I am so sorry it has been so long since I last posted. There is so much to share.
We are still on a long slow process of trying to get Nathan to eat. We increased the time off IV nutrition to 8 hours off, then 12 and now we are at 14 hours off nutrition (8 of it is off the pole). He eats better when he's off the pole, and when I feed him. On a good day he will eat 3 to 5 ounces total for the whole day. We were told we would get to come home on the 11th of November.
On Monday at lunch I started having a lot of pain. By Monday night, it was excrutiating and i was sure it was my gallbladder. I went to the ER, and was admitted to the Saint Louis University Hospital. I had an ultrasound Tuesday morning, and my gall bladder was inflamed and the stone was lodged in the neck of the gall bladder. I was so nauseous, it was overwhelming. I could not even keep down water. Monday night to noon on Wednesday when I had my surgery to remove my gallbladder, I was not allowed to eat or drink. I had lots of jello and chicken noodle soup that night, it has never tasted so good.
There is so much preparation for Nathan to come home (to my mom's house). We will be in Saint Louis for another 6 months for follow on treatments. I found out today that Nathan will now be coming home on the 10th of November. I am overwhelmed. The rule of not lifting over 10 pounds or bending over for six weeks . . . . it's quite frankly a joke. With a 3 year old and two days left to deep clean the house . . . no rest for mommies.
So I need to go clean . . . but a huge praise and a quick prayer request. The notification of the huge bill from the insurance company, they were billed for $293,000. We were waiting to find out how much we would owe, and we will only have to pay a little over $1,000. God is faithful, and we are so blessed. Please pray that God will work out the details for my job and that I will be able to work remotely. Please also pray for us to trust God with our finances, and for the Lord to continue to strengthen our marriage.
Thank you everyone for your prayers!
Our Journey of Nathan's Transplant
We're Still Rejoicing!
Thursday, October 27, 2011
Tuesday, October 11, 2011
Great is Thy Faithfulness: Answered Prayers
How can I do anything but rejoice. My heart is thankful. So many have stood with us in prayer for Nathan, more people than I will ever know. Our God is faithful, and he has answered so many prayers. Nathan's heart rate and respirations have gone back almost to normal.
It has been a major battle getting him to eat again. The mucositis , chemo and meds have given him a complete oral aversion. The results of the scope showed no abnormalities in his throat, stomach or small intestine. Praise God the biopsy results were also negative. Since all the tests came back normal, it really is all in his head that he doesn't want anything in his mouth. Eating is a painfully slow process requiring a lot of patience (again). I been doing positive touch to his face, getting him to suck on a pacifier and consistent feedings. He was off the IV pole for 4 hours a day. He eats better when the TPN is off, so starting yesterday it got increased to 6 hours a day.
He is such a different baby now that the feeding tube is out. He smiles so much, and most of the time is very happy. He is throwing up a lot less. We got to play on a special mat on the floor yesterday for the first time. There are so many things that I had taken for granted with Isaac. Being able to walk around the room with my baby, eating, sucking, and just playing on the floor are huge victories for us. This is a testimony to how faith god is, and how our prayers were answered.
For great is his love toward us, and the faithfulness of the LORD endures forever. Praise the LORD.
Psalm 117:2
Because of the LORD’s great love we are not consumed, for his compassions never fail.
The doctors are saying we may be able to go home in a month!
Every day is not easy, but I keep telling myself. . . the joy of the Lord is not conditional on our circumstances. God's goodness does not change due to our circumstances. Our father does not change, his faithfulness, his never ending grace, and unconditional love do not change.
I mess up a lot. Despite my sinfulness, he can still use me for his purpose. I am humbled. He uses others around me to minister to me, even people that don't have the same faith. He knows our hearts, our needs, our hurts and our joys. Our God is good. This is the day the Lord has made, let everything in me rejoice and praise his name.
It has been a major battle getting him to eat again. The mucositis , chemo and meds have given him a complete oral aversion. The results of the scope showed no abnormalities in his throat, stomach or small intestine. Praise God the biopsy results were also negative. Since all the tests came back normal, it really is all in his head that he doesn't want anything in his mouth. Eating is a painfully slow process requiring a lot of patience (again). I been doing positive touch to his face, getting him to suck on a pacifier and consistent feedings. He was off the IV pole for 4 hours a day. He eats better when the TPN is off, so starting yesterday it got increased to 6 hours a day.
He is such a different baby now that the feeding tube is out. He smiles so much, and most of the time is very happy. He is throwing up a lot less. We got to play on a special mat on the floor yesterday for the first time. There are so many things that I had taken for granted with Isaac. Being able to walk around the room with my baby, eating, sucking, and just playing on the floor are huge victories for us. This is a testimony to how faith god is, and how our prayers were answered.
For great is his love toward us, and the faithfulness of the LORD endures forever. Praise the LORD.
Psalm 117:2
They are new every morning; great is your faithfulness.
Lamentations 3:22-23
The doctors are saying we may be able to go home in a month!
Every day is not easy, but I keep telling myself. . . the joy of the Lord is not conditional on our circumstances. God's goodness does not change due to our circumstances. Our father does not change, his faithfulness, his never ending grace, and unconditional love do not change.
I mess up a lot. Despite my sinfulness, he can still use me for his purpose. I am humbled. He uses others around me to minister to me, even people that don't have the same faith. He knows our hearts, our needs, our hurts and our joys. Our God is good. This is the day the Lord has made, let everything in me rejoice and praise his name.
