So sick, please pray.....

I am sick, my two year old is sick, my husband is sick and Elijah is coughing. I can't tell if it is just from reflux or if he is getting sick. He hasn't had a fever. Please if you read this say a prayer that he will not get sick. I know God's hand is on Elijah! Will post when I feel better!

Thank You,
Denise

Something to think about...

Do you ever think of how innocent little children are? Children haven't yet been corrupted by the things of the world. Think about it, children learn from what they see and what we teach them. A child loves everyone, a child does not judge people by what race they are or how they look. Then they learn these things from their parents, at school from other children (who also learned it from their parents), and on television. I believe we will be held accountable for what we teach our children,and for what we don't teach them. No we can't shut out everything but we can give them a strong base to draw from as they get older and start understanding right from wrong!
Have you ever thought about Matthew 18:3
Verily I say unto you, Except ye be converted, and become as little children, ye shall not enter into the kingdom of heaven.
Check out this video: Alex singing my redeemer lives, so precious!

My dream

I just wanted to post the dream I had the other morning. It was really a amazing dream. I dreamed that I was riding to church with my sister (who never goes to church with me). In my dream it was night. I was driving and it was a dark and a very strange thing happened. The moon just literally shot across the sky and was gone. I looked at my sister and said something is getting ready to happen, I can remember her grabbing her bible and opening it. Then I looked back up at the sky and there was a loud sound, like thunder but much louder and for one split second I felt a great fear, and then Jesus appeared in the sky, he was in the sky but it was like he was right there in front of me, and the fear was gone and I felt a great peace, like nothing I had been worried about mattered anymore. Then in a instant, before I even had time to take it in I was no longer driving the car, I was instantly somewhere else. I was in a large room with a few other people. The only person I recognized there was my mother. As I walked toward my mom Jesus appeared in the room. He looked just like a regular man but he was glowing and peace just radiated from him. He took my hand and spoke to me and he said "I have something to show you" he then led me to a door. We went through this door into another room which was empty. On the other side of this room was another door. He opened this door and led me into this room. I can remember this room was very cozy, it seems like there was a lady in there that I didn't recognize. In this room there were little cradles set up in a circle. We walked over to two of them and Jesus said "here are your children". I saw Lucas and David in these cribs, they were still tiny but they were alive and breathing. Then a strange thing happened, another baby in a crib next to Lucas raised it's head up (I think this baby was a girl) she was a little older than Lucas and David and had a head full of blond hair and she smiled at me. I thought "I wonder who this baby belongs to" I reached out and rubbed her head, then I woke up suddenly.
When I woke up it took a moment for me to figure out that I was at home in bed. Usually when I dream I have some kind of knowledge that this is only a dream. This dream was so real, I really thought Jesus had came back and I was in heaven with him and my babies. It was a beautiful dream and I just felt like sharing it with everyone!

Elijah update:
Elijah is doing well, he recently had a 6 month followup exam on his eyes. I had noticed his eyes crossing a little at times, but not all of the time so I wasn't sure if I was imagining it. Well turns out I wasn't, the doctor says he is having some intermittent crossing of his eyes. Right now we will just wait and see if it corrects itself. We go back in two months for a checkup and then if his eyes are still crossing we will discuss the options. I do know God can heal Elijah's eyes without him needing surgery, if it is his will!

Just a funny little thing Alex said:
You know you are spending to much time on the computer when your 2 year old looks at you one day and out of the clear blue says "mommy it's not your space it's my space!"

I hope everyone enjoys the pictures of the kids I posted on Wednesday. I had them done at Sears and was so pleased with them! I also have some coming from Olan Mills with just Alex and Elijah. I like them but the more I think about it the more Displeased I am with them. It bothers me that they only had Elijah in one pose the whole time. They were extremely overbooked and rushing us it was a nightmare.
When I filled the form out with the boy's names and ages on them of course I felt the need to explain that the reason Elijah was so small was because he was a micro preemie. I told the photographer he could only sit with support, so what does she do? She plops him on his side and in a basket, yes one pose for the whole session, never tries to sit him up. As you can see from the Sears session, he is sitting up in one of the pictures. I end up paying a fortune for a bunch of pictures I haven't even received in the mail yet (it's been three weeks). The more I think about it, the more I think I am going to request Elijah's pictures be retaken, what do you think?

Wordless Wednesday

I have seen another blogger do wordless Wednesday, on this day she does no blogging but just posts pictures. I think I am going to do that as well. I am going to try to update my blog more often, and this seems like a good way to do it! So today will be wordless Wednesday and I'll tell you all about Elijah's eye exam on Thursday! I know that I'm using words right now, I'll do it right next week!

Memories of the NICU and God's grace!

The nice weather we have been having lately makes me anxious for Spring! We'll get a couple of warm days though and then it gets cold! Alex is loving the warm weather and I was able to take Elijah out for some fresh air.

