Following God with Courage

"This is my command--be strong and courageous! Do not be

afraid or discouraged. For the LORD your God is with you wherever you go." -- Joshua 1:9 (NLT)

Monday, April 30, 2012

Hope & Thanksgiving

I put my hope in you LORD. 
Psalm 31:24
“Be strong and courageous all you who put your hope in the LORD.”

Psalm 33:22
“May your faithful love rest on us LORD, for we put our hope in you.”

Psalm 38:15
“I put my hope in you LORD; You will answer, Lord my God.”

Psalm 39:7
“Now, LORD, what do I wait for? My hope is in You.”

Thank you for Nehemiah, and thank you for the time we had with him.  

Thank you for My Love.  

Thank you for the day we had together loving each other yesterday.  

Thank you for being with us and loving us. 

Thank you for HOPE.

If I Stand...

Life feels empty and shallow without my little man, Nehemiah.  Oh what I would give to still be taking care of him!  But, he has gone home to rock with Jesus, so I can’t.  I miss him so terribly.  I miss rocking him, kissing his forehead, changing his diapers, praying over him, singing to him, telling him bible stories, and telling him stories of dreams of life outside the hospital.  He used to look up at me like, “Really Mommy?  I want to do that and anything else with you, Mommy.  Anything with you must be great, Mommy.  Keep telling me stories, Mommy.” 

I used to tell him about the sun and what it feels like and how it is fun to go to the beach and feel the sun kiss your skin.  I told him that it feels like God is reaching down and touching you and giving you a kiss.  He now knows what it feels like to be held and touched by God… much more than I do. 

My love and I went to the beach yesterday for a day-cation.  His daddy needed to get away from work, and we needed to connect and comfort each other.  As we were there, I thought of Nehemiah and the stories that I used to tell him in the hospital.  I thought of Nehemiah up there with Jesus, and I thought maybe he and Jesus were loving me and wanting to touch me as I felt the sun touch my skin. 

Would you please tell Nehemiah again how much his Mommy loves him and that I long to see him again one day.  Thank you so much for the time you gave me with him.  I know that you and heaven are better for him that me and earth.  His body was so week, and he had so much pain in his short life here with me.  You can comfort him more than I could, but I need you to comfort me now that he is with you because he has left a huge hole in my heart.

Josh bought me a necklace last night.  It is a special reminder of a good day that we had together missing Nehemiah and loving each other.  It has a tree and a pearl on it, and it reminds me to stand strong and live strong rooted in Jesus Christ. 

Rich Mullins wrote and sang:

“So if I stand let me stand on the promise
That you will pull me through
And if I can't, let me fall on the grace
That first brought me to You
And if I sing let me sing for the joy
That has born in me these songs
And if I weep let it be as a man
Who is longing for his home”

This is my prayer today.

Jesus, if I stand let me stand on the promise that you will pull me through as I long for baby Nehemiah.  And, if I can’t, let me fall on the grace that first brought me to You.  Not if, but as I weep for Nehemiah, let it be as a mommy who is longing for her home with You.

Sunday, April 22, 2012


On April 13, 2012, Nehemiah, my precious, perfect, gift from God, died in my arms when I was trying to feed him.  It was the worst day of my life.

I am trying to forget those moments and remember all the good times we had together... all the times that I told him about Jesus and introduced them so that Nehemiah would know Him when he went "Home."  When Nehemiah met Jesus for the first time, I wanted him to say, "Oh, I know you.  My mommy loved you and told me all about you."

I took several videos while Nehemiah was living.  I knew his life would not be long on this earth.  Doctor after doctor warned me of that, and I did not want to regret not taking videos.  A friend put the videos together for me to show at the funeral so that I could share my little man with all of his friends and family who never got to meet him in person.

And, here he is...

Saturday, April 21, 2012

Baby Rhodes

Josh and I had to go to a specialist yesterday for a special ultrasound. The results were not what we wanted to hear, but I want to share and ask you to pray for our precious little one and us as we make decisions in the next few weeks and months. Josh and I are trusting God with the final results.

The specialist found what he calls four markers that he wants to watch. They are in the baby's brai...n, kidney, heart, and umbilical cord. At this point, it could be serious or it could not. We just don't know. They want to do more testing to try to further determine what we are facing, but Josh and I wanted to digest the information they gave us before making more decisions. The doctor said that was fine. This specialist group we saw was very good about being concerned with how we were taking it and what we as the parents needed.

We are trusting God with the outcome and we would still love for you to pray with us.


