At Your Cervix: Argumentative Paper - Resuscitation of 24 weekers

At Your Cervix: Argumentative Paper - Resuscitation of 24 weekers

I guess I knew that a lot of NICU staff felt this way, it is not the paper that bothered me so much but some of the comments made! I am glad I asked the doctors to save my baby. God is the giver of life, and if it is Gods will, he will take it away. I am so glad that GOD is in control and not these doctors and nurses!

Hi/Lo Thursday

This post is part of "Hi/Lo Thursday" on the a href="Riggs Family Blog. Check out http://www.riggsfamilyblog.com">their blog to read everyone else's "Hi/Lo" posts and get your link on their site.

My Highs
I am just so thankful for God for all of the blessings he has for his children and for his son Jesus Christ, I am also thankful for my children and that Elijah is doing so well in spite of everything he had going against him!

My Lows
I am still worried about our financial situation. I wish I did not worry so much about my children, I know I need to learn to trust in God to protect my children and let go of the worry I have.

...where laughter lives: The Riggs Family: A Pic, A Video & A Date!

...where laughter lives: The Riggs Family: A Pic, A Video & A Date!

David

I have always felt bad that I never put a picture of David on here. Since David was stillborn we only have one picture of him, I wish I had more but my surgery was so bad and my husband was so upset at that time. We didn't even have our camera with us, since we had no idea we were going to be in Florida for four months and that our babies would be born there. I hesitated to put this picture on here since it was taken after his death. But he was such a lovely little boy, perfect in every way. So I wanted to share him with you. It helps to imagine him and Lucas in heaven, perfect little children laughing and following Jesus. I know they suffered so much in their short time here, David was left in the birth canal for 4 days and he fought to live, I agonize over that sometimes. But, I wasn't myself due to the Mag and whatever else they had me on. The doctors did not want to deliver him because they said it would mean the death of my other boy's. But God is victorious, Praise God they will never hurt again. They were perfect and will remain that way, sin will never touch them.
I am thinking of them a lot lately, since we are fast coming up on their birth date. I thank God for Elijah and I know we will be with his brothers again someday!

I took Elijah to the doctor today. His home health nurse and early intervention seemed concerned about the shape of his head. At 24 weeks, when most babies are still floating around in the womb, Elijah was placed on his back for 24 hours a day. This was due to his chest tube and the ventilator. After coming off the vent he was placed on CPAP. This put constant pressure on the sides of his head. So his head has always been shaped funny and he has torticollis (tight muscles in the neck). We had hoped that his head shape would go back to normal, but it don't seem to be doing that. A baby's head is "moldable" until the sutures in the bones close. This happens around 18 months of age. So it is very important that we do something now or his head will always be shaped funny and this can cause him lots of problems later on. This means that Elijah will have to wear a DOC band on his head, think helmet.

He will wear it 23 hours a day until his head is reshaped. The bad thing about this is that the closest people who do this is in Charlotte, NC. It will mean weekly or biweekly trips each week, because the band has to be constantly adjusted. It is times like this that I hate the area I live in. We have had to travel so much this past year to see every specialist imaginable. It is going to be hard on us financially and we will probably have to rent a car each time because my old van is about to wear out, it is very close to going into the shop and I am very afraid of what they will say when it does! I will have to make these trips by myself because Brian won't be able t take off work, and each time he takes off sets us back. I know I need to continue to trust God that he will provide as he has done since the day Elijah was born. I get frustrated and worried sometimes but I don't want to let my faith in God waver. How can I when he has done so much for us. If not for God's power and grace Elijah would not be with us right now, and with a healed heart! It is by Gods grace that we are still in our home, and not even late on our payments, when Brian has took a HUGE paycut since being laid off at General Dyanamics and me unable to work. I know things will work out, and I thank God for all he has done for us, and all he will do!

If you want more information about the DOC Band go to www.cranialtech.com this actually affects full term babies as well, due to being on their backs alot! You can also see pictures of the bands on this web site.

Hi/Lo Thursday

This post is part of "Hi/Lo Thursday" on the Riggs Family Blog. Check out their blog to read everyone else's "Hi/Lo" posts and get your link on their site.

My High
We found out that God has healed Elijah's heart, the cardiologist said he has normal heart function now!

My Low
I guess that would be the worry about our finances and my husbands job. We also found out that Elijah will probably need a special helmet from cranial tech. The helmet will help reshape and repair some of the damage done to his head from his positioning in the NICU, the CPAP he was on for months, and his torticollis. If he needs this we will have to make weekly trips to North Carolina (6 hour round trip)for adjustments. Add this to the frequent trips we already make. This will be very difficult on us physically as well as financially!

Elijahs heart- There is hope because God heals!!

As most of you know Elijah was diagnosed with Cardiomyopathy while in the NICU in Tampa Florida. First they told me he had Hypertrophic Cardiomyopathy, then when we saw a cardiologist in Kingsport he diagnosed him with Dialated Cardiomyopathy which is even worse! According to the Cariomyopathy Foundation the long term prognosis for this disease is as follows:
"Currently, the five year survival rate for children diagnosed with hypertrophic cardiomyopathy is roughly 85-95%, and for children diagnosed with dilated cardiomyopathy, it is 40-50%. Children with restrictive cardiomyopathy have a 44-50% chance for 2 year survival following presentation"(http://www.childrenscardiomyopathy.org/site/prognosis.php).
I did not find out until today that they had changed his diagnosis to dilated cardiomyopathy, I found out when the new cardiologist was going over his records from my pediatricians office with me.
I know this all sounds bad but I have really great news, the cardiologist we saw today says that Elijah's heart is functioning normal. She said that the issue has apparantly resolved. He does have a small pocket of fluid around his heart which she said she was not worried about, she said it was probably caused by a virus. I know that God has healed Elijah, multiple tests were done in Tampa, and a additional one at home, his hands and feet would even turn blue. A NICU doctor had even mentioned the word "transplant" once when I asked about the long term implications.
God has done so much for Elijah, and he has brought him so far. There were so many times in the NICU that he was near death. When he had his first surgery I was told that he would not make it through the night, I prayed, and he did. When the doctors told me that he had a Grade IV bleed in his brain, I prayed, and with the next scan it was gone. I was told so many negative things while Elijah was in the hospital, but I just knew in my heart that God was going to heal him, and he did.
I want to thank everyone who has prayed for Elijah, please continue to keep Elijah and my family in your prayers! We are getting ready to leave Charlottesville right now, I will post some more pictures soon!