Homebound

I wanted to write and give everybody who has not talked to us a quick up date on Jax. He came home Tuesday night after a long day of training for Nathan and Amber. He is currently doing great right now. He has his first Dr.'s appointment today in Gainesville with his new pediatrician so we hope that goes well. Keep praying for Jax, Nathan, and Amber. Being home is great but it's also a very heavy load on Nate and Amber with all the medical attention he still needs at this time; furthermore, also having big sister, Mattie's help is keeping them busy also:) Speaking of Mattie, she is adjusting very well to having Jax home. She wants to love and kiss him all the time! I was a little nervous to how she would react to her new brother but she is doing great.

home

Praise God Jax is scheduled to come home next week!

Jax is doing GREAT

Jax was moved to his new room yesterday and it even comes with a shower so we can spend the night. He is stable on his feeds with no spit ups and is using the bathroom by himself. He is a 8cc now and has never made it past 5cc without problems. Praise JESUS!

improved

Jax surgery went well and he looks so very good. he is at 7cc and no spit ups. he is using the bathroom on his own. God has blessed us once again.

going in to surgery now

surgery

Jax has a surgery today to take the pick line out of his head and put it in his chest. Please pray all goes well. He is doing good thank you for your prayers.

Dr.'s News

Praise the Lord! Talked with the doctor last night and he said they would probably move forward and put a feeding tube in his intestine. This is not a very invasive surgery and there is a small chance for infection. This will also allow him to get off of the "gatoraid". It will still take time but not as much time and he can come home on the feeding tube. He will also take some milk by mouth due to needing it to go into his stomach and will stay on the anti-acid meds to keep the acids in his stomach from causing infection and him from throwing up. But above all else he may be coming home soon! Please pray that this all works for him and the surgery goes well. Thank You All so very much for the continued prayers!

new room

Jax is going to be under the care of the GI surgeon and maybe moved to a special room. He is also having kidney reflux and can not take his milk. The doctor did not give us much hope yesterday due to his current condition but that is also her job to prepare us for the worst. But we know he is under God's care only. Lots of information for one day but he now has his own doctor and specialist to be with him only. Please we need you to keep praying! Thank You, Love you all.

The doctor's still have Jax at 6cc's and he is having spit ups when they give him his medicine. They will run a lower GI today to see if his kidneys are causing the spit ups. They say this sometimes happens to all babies and can be fixed over time or he may need surgery when he gets older. The good thing is that he is tolerating his feeds and his spit ups only appear to be correlated to his meds. Please pray that his kidneys are functioning properly. Thanks, LOVE all of us

Hey Jax!

Dear Jax,

Since I haven't been able to come see you in a few days I wanted to write you a little message to let you know I miss you! Mommy and daddy have told me how well you are doing and I'm so happy to hear this wonderful news. I'm so proud of you for staying strong and all the courage you have! I am praying for you to get better daily and I can't wait for you to come home so we can see you all the time!

We love you so much!

Love,
BB

:)

Praise you our Almighty God! I am amazed at what your prayers have done for our family and I thank you all from the bottom of my heart!

Healer

Jax's GI came back PERFECT. The doctor said he did not even see a scar where the surgery was done. PRAISE YOU OUR HEALER! not sure what is causing the spit ups but they are going to try again with 5cc tomorrow.

test

Jax is having another upper GI today to look for why he is spitting up. Please pray that the results come back good like last time and they can up his feeds again. TY

4cc's

Jax had some spit ups at 5cc's so they gave him a rest and dropped him back to 3cc's. Yesterday they moved him back to 4cc's. Just spoke with the nurse and she said he has not spit up and he did another poopie on his own. Small set back but this is the first time he has tolerated 4cc's without spit ups. Normal babies spit up but because Jax is on medications to keep him from having reflux this is a sign of a problem. He is progressing every day and we Praise God for this. It is in God's time and not ours so we will wait till he is ready for little Jax to come home. I am still at peace with God's will for Jax and I refuse to worry about set backs because there will be some. The amazing thing is we are almost positive that he will not have to have another surgery. God has healed him from this and will continue to get him ready for us when we can bring him home. Thank You Dear Lord Jesus for hearing our prayers!