Nehemiah Jonathan Rhodes

Nehemiah Jonathan Rhodes
“Comforting Gift from God”

What is in a name?
Sometimes the hand of God…

“The king granted my requests, for I was graciously strengthened by my God. … I told them how the gracious hand of my God had been on me… And they were encouraged to do this good work.” (Nehemiah 2:8,18 HCSB)

And God graciously strengthened and encouraged with each day of our little Nehemiah’s life.

God said, “Haven’t I commanded you: be strong and courageous? Do not be afraid or discouraged, for the LORD your God is with you wherever you go.” (Joshua 1:9 HCSB)

And, He has been with us... and will be with us…

“For… not even death…will have the power to separate us from the love of God that is in Christ Jesus our Lord!” (Romans 8:38-39 HCSB)

We will always love you, Nehemiah. You were our perfect, comforting, gift from God.

With Love, Mommy and Daddy

Easter 2012

Ponderings from one thankful mother’s heart:

Over the years my dad has been known to ask questions like, “What does Christmas mean to you this year?” So this weekend I have been thinking about Easter and what Easter means to me from a whole new perspective and with great appreciation.

Three big things stick out to me this year.

I have been reading through the bible at a slow pace for quite some time. My readings these days are from Leviticus. There are pages and pages or rules and laws that are humanly impossible to keep. It would be impossible for me to have a good relationship with God and ask for any help from Him if I had to keep all of those rules. I couldn’t keep it all straight. Jesus came and changed that though. So, as I ponder Easter, I am thankful for what He did, and that I can have relationship with my Heavenly Father because of Him.

As I sit here typing, I am missing Josh terribly. He has had to work and has been sick, so he is not with Nehemiah and I. I know God is with me. (Thank you to everyone who has been praying for us. That is one area God has abundantly blessed me. He has let me feel Him close through all of this.) But, I feel alone because I miss Josh so terribly. As I feel this and think about Easter, I keep remembering how Jesus asked the Father why he had forsaken Him. (Matthew 27:46) He understands what it is like to feel so alone. He did it for me, so that I could come to Him and the Father and have a relationship with Him. It makes me so very thankful for what He did. I couldn’t and wouldn’t do it for someone who wasn’t even born, yet.

Nehemiah has had a bad day. He has had a tummy ache most of the day that has left his heart rate racing dangerously high, and it has been very hard for me to watch him suffer so and not be able to do anything about it. He is my only son. As I ponder Easter this year, I have a new understanding and appreciation of John 3:16. God gave His only son to suffer so that if I believe in Him, I have eternal life. Wow. He sent his only son to suffer so that I could live. Nehemiah is my only son. It kills me to watch him suffer, but God knows how I feel. And, I can have the comfort of that from Him because of what He and Jesus did.

Jesus Loves Nehemiah

Jesus Loves Nehemiah

Jesus loves Nehemiah this I know,
For the bible tells me so.
Little ones to him belong,
They are week but he is strong.

Yes, Jesus loves Nehemiah.
Yes, Jesus loves Nehemiah.
Yes, Jesus loves Nehemiah,
The Bible tells me so.

Jesus loves Nehemiah when he’s good,
When he does the things he should.
Jesus love Nehemiah when he’s bad,
Even though it makes Him sad.

Yes, Jesus loves Nehemiah.
Yes, Jesus loves Nehemiah.
Yes, Jesus loves Nehemiah,
The Bible tells me so.

4/4/12 Nehemiah Update


Nehemiah is doing amazingly well. We are actually hopeful that we will go home soon. Just a few days ago they were talking about transferring us back to the NICU in Mobile, but now they are talking about educating me and just sending us home.

Josh and I are amazed and humbled at how God is working in our lives.

Nehemiah is recovering from the heart surgery quite well. The surgery did not go as well as we had hoped, but it was still good. The surgeon had hoped for a better result from the PA (pulmonary artery) Band. He was not able to restrict the flow of oxygenated blood into the lungs to the degree that he had hoped, but he was able to make things better for Nehemiah. Nehemiah is breathing on his own. He came off of the respirator over the weekend and was placed on a nasal canella. Yesterday, he came off of all respiratory assistance, and he has done great. Today, the nurse turned off Nehemiah’s bed. This means that he is not receiving any heat from the bed. He has tolerated this great. We tried this over the weekend, but he couldn’t tolerate it. His core body temperature dropped, but he has done great today. His temperature has been good at each assessment. Nehemiah’s only tube is the nasal feeding tube. He is trying to take a bottle, and he is trying to learn to nurse. But, both of these methods wear him out before he has taken enough food to grow and not go hungry.

So, we are looking at going home with the feeing tube. The doctor and nurse practitioner are looking into methods of home health so that we can just be released from here to our house. Part of this will be teaching me how to use the feeding tube and introducing me to a nurse that will make regular home visits.

