By now, most of you have probably heard that Riley went to be with the Lord on February 19. We are heartbroken that our baby boy is no longer here with us, but we have some peace knowing he is in heaven happy and healthy.
On the night of the 18th, we spent the night at our home so we could go to church the next day. When we awoke on the 19th, we called the Nicu to check on our son, as we always do. The doctor answered our call and once again told us Riley was having a bad morning. He said we ought to consider coming to the hospital earlier than we normally do. After hanging up, Craig and I pondered on if this was the devil trying to keep us from going to church or not. We decided to get ready for church and call before we went inside to check on Riley. Before we were able to leave our house, the doctor called Craig's phone and suggested we make our way to the hospital asap. Riley's heart rate was dropping steadily.
Even though Craig drove very fast, it seemed like it took forever to make it to the hospital. I was very nervous on the ride down there and grew even more nervous and scared as we got closer to the Nicu entrance.
Riley's spot is visible from the entrance door and I immediately looked to the right as I stepped in to see what was happening around him. His incubator was open and a few nurses and his doctor were standing around him. I could see his vitals were still being monitored so I knew he was still alive. When we reached his incubator, Craig and I each took one of his hands and told him that we were there. We told him that it was okay and if he needed to go, we would understand. We told him we loved him and we were proud of him.
A few minutes later, the doctor asked us if we wanted to hold him. I was scared and didn't know if I could do it. I looked at Craig and he said that I could and he would be right next to me. So, they switched Riley to a different ventilator so I could hold him. This also seemed like it took forever, the waiting was intense because I didn't know if he would still be alive when they put him in my arms.
I sat down in a chair next to his incubator with Craig right next to me. They put Riley in my arms and I burst into tears. It was the first time I got to hold my son. Craig said when they placed Riley in my arms all his vitals shot up for a few seconds before descending again. I was able to hold him for about 20 minutes before he passed away. We talked to him, kissed him, and soaked up every second we could with our son. After he passed, Craig held him for a few minutes. It was so precious to see Riley in his father's arms.
One of the nurses asked if we wanted to go in a family room and she would bring Riley in there so we could be alone with him. We decided to do this and went in the room to wait. Craig made phone calls to our parents, I could not say it out loud. The nurse brought Riley to us all swaddled in a blanket. I held him again for a short time as Craig had his arms around both of us. This was a special time because the three of us had not been alone ever. I felt like we were a family even though Riley was gone.
I'm not even sure if there are words to describe the feelings I felt that day and continue to feel. The pain is too great to call it pain, the emptiness is too vast too call it empty, and the sadness is so overwhelming. I miss my son every minute of every day. I will never get to take him to the beach or the zoo, I will never get to watch him take his first step or hear him laugh. These thoughts make my heart break.
I am thankful for the the time I was able to spend with him. Thankful I was able to see him open his eyes and hear him make his funny noises. Thankful I felt his hand squeeze mine. Thankful I changed his diaper, took his temperature, wiped his nose and mouth. I thank God he brought him into our lives even for a short time. I will love him forever and I will always be his mommy. He taught me so much in his almost 40 days. At his service, Thomas spoke of Riley inspiring many people through this blog and through word of mouth. He challenged all of us to continue to live like Riley did as we go on, bold and courageous. I will do my best to live this way in remembrance of my son.
If Riley's story has impacted you in any way and you would like to share it with Craig and I, we would love to hear from you. You can leave a comment here or email your story to kelmonteith@yahoo.com.
Going forward, I am thinking of writing a book about all of this. I'm not sure in what direction the book will go or how to even start. I may continue to blog as well, we'll just see what happens.
Finally, thank you to everyone who has been reading this blog and prayed for Riley and our family. We rely on God to give us strength to make it through each day. Even though we did not receive the answer we wanted to our prayers, God is still with us and will carry us through this unbelievably difficult time. We trust in God that he has great plans for us in the future. God bless all of you.