spit ups

Jax has begun to spit up on his 5cc's. At least he made it to 5 this time. Please pray for us and our little man. We want him home so bad! All we need is for him to eat and digest. Thank you

progress

Jax is doing great due to all the prayers THANK YOU JESUS! still no spit ups and is at 5cc's please pray he remains taking his milk this week ty

waiting on God to send Jax home

Jax had his first poopie last night without any help. Praise God for his almighty power and healing touch. I know Jax has been healed but has some work to finish at the hospital. Hopefully he will be sending our little man home soon. The may up his feeds today, this is where we run into a problem at 4cc's so please pray for no spit ups! Thanks to all of you and your faithfulness to our family. Love you all!

feeds

It appears that Jax's intestines are not moving fast enough for his food to process. The doctor said that this is odd for a baby in his condition because usually it moves too fast and nothing is processed. They have stopped his feeds again to let his body rest. Please pray that his intestines will begin working as he is getting older now. The doctor told us not to worry and we are holding on. I know Jax is in Gods hands and his time. I will not let the devil take my faith for God is the only one who can heal Jax and bring him home to us healthy. Love you all.

God is our Healer

Jax had his first real poopie yesterday ;) I know that God has already healed Jax and is already fullilling his promise for Jax to touch peoples lives and be a great man and live for God. Thank you all for helping our family, we love you and appreciate you very much!

Today

Going to keep it short, I promise ;) Here with Jax, Nate is holding him now. He is at 3cc drip and 5cc 2x a day by bottle. So far no spit ups and he is having stools that were better than before. They are waiting until Monday to go up on his feeds but they are taking it slow. He is getting treatment for the "Gatorade" he is getting to help his liver function stay strong. Just pray that he does not have any liver problems in the future (as a special request). Ty and we love you all very much!

I will sing Praise no weapon forged against me shall remain!

When God and I spoke this morining I was reminded that my flesh is still of this world and God is in complete control. I have no control over the things of this world, I must trust our Lord and Savior and his plans for the future of my children. God opened my eyes to the great plans he has for my life and now the life of the generation to come. It is my duty to raise my children to fear and love the Lord. That is my reason for living so that both my children and I can grow in the knowledge of how love, forgiveness, and the importance the lives of others are to God. Jax is doing great compaired to a lot of other children in the hospital. Jax is in God's hands and not mine. Forgive me for the doubt of the devil and keep the prayers coming! Every prayer you pray for our family is truly heard and appreciated. I spent 7 hours today holding my GIFT from God. I did nothing but sit and think of the wonderful love and power God has already delivered. We love you all and appreciate you very much. May God bless your lives as he has ours.

worries

Jax appears to have another infection. He started having bradies yesterday and the doctors have not came in today. Looks like they will not start his feeds today and start antibiotics. His results will not come in until tomorrow. His white blood cells are low and he was given blood last night. He has not had anymore bradies since then. Will update once I speak with the doctor today. His stomach is still soft so they are not afraid that it is in his intestins but they can not be sure. I know that I keep asking for prayers and you are already praying for him but please get on your hands and knees today and ask that this not be another infection. If he contines to get the infections the antibiotics may quit working. We want him off of the liquid as soon as possible because it does affect his liver. They check once a week on his liver and he is not showing any signs of jondice.

Dear Savior,
I pray that you continue to put your healing hands on my little man and give him strength. I thank you for your continuious protection and his strong body. I pray that he does not have to come home with any tubes and that his health will grow so that he may come home safe and I will not miss out on any more of my babies life. I just want to hold and cuddle with him and be the mother for my son that you have blessed me with. I pray that I may be the mother to my children that will raise them to know and understand that you are all powerful. Thank you for my friends and family and all that do not know Jax but are praying for him. My love for you will continue but I need strengh at this time. In the name of Jesus Christ our Savior, Amen

