Three months ago today God blessed us with a beautiful son we named Nehemiah. Hard to believe it has only been three months. Our lives were so forever changed by God through him. Thank you, Jesus, for Nehemiah. Give him a kiss from Mommy and Daddy.
Sunday, May 27, 2012
Friday, May 25, 2012
I have been having a bad week. I was ready to give up and crawl in a hole. I did not feel God. I miss my sweet baby. And, I just did not feel connected to My Love. But, a friend reached out to me and shared this scripture. I read it and asked again for a touch from God and for His help in connecting with My Love. He answered with a great night with My Love and the strength that connecting with him brings, and I feel I might can face another day. I am still begging Him [Jesus] to stay close to me and to ease the pain, but He gave me hope just when I was ready to give up and crawl in a hole.
Thank you God for the answered prayer, thank you for strength from my husband, thank you for my husband, and thank you for using my friend to reach out to me with your word.
Luke 11:9-10 New Living Translation (NLT)
“And so I tell you, keep on asking, and you will receive what you ask for. Keep on seeking, and you will find. Keep on knocking, and the door will be opened to you. For everyone who asks, receives. Everyone who seeks, finds. And to everyone who knocks, the door will be opened."
Wednesday, May 16, 2012
“For the LORD your God is living among you. He is a mighty savior. He will take delight in you with gladness. With his love, he will calm all your fears. He will rejoice over you with joyful songs.”” Zephaniah 3:17 NLT
Could Jesus be rocking Nehemiah and singing over me like I used to sing over Nehemiah? That is a comforting thought even though I would really like to be the one holding Nehemiah. Oh how I ache for him! But, he and Jesus could be singing together. That's a nice thought.
Tuesday, May 8, 2012
I discovered a new song today. The title is Glory Baby, and it is by Watermark. You can find a play button on the bottom of my blog to hear it for yourself. I played it over and over today. It speaks just what my heart is feeling. How I long for my baby, Nehemiah! And, how I long for my home in Heaven! I feel so out of place here!
I never understood how people longed for heaven… before. I would wonder how we were supposed to long for a place we did not know. I did not long to die, and that is what longing for heaven made me think of. Heaven felt so far away, and I wanted to participate in life here with the things I knew. I mean, singing praise songs is great, but I was not ready to do that full time, so I did not long for Heaven.
But, I have changed. I still don’t long to die. I am not suicidal (don’t worry, My Love), but I long for Heaven because precious Nehemiah is there. My arms ache to hold him! I know Jesus is holding him, and I know Jesus is perfect and all that, but it doesn’t feel right for his mommy not to be holding him. I am his mommy, and everything in me feels like I should be holding him…
Thank you, Jesus, for letting me hold him... Thank you for the sweet times we had. Thank you for sharing him with us... even for such a short period of time... That time introducing him to praising you in the NICU and RNI was the sweetest, most precious time of my life.
Anyway, by the second time I heard this song, I swear, I did not hear the word baby. My brain and heart change the words instantly now, and I hear Nehemiah’s name. So, what I hear is more like this…
Glory Nehemiah you slipped away as fast as we could say Nehemiah… Nehemiah…
You were growing, what happened dear?
You disappeared on us Nehemiah…Nehemiah...
Heaven will hold you before we do.
Heaven will keep you safe until we’re home with you…
Until we’re home with you…
Miss you everyday,
Miss you in every way,
But we know there’s a
day when we will hold you.
We will hold you.
You’ll kiss our tears away,
When we’re home to stay.
Can’t wait for the day when we will see you.
We will see you.
But Nehemiah, let sweet Jesus hold you (just like we talked about)
‘till mom[my] and dad[dy] can hold you…
You’ll just have heaven before we do.
You’ll just have heaven before we do.
Sweet little Nehemiah, it’s hard to
understand it ‘cause we’re hurting.
We are hurting,
But there is healing.
And, we know we’re stronger people through the growing.
And in knowing-
That all things work together for our good.
And God works His purposes just like He said He would…
Just like He said He would…
I can’t imagine heaven’s lullabies,
and what they must sound like.
But, I will rest in knowing, heaven is your home…
Monday, April 30, 2012
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”
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
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.
“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
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 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.
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.
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.
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.