Wednesday, February 29, 2012
Thursday, February 16, 2012
Peace
We have been going through a lot the past few days. The doctors have been on the negative side and have talked to us a few times about how we need to be "prepared" because they think he's headed down the wrong path. I have cried next to his incubator almost non-stop Sunday - Wednesday. Craig and I were in such turmoil and pain.
I finally realized that I have to be at peace with whatever God's will is for Riley. I want more than anything for God to heal Riley and continue to pray for this. I want to take him home, watch him take his first step, hear his first word, and so much more. In order for me to survive this and not go absolutely crazy, I have to give this totally up to God. I have to know that no matter what happens, God is in control. Craig also realized this last night. This is by no means an easy place to go mentally and emotionally, but it is necessary. I read in 1 Peter the other day something that has helped me a lot, 3 May the God and Father of our Lord Jesus Christ be blessed! On account of his vast mercy, he has given us new birth. You have been born anew into a living hope through the resurrection of Jesus Christ from the dead. 4 You have a pure and enduring inheritance that cannot perish—an inheritance that is presently kept safe in heaven for you. 5 Through his faithfulness, you are guarded by God’s power so that you can receive the salvation he is ready to reveal in the last time. 6 You now rejoice in this hope, even if it’s necessary for you to be distressed for a short time by various trials. 7 This is necessary so that your faith may be found genuine. (Your faith is more valuable than gold, which will be destroyed even though it is itself tested by fire.) Your genuine faith will result in praise, glory, and honor for you when Jesus Christ is revealed. (1 Peter 1:3-7, CEB) To me, this means that through every trial that we face here on earth, if we are truly saved, then we should be at peace knowing that we will spend eternity in heaven. In heaven, there will be no pain, no death, no turmoil. I am going through the most painful time in my life, yet I can still find peace and joy in knowing that I will be with God one day.
Since Craig and I have "let go and let God", today we feel much better. Riley had a good day actually and we are rejoicing and praising God for that! I have also realized that I am focusing too much on the numbers, meaning his vital signs, blood gas numbers, etc. I have just tried to focus on the fact that Riley is alive, moving, and making noises. It's VERY hard not to stare at his vitals monitor and look at the other numbers that surround Riley constantly. I now turn the screen away when I'm sitting next to him so I don't look at the numbers. That being said, I'm not going to write every detail about his progress right now. Just know that he had a good day, his numbers were better and his urine was really good.
We are by no means giving up, we still have faith that God will heal Riley and answer all of our prayers. He is answering our prayers! On Wednesday, Riley had been really still most of the day, I prayed that night that he would move and he did almost immediately. Riley also was not urinating that well and Craig prayed for Riley's kidneys to open up and they did. We knew this because we could see more blue on his diaper, pampers now show there is urine in the diaper when the yellow line changes to blue. Where there once was a small blue dot before Craig prayed, there was now a line. We praise God for answering those and other prayers so quickly.
My prayer now is that God's will be done. God knows the desires of my heart, he knows that I want my baby to be healed. I have faith that Riley's healing is God's will, Riley is such a precious little baby who has so much to live for and experience.
Your prayers are greatly appreciated and we thank you!
I finally realized that I have to be at peace with whatever God's will is for Riley. I want more than anything for God to heal Riley and continue to pray for this. I want to take him home, watch him take his first step, hear his first word, and so much more. In order for me to survive this and not go absolutely crazy, I have to give this totally up to God. I have to know that no matter what happens, God is in control. Craig also realized this last night. This is by no means an easy place to go mentally and emotionally, but it is necessary. I read in 1 Peter the other day something that has helped me a lot, 3 May the God and Father of our Lord Jesus Christ be blessed! On account of his vast mercy, he has given us new birth. You have been born anew into a living hope through the resurrection of Jesus Christ from the dead. 4 You have a pure and enduring inheritance that cannot perish—an inheritance that is presently kept safe in heaven for you. 5 Through his faithfulness, you are guarded by God’s power so that you can receive the salvation he is ready to reveal in the last time. 6 You now rejoice in this hope, even if it’s necessary for you to be distressed for a short time by various trials. 7 This is necessary so that your faith may be found genuine. (Your faith is more valuable than gold, which will be destroyed even though it is itself tested by fire.) Your genuine faith will result in praise, glory, and honor for you when Jesus Christ is revealed. (1 Peter 1:3-7, CEB) To me, this means that through every trial that we face here on earth, if we are truly saved, then we should be at peace knowing that we will spend eternity in heaven. In heaven, there will be no pain, no death, no turmoil. I am going through the most painful time in my life, yet I can still find peace and joy in knowing that I will be with God one day.
