Monday, December 26, 2011

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!!

Friday, December 23, 2011

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.

Monday, December 19, 2011

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

Friday, December 16, 2011

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.

Wednesday, December 14, 2011

Nehemiah is here!!

It is so amazing seeing the goodness of the LORD! It is so amazing seeing and wondering in God's creation of a new life, a tiny human being created in the image of God for His glory!! Nehemiah is such a blessing. We are thankful for each moment we get with him and are constantly in prayer for our little guy. Thank you all for your prayers!! We intend to battle in prayer for this little life!! And we serve a God who is so good and merciful!
 So, the update on Nehemiah's health. He still has the same heart diagnosis of "truncus arteriosus" and will definitely need surgery. His one working kidney is hanging in there, praise to God!! but is not functioning very well. He is peeing frequently which is GREAT! but the Dr's are concerned about it's ability to filter. It's functioning is seeming to be going down too, which is not good! They have mentioned dialysis which is a last resort if his kidney can no longer function. If this happens, they will have to stabilize his kidney for at least a week before he can have heart surgery. We also found out today that his oxygen saturation level is high which means that they have to watch to make sure blood stays out of his lungs. This is part of his heart issue showing up and the Dr's seem to want to get him into surgery as soon as possible, but with the kidney's it's complicated. So much prayer is needed!! We know God is in control of this little one's life and we see Him answering prayer all around us!! Please pray for strength for us and for our little one. Comfort for our sweet Nehemiah as he has to undergo so much prodding and being separated from us. It is so hard even watching them do eye exams or what not, facing surgeries is another matter all together. As much as we wish we could spare this sweet boy from all that is ahead, we know and constantly petition for the LORD's comfort and hand to be upon him and that he would know the Presence of the Most High during these times. I love that our God became flesh and dwelt among us and showed us that He cares for the little ones, He draws them to Himself and blesses them. We pray His constant hand of blessing upon this little life He has created for His glory!! Thank you all for your prayers and support! We will wait upon the LORD!! 
"O magnify the LORD with me,
         And let us exalt His name together.
I sought the LORD, and He answered me,
         And delivered me from all my fears.
They looked to Him and were radiant,
         And their faces will never be ashamed.
This poor man cried, and the LORD heard him
         And saved him out of all his troubles.
The angel of the LORD encamps around those who fear Him,
         And rescues them.
O taste and see that the LORD is good;
         How blessed is the man who takes refuge in Him!
O fear the LORD, you His saints;
         For to those who fear Him there is no want"-Ps.34:3-9

Sunday, November 27, 2011

The Calm before the Storm

 I am 37 weeks this week! It is so incredible that the LORD has carried us and Nehemiah this far. He is 6lbs now, maybe a bit more, and his fluids are stable and his heart hasn't gotten any worse. Praise be to our God!! He is so faithful to give us the strength and grace one day at a time. We are headed down to Stanford on the 9th of December to, LORD willing, go into natural labor and get to meet this little guy!! We know the mountains up ahead are beyond us, but they aren't beyond our God, He is limitless. Wow. LIMITLESS!! There is nothing He cannot do, no obstacle He cannot overcome, no trial will take us beyond His reach and out of His grasp. As we approach getting to meet our little boy, I feel more of the ripping questions of why? Why us? Why something so hard? Yet, I also feel the LORD's steady hand guiding us and reminding me that He is in control and He will NOT forsake us!! So, we will walk ahead with our hand in His hands. Nehemiah will probably be in the NICU for the first couple days while they do lots of tests and then they will talk about when to do heart surgery. So crazy this is all happening in two to three weeks! We are excited to see the hand of our great and awesome God at work!! All glory from our lives be to HIM alone!

Thursday, November 3, 2011

I have nothing without Christ!

Take these hands and lift them up
For I have not the strength
To praise You near enough
For I have nothing
I have nothing without You

Take my voice and pour it out
And let it sing the songs of mercy
I have found
For I have nothing
I have nothing without You

And all my soul needs
Is all Your love to cover me
So all the world will see
That I have nothing without You

So take my body and build it up
May it be broken
As an offering of love
For I have nothing
I have nothing without You

And all my soul needs
Is all Your love to cover me
So all the world will see
That I have nothing
I love You

With all my heart
With all my soul
With all my mind
With all the strength that I can find

And all my soul needs
Is all Your love to cover me
So all the world can see
That I have nothing

Take my time here on this earth
And let it glorify all that You are worth
For I am nothing
I am nothing without You

-Bebo Norman

Thursday, October 20, 2011

Rejoice Always!

We had another appointment with the urologist this past week. It was basically the same news, his right kidney is multi-cystic and not working, the left is very swollen and not looking good, but it is still seeming to function. They have to wait until he's born to see if he will need surgery or not on that kidney. If it stops working before he is born, they will have to take him out early. They have me on a two week amniotic fluid check. It has been normal this far, praise the LORD! I have another check today and am praying it is still at a good level, but the LORD is in control.

  I was also reading in Hebrews and thinking about the discipline of God. We know from His word that He delights in blessing His children, but He also desires us to be holy as He is holy and uses the trials of this life to refine us and cause us to cling and to trust in Him. We would not know the depths of His love and compassion if we wen't poor and needy!