Josh and I are ecstatic and scared. We are thankful to God for the mighty work he is doing in Nehemiah’s life. Nehemiah has surprised the doctor’s each step of the way. It is because God has chosen to work in Nehemiah’s life this way.

Thank you for petitioning God with Josh and I. You have blessed Josh, Nehemiah, and I greatly. Thank you.

The next obstacles that Nehemiah faces are learning to eat, getting strong enough to eat all of his food through his mouth, growing and gaining weight, and a hernia. If the hernia does not heal or go away, he could be facing another surgery at some point. This will mean going on the respirator again, and each time he goes on it there is a fear that he will not come back off or his lungs will be damaged too much to come off again. The doctors and nurses tell us that all of these obstacles are common for babies his size and especially with his condition, but they are large obstacles for Nehemiah, and the doctors do not really give us any hope that he can do it. We know he can not by himself, but if God chooses that it is His will for Nehemiah to do it, he will. We are praying for our little man and the obstacles he faces. We ask that you please continue to pray with us.

Thank you for all the support you have given thus far. Thank you. Thank you. Thank you. We just can not say it enough.

3/5/12 Nehemiah Update


We have been talking to doctors for days. It is amazing how many doctors Nehemiah has. We have spoken to a geneticist, several neonatologists, and a cardiologist, so far. There may be more to come, but these doctors are treating Nehemiah’s most pressing issues.

I have tried to think of the best way to tell you what they have told us, but there just doesn’t seem to be a good way. The prognosis is not good. The neonatologist says that the daily management of his care is not too difficult, and there will be good and bad days, but in the end, long term good results are much more difficult to achieve.

The geneticist told us that Nehemiah has a genetic defect called Trisomy 18. It caused the heart defect which is causing the lung problems. There are, also, other defects it has caused. It is a problem that he has had since conception, the reason he is so small, and the reason he did not have enough nutrients coming through the umbilical cord (which caused him to have to be born by emergency c-section). The statistics on children with Trisomy 18 are staggeringly awful. It is a miracle that he was alive when he was born and that he has lived to be one week old.

The heart defects are VSD and PDA. VSD stands for ventricular septal defect. I can not remember what the cardiologist said PDA stood for, but both of these defects make it difficult for the oxygenated blood to make it out of the heart and lungs to the rest of his body. That is why there is such a blue tent to his skin. Doctors call the non-oxygenated blood “blue blood”. His “blue blood” is making his skin look more blue. The oxygenated blood is the scarlet red that we are all used to seeing. There is a surgery or series of surgeries that they can do to try to fix his heart, but he is not strong enough for it at this time, and the Trisomy 18 is going to make it hard for him to grow and get strong enough.

Because so much of the blood is not flowing the correct direction, he has a problem with fluid. Fluid collects around and in the heart and lungs because they are trying to re-oxygenate blood that has already been oxygenated. They are currently giving him laysix to try to help him get rid of some of this fluid. So far, it is helping him. They have recently started feeding him through a feeding tube into his stomach trying to help him gain weight. And, we are trying to get him strong enough to come off of the respirator. The respirator damages his lungs the longer it is in.

Josh and I just don’t know what to do. We are having to make some very hard decisions. We pray for God to give us the wisdom we need to follow Him. We pray for His will to be done. We do not want our little baby boy to suffer. We love him so very much. We want him to have a chance at life, and we cherish every minute God gives us with him.

Thank you all for your prayers and support. We do not know what we would do without them. We know God is answering your prayers and helping us through this time, and we know that we have had the sweet moments we have had with our son because God has answered your prayers. Thank you.

2/29/12 Nehemiah Update


Nehemiah had a long day of fighting for his life yesterday.

We received partial results for two of the tests that were run Monday.

He has a large VSD (Ventricular septar defect) in his hart as well as some small ones. The cardiologists will be giving recommendations as needed. Right now they are just watching him.

One of his kidneys is larger than the other one, but so far, he is having normal output, and that is a good sign.

He developed a problem with his blood yesterday. It was described to me as being like jaundice. They put him under a UV lamp to treat that. Josh had to have sunglasses to hang out with him.

I still have not gotten to see him again, and I am finding it hard to get the doctors to talk to me. None of them have been by since they took him to the other hospital, and the one that I tracked down on the phone talked way over my head. My doctor (OB/GYN) went to see Nehemiah yesterday, and this morning he explained some of the things the other doctor had said. I am thankful that God led me to him and that I have had him as my doctor. I am hopeful that I will be recovered enough to be released from the hospital soon, so I can go see Nehemiah and maybe get to talk to his doctors face to face.

Thank you all for your prayers and support. This has been very hard to deal with, and we cherish the prayer support. I know it has been helping us. We can feel it. Thank you.