I am getting a little concerned about Elijah's development. I know it will take a while for him to catch up. After all he was four months early, he also went through two major surgeries, one of them when he was only a few days old. It is amazing that they can do surgery on such a tiny baby. His doctors are actually amazed at him and he has been called a "miracle" more than once! Last week he was weighed, his weight was 16 pounds exactly! It was by the Grace of God that he survived.

I remember the night of his surgery well because it was the night I went to the E.R. and found out I had blood clots in my lungs. I believe me and Elijah both came close to going home that night! I am so thankful that God saved us, I'm thankful he left me here for my children.

I was sitting in my hospital room, on supplemental oxygen when two NICU doctors came into my room. This happened often during those early weeks (yes I was in the hospital off and on for three months). Every time I saw those doctors coming I knew it was bad news, and every time they came I felt like they were teaming up on me. It usually started with them telling me how sick the babies were (I knew this). Then they would focus on everything that was wrong with the babies and how slim the chances were that they would have any quality of life. Well this particular time they were trying to convince me to discontinue care on Elijah, Lucas was actually doing well at that time, aside from having a Grade IV bleed in his brain.

Elijah was bleeding from his surgical site, his blood had been transfused so many times that all of the blood in his body had been replaced. They said he would not make it through the night. We should come down and see him one last time, we should think about taking him off the respirator and end his suffering. One of the doctors was crying and they almost had me convinced. But, something deep inside of me told me NO! I honestly believe it was the voice of God. I did go to the NICU that night. Instead of allowing the nurses to take Elijah off the respirator, instead of holding him as he breathed his last breath (as we would do with our Lucas a few weeks later), instead of doing these things I decided to reach into the isollette of that tiny, sick, pale, and lifeless baby. I put my hand over his stomach where the blood was soaking through the bandages, as donated blood dripped into his veins. I simply prayed, as so many friends and family were doing back home. I don't remember the words I said, but I do know that God healed that baby. I went back to my hospital room and my husband and Alex went back to the Ronald McDonald House. It is amazing how the fear left me, I knew that that tiny little body was in the hands of God. I knew that the will of God would be done no matter what and that I had made the right decision.

The next morning the phone didn't ring, I called down to the NICU to see how Elijah was doing. I was told that the bleeding had stopped during the night, and they didn't want to take the bloody gauze of yet in fear of restarting the bleeding. I knew that the bleeding would not start again, and even when they tore that gauze off it didn't.

After that I had peace about Elijah, not to say my faith wasn't tested time and again. Like when they told me a head scan had shown that Elijah had a grade four bleed, that was gone by the next scan. Then a few weeks later they decided they saw a cyst in his brain, he was sent for a MRI and guess what. There was no cyst.

As you know recently we were told that the Cardiomyopathy Elijah had been diagnosed with in the NICU and that was confirmed by another Cardiologist once we came home was no longer there. More prayers sent up by so many people, and a another touch from God.

I don't care what anyone says. I know my God lives and I know he loves us and that he still heals, if it is his will. I know he has a special plan for Elijah's life, and I know he wants Elijahs life to be a testimony of his Grace and his Glory!

I have been in God's presence so many times. He was there when he was healing my Elijah and he was there when Lucas left my arms and flew into his loving arms. So no matter what you are going through, please know that God is still there, you just have to seek his presence, he will never leave us.

My reply ....

Here is a copy of my reply to the article and comments mentioned in the last post. It is just the way I feel and comes from my heart. I hope I don't offend anyone, the majority of the nurses who cared for my boy's were wonderful! But, early on there were a few struggles and hurtful things said. The reply I wrote was mainly due to the fact that one of the commenters on the article said "My issue is that even if your baby is one of the 18% that survive and one of the even smaller numbers that have no sequela, parents have no idea what kind of torture they are signing their baby up for when they say do every thing. Nurses try to be as gentle as possible obviously but nearly every moment of these babies existance is taken up by painful disruptive treatments that keep them alive. It is cruel and in any other population it would not be tolerated."

Here is my response:
I am the mother of a surviving triplet who was born at 24 weeks. If I would have stopped care as the doctors suggested I would not have my happy little miracle baby who is almost a year old and doing great! As for the comments made about torture. There are children undergoing painful treatments for cancer every day and I don't hear anyone saying just to let them die! As far as NICU staff goes, most were wonderful. Then there were those who acted angry at having to save my baby. I had rude comments made to me by nurses about "people treating their animals better" and was put under a lot of pressure from Doctors, until I finally put my foot down. What I am trying to say is that NICU staff needs to treat families with respect no matter what they decide, after all it is not your child. Maybe if you put yourself in their shoes, what if it were your child in the NICU? Or what if it were your child facing months maybe even years of pain and cancer treatments? Would you still feel the same way? If you don't want to save babies then maybe you shouldn't be working in a NICU. One thing is obvious these tiny babies fight hard for their lives. I held one of my boy's as he died and watched him gasp for breath, he died fighting. I will never forget this as long as I live.
Please be kind and watch what you say, you never know who may be reading your words!

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!