My frame was not hidden from You
    when I was made in the secret place,
    when I was woven together in the depths of the earth.
¹⁶ Your eyes saw my unformed body;
    all the days ordained for me were written in Your book
    before one of them came to be.
¹⁷ How precious to me are Your thoughts, God!
    How vast is the sum of them!
¹⁸ Were I to count them,
    they would outnumber the grains of sand—
    when I awake, I am still with you. Psalm 139

I love this verse. It is so comforting to know that God is in control and sovereign over our lives before we even are created. I find this comforting for myself when I feel forgotten or unseen by God and this verse gives me great peace in accepting the LORDs will for Nehemiah's life. 

Nehemiah, my sweet little love. It has been one year since you've been born. A year ago from tomorrow you entered the world and changed our lives forever. It was probably the best day of my life along with the day I married your daddy. The LORD gave us such excitement and peace the day you came into the world. There were so many unknowns, and yet the strongest feelings we had were just excitement on meeting our own little boy we had fallen in love with over the past nine months. We had waited and prayed and waited, and loved feeling your growth and kicks and we had finally made it to the day when we would get to hold you and look into your face and tell you we loved you so much. And we made it! By the LORDs grace you came into this world crying and full of life. Your daddy was with you every second as you were brought into the NICU, he didn't want to leave you for a moment. You were so perfect love, your sweet little fingers and face and toes. We loved every part of you and were so amazed that our son had arrived! Each day we had with you to learn about your little personality and to get to be your parents was beyond precious to us and stays in our hearts and minds everyday. We prayed over you for nine months and 19 days that the LORDs will would be done in your life and that you would be His and that you would glorify Him. We know He has answered. We are thankful He allowed us nine months and 19 days to be with you here on earth and we cannot wait to be with you in eternity. You will always be our son and we are thankful you are safe with the Father. We miss you every day love, you are forever imprinted on our hearts. We love you. -Mommy and daddy

"Losing your Life"

“He who has found his life will lose it, and he who has lost his life for My sake will find it." Matt.10:39



"Last weekend I called a young woman who wrote to me after losing her firstborn son, who lived two days before dying in her arms. His genetic abnormality is likely to repeat itself in future children she and her husband may have.' I want to be a mother,' she wrote to me. 'I want to have purpose and meaning in my life. I want to move on with whatever God has for me- but I don't know how to do any of these things. How do I mourn the possibility that I will never have a child of my own, when that has been my heart's greatest desire for as long as I can remember?'
'Your son has given you an incredible gift,' I told this grieving mom.'He has given you the gift of being forced to reconsider the very purpose of your life. Those who are sailing through a comfortable life at this point have not yet been forced to carefully consider their lives and surrender their dreams. But because you have been shaken to the core, you see clearly that if you cling to your own plans and desires, you will never discover the freedom and joy found in losing your life for Jesus.'
'Master Jesus, I'm afraid of what may happen and what I may have to surrender if I give up my life for You. Give me eyes of faith to see how beautiful and satisfying my life will be as I die to myself and live for You.'" 
-Taken from "One Year Book of Hope" by Nancy Guthrie

Though He slay me, I will hope in Him-Job 13:15

The LORD gave, and the LORD has taken away; blessed be the name of the LORD.-Job 1:21


What more can we say? We have cried out and He has answered. He has done what is right and what is good and what is wise. Not what I have wanted. Losing our sweet boy, our little love, has been the hardest thing I have ever experienced. Holding my baby as he slowly slipped away was the most agonizing thing I have ever walked through. Yet, it wasn't. The LORD was with us. In the pain we had peace and strength. 
I have wrestled with the why. I have cried out for Nehemiah's life since around week 20 of pregnancy. We have cried out, our friends, our families have cried out, has the LORD not heard? But as I've gotten some time to reflect, I see the LORD answering prayer all around us. We have given thanks for the sweet time we had with Nehemiah, we thank God for each moment, each hour we had for those 19 precious days. Each time we got to hold him and marvel at his tiny parts. To look into his eyes and to cherish him. We thank God for taking him quickly, for not allowing him to suffer. We thank Him for making our time with Nehemiah joyful and sweet even with all of the unknowns. We thank God that we were able to be with him as he slipped away. We were able to sing hymns of praise and of comfort and to pray over Nehemiah as he climbed from our arms into the arms of our great and loving Father. Yes, are hearts are broken. Yes, we wake up at night just wanting to hold our sweet boy again.  But we also have peace and assurance that this was God's will for our baby boy and we are so thankful our lives do not end here. We are made for eternity. Nehemiah will never cease to be. We will see him again. And the most glorious, we will be before the LORD worshiping Him for eternity together! We live for the day that we will behold the glory of the Lamb that was slain! May He be praised! Blessed be the name of the LORD.