"For consider Him who has endured such hostility by sinners against Himself, so that you will not grow weary and lose heart. You have not yet resisted to the point of shedding blood in your striving against sin; and you have forgotten the exhortation which is addressed to you as sons,
It is for discipline that you endure; God deals with you as with sons; for what son is there whomhis father does not discipline? But if you are without discipline, of which all have become partakers, then you are illegitimate children and not sons. Furthermore, we had earthly fathers to discipline us, and we respected them; shall we not much rather be subject to the Father of spirits, and live? For they disciplined us for a short time as seemed best to them, but Hedisciplines us for our good, so that we may share His holiness. All discipline for the moment seems not to be joyful, but sorrowful; yet to those who have been trained by it, afterwards it yields the peaceful fruit of righteousness.
      Therefore, strengthen the hands that are weak and the knees that are feeble, and make straight paths for your feet, so that the limb which is lame may not be put out of joint, but rather be healed" Heb. 

  There is so much also in His word about rejoicing in hardship, rejoicing and giving thanks and praying continually.
"Rejoice always; pray without ceasing; in everything give thanks; for this is God’s will for you in Christ Jesus."- 1Thes. 5:16-18

"Rejoice in hope, be patient in tribulation, be constant in prayer." Romans 12:12

"Rejoice in the Lord always; again I will say, rejoice! Let your gentle spirit be known to all men. The Lord is near. Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus." Phil 4:4-7

 And I was thinking the LORD is bringing us through this hard trial and using it in our lives because He has accepted us as His own that we may share in His Holiness!! That is definitely cause for rejoicing!! He has accepted us as sons and daughters!! We may be assured of His good intentions for us because of Christ. And He is perfecting His work in us NOW! I know He will carry us and strengthen us. Life brings trials and hardship, but as we rejoice, pray and give thanks in all things we draw more and more near the One who loves us more than we can comprehend.

Thursday, October 13, 2011

It's hard to believe it's already October and Nehemiah is set to arrive in December! It feels like I have been pregnant for so long, yet only two months til his birth seems so quick. This has definitely been a faith walk and there is no end in sight. When we first found out about Nehemiah's kidneys I did a ton of research on-line, and then did the same when we found out about his heart issue. Now that we know he has a rare chromosome issue, Jacobson Syndrome, with additional chromosome information, where do I go? The Dr's are unsure about what this will mean. I can't google for the answers. I must go to the Creator who knows all things. It is amazing how He has hemmed us in. We cannot follow our natural instinct and try and take matters into our own hands, predict the outcome, prepare for what is up ahead. All we know is that Nehemiah is in His hands and He is good and He is in control. Then we must rest. Rest and wait upon Him continually. It is exciting knowing that He is at work yet it is hard to not focus on my weakness. I keep picturing over and over Peter walking on the waves to Jesus and as soon as he took his eyes off the Lord and saw the waves he started to sink, yet the Lord in His compassion and strength reaches out to catch him even in his weakness.

But seeing the wind, he became frightened, and beginning to sink, he cried out, "Lord, save me!"  Immediately Jesus stretched out His hand and took hold of him, and said to him, "You of little faith, why did you doubt?"-Matt 14:30

I know at the end of this trial, at the end of this life, we will look back and see God's faithfulness and loving kindness etched into every detail of our lives and we will say," LORD, why did I ever doubt You?!"

"Let the heart of those who seek the LORD be glad. Seek the LORD and His strength: Seek His face continually."-ps. 105:3-4

Saturday, September 3, 2011

Walking a long road...

"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

 We have found out that Nehemiah, our baby boy Due Dec. 16th., has a rare heart condition called truncus arteriosus . This in itself would be a huge hurtle, but we also found out that his kidneys are enlarged, one to the point of being too damaged to function and the other swollen, but still functioning to some point as there is plenty of amniotic fluid. If his one working kidney fails though, the Dr.s will not be able to operate on his heart and he will not survive. They also think he may have some chromosome abnormality because of small bones and cupped hands. We have not gotten testing done to see, and may soon, but are waiting to talk to our Dr. up here in Roseville. We've spent the past two days at Stanford getting ultrasounds and hearing bad news about his little body. Now it is waiting. Waiting for the next appointment. Waiting to see if his kidney will hold out. Waiting for weeks and months to go by so he will be able to grow! We have no guarantee of his life though- he may die before he is born. He may die shortly after he is born. All we have as a guarantee of is God's goodness and His promises!!
"Then Job arose and tore his robe and shaved his head, and he fell to the ground and worshiped. He said,
'Naked I came from my mother's womb and naked I shall return there. The LORD gave and the LORD has taken away. Blessed be the name of the LORD!' Through all this Job did not sin nor did he blame God." -Job 1:20-22
We are so thankful. We are thankful that God has put brothers and sister in Christ around us to lift us up in prayer. We are thankful for this trial, that God would choose to have us walk though this to bring us closer to Himself and to cause us to trust in Him alone! It is a battle though, to keep my eyes on Christ and my mind filled with his Word. It is hard to not think of "what ifs" and to be at peace no matter what the outcome. We want to hold Nehemiah, to know him, to see him grow! But we desire to see God more and we pray for His help and strength to rest in Him! It will be a long road these next couple months, but God has promised to be with us. We picked the name Nehemiah before we even knew I was expecting, and how amazing that it means "God Comforts". He is so faithful to comfort and strengthen His people. May He be glorified!!
"This is what the Sovereign LORD, the Holy One of Israel, says:
   “In repentance and rest is your salvation,
   in quietness and trust is your strength..."-Isaiah 30:15