Thanks to God and our Savior Jesus Christ

Thank you God for our daughter and son
Thank you God for our family and friends
Thank you God for allowing your son to die and rise again to allow us to live for you
Thank you God for your forgiveness and continuious love
Thank you God for laying your hands on our son
Thank you God for answerd prayers
Thank you God for allowing us to know everything is in your time
Thank you God for changing our lives
Thank you God for using our son to change others lives

Thank you all

Sorry for the lack of information. Jax had his upper GI and it appears that his feedings are going through but there is scar tissue at his incision sight. No news on if he will have another surgery since his feeds are going through. The doc has put him on no feeds until tomorrow and we will start him all over with 1/2 a cc for a few days. The doctor believes his intestines are not constricting and is giving them a rest. Thank you for your continues prayers. We have a great and powerful God who will bring us through this and send Jax home just as if nothing was wrong. I believe that and it appears that you do too. Jax has already touched so many lives including ours. God has a great plan and he has already begun to make Jax a powerful source of life changing experiences.

Pray for Jax today

I know Nathan and Amber are extremely busy at the moment so I wanted to post telling everyone to say a little prayer for him today. He is not taking his feeds well, he keeps spitting up after every feed, so dr.s have taken him from around 14cc's to 2cc's.
The hospital just called to say they are going to do an upper GI, to see if there is a blockage in his intestine. Pray that whatever the problem is that he doesn't have to have surgery again. Jax is doing so good, we really don't want anymore set backs. Pray for Nathan and Amber that the Lord will give them the strength they need to get through another valley and of course for Jax that God will heal him from whatever is going on right now.

Quick Update

Sorry again about the gap in posts! Time flies by and before you know it, we have not posted in a few days. The feedings are continuing to go well, and Jax is now up to 14cc every 3 hours. He is taking his bottle well and even has a therapist that works with him to make sure he is sucking, breathing, and swallowing with no trouble. The pooping is still going okay, but they could be a little more solid. The frequency is good so the feedings are not just rushing through him, and he should be adsorbing a good amount. Jax will go up again on his feedings tomorrow, and just continue to increase the amount as long as he tolerates it and his poops are good.

Its important that Jax maintains and increases steadily on his feedings because the milk nutrition versus IV nutrition is like being on a seesaw. As his milk volume goes up the IV volume goes down. We want the IV nutrition down as soon as we can because extended exposure can cause liver damage, but we are a long long way away from that.

I am guessing that he will need to get up to around 50 - 60 cc of milk to get 100% off the IV nutrition. That is if he is gaining weight off the milk, which I am sure he will be based on what we have seen so far. Jax is at 14 cc now so he is about a quarter of the way there. Once you get on a roll the increases come more frequently but if there is sign of concern they hold him where he is for a day and then continue as long as everything looks good.

I met a lady on the elevator today that worked at Children's today that tried to show me a shortcut to the parking garage and got me totally lost....on our way out we were talking about Jax and she said isn't the Lord just wonderful....Look at everything he has done for that baby....God is amazing isn't he....I was like yes yes and yes. She also said and you know He is going to continue doing great things as long as you keep trusting Him. We were where we thought I was going by then so I said thank you and she left to another floor in the garage. I thought that was pretty cool and a good reminder of what God has already done and how you can see Him working every day on Jax.

Please keep praying that his feedings continue to go well and he can get of the IV nutrition as soon as his ready. Please also keep praying that he will digest his food and adsorb his nutrition from the milk, and continue to gain weight. Please pray that God will shield him from infection and sickness. We thank God for everything he has done so far and thank you for your prayers and support along the way. Amber and I could not have made it if it were not for the support of our families and friends. We love you and we will try to update more often and not so long!

Quick Update

The feedings are going pretty well and they decided to increase him to 5cc every 3 hours. He is sill fluctuating on his residuals but things look pretty good. He is also pooping (I know gross) but a good thing for Mr Jax because this means things are passing through. Keep the prayers coming because they are probably going to let him keep increasing as long as he keeps everything processing. We will keep you updated as the week goes on.

bottle feeding

Nate got to feed Jax out of a bottle for the first time the other night. He is still taking his milk this way even though he is not digesting it he is learning to eat. This is a GREAT thing because he knows how to suck, swallow, and breath on his own. The nurses at NEGA said he would have to be able to do these things before he could come home. This is a sign that his brain is functioning very well. He is having less and less residual and the night before last he had none. The residual is a very light yellow and a little milky so this is very exciting. When I fed him last night he drank the bottle so fast he almost drank all 5cc's when he is only suppose to have 3. Our little angel is fighting with everything he has and God's hand is on him we can all feel it.