"But we do not want you to be uninformed, brethren, about those who are asleep, so that you will not grieve as do the rest who have no hope. For if we believe that Jesus died and rose again, even so God will bring with Him those who have fallen asleep in Jesus. For this we say to you by the word of the Lord, that we who are alive and remain until the coming of the Lord, will not precede those who have fallen asleep. For the Lord Himself will descend from heaven with a shout, with the voice of the archangel and with the trumpet of God, and the dead in Christ will rise first. Then we who are alive and remain will be caught up together with them in the clouds to meet the Lord in the air, and so we shall always be with the Lord. Therefore comfort one another with these words."-1Thess. 4:13-18

Praise God from Whom All Blessings Flow!

We found out today that Nehemiah's creatinine level is down to .9!!! It was down to 1.4 yesterday, which we were amazed at because it was 1.8 the day before. The heart Dr.s originally said that his level would have to be below 1 to be considered for heart surgery, and here we are!! The NICU attending has told us that the heart Dr.s would re-evaluate with the kidney Dr.s, but that it doesn't mean that surgery is guaranteed. Nehemiah is on oxygen again because he is desating so much, his little heart needs surgery! They have also put him on antibiotics for a urinary infection that they think is caused by a "pocket" in his kidney that is storing up urine with no outlet. He is scheduled for an MRI tomorrow at 11am for them to get a good look at his kidney and to see if there is anything they can do to increase the function even more. Please pray that all things go according to our Fathers will and that He would guard and protect little Nehemiah. We are blessed to have had two whole weeks with our sweet boy, he is two weeks old today! It is amazing that for the past two weeks we have basically sat in a chair taking turns holding out baby and yet time has flown. It actually seems we don't have enough time! We have to force ourselves to take time to eat and to try and get sleep. It is an exhausting time, but the LORD is providing day by day as he leads all three of us in this wilderness. We know that His will is perfect and that He is with us! Thank you all for your prayers. We know the LORD is hearing and answering before our eyes. How amazing, how awesome is our God!!

Rejoice in hope, be patient in suffering, persevere in prayer. -Rms 12:12

Nehemiah has been with us for 11 days! It seems like days fly by and at the same time we feel as if we've been here a lifetime. Each day has it's ups and downs. Today was a hard day. Nehemiah started desating more frequently today, which means the oxygen levels in his blood were going down- mostly when he was crying, but sometimes even at rest. They took an x-ray of his chest and decided to give him a blood transfusion as his red blood cell count was down. Poor little guy, I hate him having to be poked so many times. His little cry breaks my heart!! It was also stressful hearing his monitor constantly sounding because he was desating. Brad was so amazing, he's so calm and was able to calm him down and sat with him in his lap for most of the day. It doesn't look like Nehemiah will be coming home anytime soon as he is not gaining weight and is having this desat problem. They added formula to my milk to try and add calories so he will gain weight. They also did some more tests on his kidney to see if there is a blockage or something they might be able to fix to have his kidney function better. I am so torn. I really desire to have Nehemiah with us for years and years and yet thinking of all the surgeries he would have to endure breaks my heart. We will trust on the LORD's wisdom. He knows what is best for Nehemiah. We will love him for as long as the LORD gives us, whether days or weeks or years. Please pray that the LORD would be merciful to our sweet boy and keep him from much suffering. Please pray for us that we would have the strength to endure this trial and to continue to seek the LORD, rejoicing in hope, being patient in suffering and persevering in prayer.

We will wait on the LORD!

