reliance. We have felt a large amount of pain over the past few months. We have also been filled with all of the joy we could handle too. Everytime I hold Levi now I forget about all other worries I have. I forget about all of the different ups and downs he has had. All I can do is thank God for this perfect little boy He gave us. He may not be perfect as the world would tell us perfect is. He is perfect in the sense that he is exactly how God made him. We are so thankful Levi is here with us!

Levi really is doing well. He has some things to overcome but these hurdles may not be as large. Everyone wants to know when we are going home. Believe me we would love to know that also. Truth is no one knows that. Levi needs to take all of his feeds from a bottle & needs to be on less oxygen support. Levi is really doing well with the bottle. He took 20cc tonight from his bottle and could have taken more. Please pray for these things specifically. I will get some pics up soon...