As far as we know he will still have another surgery but the testing will not begin until Monday. What would they all say if he just starts eating, the swelling goes down and he is healed? I asked God to heal him with his hands and he is showing signs he is doing so. (in his time) I have not given up on God and his power please do not either because someone in that hospital may need to see God's GREAT power and Jax may already be doing God's will.

love song

"Bring me to the cross, where your blood poured out. Bring me to my knees, Lord I lay me down. Rid me of myself, I belong to you. Oh lead me to your heart."

Prayer

Dear God our Father and Protector,

I pray now for your healing touch. I pray that you put your hands on Jax and take his pain away. God you are the creator of miracles and your love for us is beyond our understanding. I pray that I may also understand your time and not mine and continue to hold on to your promise for Jax. I am posting my prayer dear Lord so that others may know your power and love. I love my son but you allowed your son to die for us and our sins. I only ask that you will heal Jax, in your time, and make him a great man who will do great things for you. You are the all powerful and all knowing creator and I trust you will keep your promise and teach me to be patient in the process. I only ask that this not be a lesson to me but a testimony for everyone because we all believe in your healing hands. I thank you Lord for my family and friends. I thank all that are praying for us, even people we have never met. I thank you Lord for providing strength to this family and allowing us to know you will never leave us nor forsake us. In Jesus' name I pray, Amen.

Good Update

We got a good update today. The x-rays did not show any signs of a blockage!! The feeding tube was sitting a little too low and they think that was why he was having the green residuals. The nurse tonight said that she got a tiny bit of yellow residual tonight and that is a good sign that the tube was the cause of the bad residual. If things continue to go well over the night he will start feeding tomorrow again. Keep the prayers coming that he will accept his feeds and his belly will process the food and pass it along.

mountains and valleys

The time between updates have been pretty eventful, so sorry for the lack of updates. Overall Jax is still doing well, but it seems like a 2 step forward and 1 step back process. He is still on antibiotics but his infection seems to be gone based on his lab work. He is active, he has no oxygen support, he has no IV's other than his pick line, his color is great, he has not had a Brady in a few days and all of his stats look great.

By Monday the infection became under control enough to start feeding and we were excited to get back on the right track. He had feeds for about 12 hours and unfortunately they did not go so well. He had a large amount of residual that built up and they had to stop the feeding because it was not flowing through properly.

Today we had a good opportunity to talk to the nurses and they are not sure what the doctor will advise, but they may just give him a little break and try again later or start doing some upper GI tests. The GI tests will show if there are any blockages in his belly from the surgery that may need to be remove.

Its crazy how many mountains and valleys you go through in this process....One day you feel like your doing great then the next you feel like things are going in the wrong direction. I just thank God that there has been so much to be grateful so far and remind myself that there is nothing I can do but be there and Jax is in God's hands.

Please continue to pray for Jax. Pray that God will touch his belly and give him strength as he learns to digest and process his food. Pray for no blockages or bottlenecks in his belly. Pray for protection from infection and illness. Thank you all for your continued support and prayers!!!

Holding Steady

Just wanted to let you know that Jax is still doing well and seems to be fighting off the infection. We are still waiting on the blood results, but we should have some news tomorrow. There have been no more bradys and his stats are normal so that is a good sign also that things are moving in the right direction. They will probably keep his antibiotics on for about a week and try to start the feedings back when he is good and well. He looks great and we get to hold him a lot when were up at the hospital. The nurse and docs are all awesome, one thing that is awesome is to see how God works in other people to help in a time of need. Whether its the wisdom that he gives the doctors and nurses or the love that he shows in our family and friends, its an amazing thing to witness from our perspective. We are truly thankful for the prayers and the support. We love you!