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