Monday, October 3, 2011
Progress
Nathans feeding tube was taken out at 9am this morning. He still has thrown up 4 or 5 times. He is not eating well, but did breastfeed once today for 7 minutes! His IV nutrition is only on for 20 hours per day. I asked if his 4 hour off time could be during the day. Then the nurse worked with the doctors to arrange that he is IV free for four hours a day so we are not attached to the pole! It was such a great feeling. I can not even describe how good it felt to be able to walk around with him. I just held him in my arms and spun around because I could. Thank you God for these victories!
He has so many sweet smiles. He has started to do little laughs, it is so neat to hear. He coos alot and is very attentive to people when they talk to him.
Please pray for Nathan to eat so we don't have to put the tube back in. Thank you so much for praying with us. I wish I could better relay how God has been answering our prayers. It has been a slow process requiring a lot of patience, but God is faithful.
He has so many sweet smiles. He has started to do little laughs, it is so neat to hear. He coos alot and is very attentive to people when they talk to him.
Please pray for Nathan to eat so we don't have to put the tube back in. Thank you so much for praying with us. I wish I could better relay how God has been answering our prayers. It has been a slow process requiring a lot of patience, but God is faithful.
Sunday, October 2, 2011
Tube be gone!
They are going to remove Nathan's feeding tube this morning in the case that it is the cause of Nathan gagging and throwing up. Please pray that he will eat on his own and not throw up so we do not have to put it in again. We should have the biopsy results on Tuesday or Wednesday. Please also pray that they come back clear.
Saturday, October 1, 2011
He Knows My Name
I promised to be real and transparent.
Real is that its hard. Why does God's faith building trials have to be so hard. I guess that means I don't learn very easy. I know he is my source . . . Its just a painful lesson right now. I always prayed that I would know what his will is beyond a shadow of a doubt. I wanted the neon sign. Be careful what you pray for. Right now, I know he is telling me and showing me that I need to depend on only him. But depending is hard. Sometimes I can't help but feel that God has taken so much from me.
. . .For unto whomsoever much is given, of him shall be much required: and to whom men have committed much, of him they will ask the more. Luke 12:48
I grieve for our family the way it was, I miss my little boy, and his sweet smile and laugh. I miss a comfortable bed, I long for a life without tubes, pumps and monitors. I want my boys to be together. I have a wonderful husband but sometimes I just want him with me so bad. Yet I am here in this hospital room. Sometimes I don't want to be strong anymore. I know I am blessed, but my heart still aches.
So here is the answer:
He knows my name, he knows your name. This is not just a song, but the promise we have in the Lord. He is our comforter. Here are the Lyrics . . . .
I have a Maker
He formed my heart
Before even time began
My life was in his hands
He knows my name
He knows my every thought
He sees each tear that falls
And He hears me when I call
[ Lyrics from: http://www.lyricsmode.com/lyrics/t/tommy_walker/he_knows_my_name.html ]
I have a Father
He calls me His own
He'll never leave me
No matter where I go
He knows my name
He knows my every thought
He sees each tear that falls
And He hears me when I call
http://www.youtube.com/watch?v=CC8puwexBBo
[ Praise to the God of All Comfort ] Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort.
2 Corinthians 1:3
You number and record my wanderings; put my tears into Your bottle--are they not in Your book? Then shall my enemies turn back in the day that I cry out; this I know, for God is for me.
Psalm 56:8-9
He will turn our sorrow into great joy. . . In 1 Peter it says how there will be trials for a little while but then great joy. I cling to the hope I have in the Lord, that the day of joy will come. Where we end, Christ begins.
Real is that its hard. Why does God's faith building trials have to be so hard. I guess that means I don't learn very easy. I know he is my source . . . Its just a painful lesson right now. I always prayed that I would know what his will is beyond a shadow of a doubt. I wanted the neon sign. Be careful what you pray for. Right now, I know he is telling me and showing me that I need to depend on only him. But depending is hard. Sometimes I can't help but feel that God has taken so much from me.
. . .For unto whomsoever much is given, of him shall be much required: and to whom men have committed much, of him they will ask the more. Luke 12:48
I grieve for our family the way it was, I miss my little boy, and his sweet smile and laugh. I miss a comfortable bed, I long for a life without tubes, pumps and monitors. I want my boys to be together. I have a wonderful husband but sometimes I just want him with me so bad. Yet I am here in this hospital room. Sometimes I don't want to be strong anymore. I know I am blessed, but my heart still aches.
So here is the answer:
He knows my name, he knows your name. This is not just a song, but the promise we have in the Lord. He is our comforter. Here are the Lyrics . . . .
I have a Maker
He formed my heart
Before even time began
My life was in his hands
He knows my name
He knows my every thought
He sees each tear that falls
And He hears me when I call
[ Lyrics from: http://www.lyricsmode.com/lyrics/t/tommy_walker/he_knows_my_name.html ]
I have a Father
He calls me His own
He'll never leave me
No matter where I go
He knows my name
He knows my every thought
He sees each tear that falls
And He hears me when I call
http://www.youtube.com/watch?v=CC8puwexBBo
[ Praise to the God of All Comfort ] Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort.
2 Corinthians 1:3
You number and record my wanderings; put my tears into Your bottle--are they not in Your book? Then shall my enemies turn back in the day that I cry out; this I know, for God is for me.
Psalm 56:8-9
He will turn our sorrow into great joy. . . In 1 Peter it says how there will be trials for a little while but then great joy. I cling to the hope I have in the Lord, that the day of joy will come. Where we end, Christ begins.
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