Had a really good day with Nehemiah today. Our parents both came up yesterday and we all enjoyed just watching and being with our sweet boy. It is amazing that with all the Nehemiah faces, all the unknowns, when we are with him, it is just sweet. Life is just good. What a blessing to just get to know our sweet boy. The head Dr. of the NICU has been talking about possibly discharging Nehemiah at the end of the week if he continues to do well with his feedings and his kidney and heart remain stable. It is very exciting and also nerve racking at the same time. They are just waiting on his kidney to see if heart surgery is a possibility for him, so they figure waiting at home is just as good. Nehemiah is on a feeding tube because they upped his feedings so much and it was taking him so long to finish his bottle, that he was actually burning more calories than he was eating! Brad and I learned today how to put in his feeding tube (which is only done once a month). Right now, we are just trying to live day by day, not worrying about the future or trying to figure out the outcome. It is  a struggle for sure, but we know the LORD of all creation sees us and hears our cries as well as the cries of His people, so we will wait confidently for Him to work, as He is working!!
Praises: Nehemiah is tolerating his feedings really well. He is crying when hungry and then producing a lot of stools and urine...YAY urine!!! His oxygen levels in his blood have been very good so he has not needed any extra oxygen.
Prayers: The major issue right now is his creatinine levels in his kidney. They were 2.0 today, they need to be below 1.0 for the doctors to offer us heart surgery as an option. We are praying specifically for his numbers to drop before his little heart gives out!! Please pray for him to continue to tolerate his increase in feedings. He will be up to a normal amount of milk by tomorrow night when they will take out his last IV line. We are also praying for his heart to continue to sustain his little body. So many obstacles, but we serve a God who is able to do ALL things!! We also trust that He knows what is best for us and for Nehemiah, so as we pray and petition without ceasing, we also know that His will WILL be done and that He is good and merciful and wise. We will wait on Him.
"I would have despaired unless I had believed that I would see the goodness of the LORD

         In the land of the living.

Wait for the LORD;
         Be strong and let your heart take courage;
         Yes, wait for the LORD."- Ps.27:13-14

When Sorrows Like Sea Billows Roll...

So, we had the meeting with all the Dr.s today. There was a kidney specialist, two heart specialists and the NICU person in charge (not sure his title) along with our social worker. The kidney Dr. pretty much said that Nehemiah's one kidney that is functioning, is doing good for now, praise God!! But he thinks that sometime in his life, weather in a few months or years, he will almost definitely need dialysis and a kidney transplant. This would be ok news as his kidney is life sustaining for now and may be for years, but there is the heart. To have heart surgery Nehemiah would need a very good functioning kidney and the heart surgery would most likely take that kidney out. The Dr.s aren't taking heart surgery off the table yet. They are willing to continue to watch his kidney and see if the function gets better, as it usually does in infants in the first 6 weeks of life. But if it does not improve, they will take the option of heart surgery off the table as an option as his kidney isn't good enough to sustain heart surgery.If this happens, we will be left with the choice of what to do with Nehemiah's remaining time. Do we go home and wait and try and enjoy every min with our baby? Do we push for surgery anyway? We hope and pray that we do not have to make this decision. We are still hoping and praying fervently that the LORD would allow baby Nehemiah to live many years and that his kidney would be made strong. We know that all these things are in His hands though. We do not know how we will make it though these next few weeks or however long we will be in the intense heat of this trial, but we know that God is good and hears our cries and we have to cling to this!! Thank you all for your continued prayers for us and for our sweet blessing from the LORD.

When peace, like a river, attendeth my way,
When sorrows like sea billows roll;
Whatever my lot, Thou has taught me to say,
It is well, it is well, with my soul.

It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.

Though Satan should buffet, though trials should come,
Let this blest assurance control,
That Christ has regarded my helpless estate,
And hath shed His own blood for my soul.

My sin, oh, the bliss of this glorious thought!
My sin, not in part but the whole,
Is nailed to the cross, and I bear it no more,
Praise the Lord, praise the Lord, O my soul!

For me, be it Christ, be it Christ hence to live:
If Jordan above me shall roll,
No pang shall be mine, for in death as in life
Thou wilt whisper Thy peace to my soul.

But, Lord, ‘tis for Thee, for Thy coming we wait,
The sky, not the grave, is our goal;
Oh trump of the angel! Oh voice of the Lord!
Blessèd hope, blessèd rest of my soul!

And Lord, haste the day when my faith shall be sight,
The clouds be rolled back as a scroll;
The trump shall resound, and the Lord shall descend,
Even so, it is well with my soul

It is well, with my soul,
It is well, with my soul,
It is well, it is well, with my soul.