Since Craig and I have "let go and let God", today we feel much better. Riley had a good day actually and we are rejoicing and praising God for that! I have also realized that I am focusing too much on the numbers, meaning his vital signs, blood gas numbers, etc. I have just tried to focus on the fact that Riley is alive, moving, and making noises. It's VERY hard not to stare at his vitals monitor and look at the other numbers that surround Riley constantly. I now turn the screen away when I'm sitting next to him so I don't look at the numbers. That being said, I'm not going to write every detail about his progress right now. Just know that he had a good day, his numbers were better and his urine was really good.
We are by no means giving up, we still have faith that God will heal Riley and answer all of our prayers. He is answering our prayers! On Wednesday, Riley had been really still most of the day, I prayed that night that he would move and he did almost immediately. Riley also was not urinating that well and Craig prayed for Riley's kidneys to open up and they did. We knew this because we could see more blue on his diaper, pampers now show there is urine in the diaper when the yellow line changes to blue. Where there once was a small blue dot before Craig prayed, there was now a line. We praise God for answering those and other prayers so quickly.
My prayer now is that God's will be done. God knows the desires of my heart, he knows that I want my baby to be healed. I have faith that Riley's healing is God's will, Riley is such a precious little baby who has so much to live for and experience.
Your prayers are greatly appreciated and we thank you!
Tuesday, February 14, 2012
Love
In the spirit of Valentine's Day, I am going to write about love. You experience many different kinds of love throughout your life. We use the word love a lot to describe how we feel about things. I love that food, I love that store, I love that movie. Maybe we are using it too much and trivialising the true meaning of love. I just looked up the definition of love on the web dictionary and there are so many various definitions. The bible mentions love many times. So now you are expecting me to attach 1 Corinthians 13 so you can read, Love is patient, love is kind, etc. I will attach this verse instead "For God so loved the world, that He gave His only begotten Son, that whoever believes in Him should not perish, but have eternal life." (John 3:16)
This is the example of true love. God loves us so much that he sent his son Jesus to save us from ourselves and satan. Even though we are sinners and do not live as God intended, he saved us anyway. This is love. Unconditional, pure, never failing love. This is how God wants us to love each other, but so often do not. Love is an action, a choice. It's loving someone even when they hurt you or let you down. In Matthew, Jesus talks about love in the commandments: 34 When the Pharisees heard that Jesus had left the Sadducees speechless, they met together. 35 One of them, a legal expert, tested him. 36 “Teacher, what is the greatest commandment in the Law?” 37 He replied, “You must love the Lord your God with all your heart, with all your being,[c] and with all your mind. 38 This is the first and greatest commandment. 39 And the second is like it: You must love your neighbor as you love yourself.[d] 40 All the Law and the Prophets depend on these two commands.” (Matthew 22:34-40, CEB)
I believe I have found true love with Craig. I love him unconditionally, I may get annoyed with him at times, but the love never goes away. I make the choice to love him even if he gets on my nerves or doesn't act they way I think he should. Love is looking past all those things. I love Riley the same, I love him so much it is indescribable. I would do anything for Riley and Craig. I hope that you have love in your life. Even if you do not have someone here on earth you truly love or that truly loves you, you do have a heavenly father who loves you more than anyone here on earth can. Turn to him, he will show you love. God is love after all.
Riley is still fighting and being a strong boy. He had some ups and downs today. The doctor says Riley's labs are doing better nutrition wise so the doctor is going to try some new formulas to add amino acids and other things Riley needs. Riley's diapers have been good the whole day. He had some trouble tonight with his gases, the nurses adjusted his vent tube to help with that.
We have asked our family and friends and I will ask you now to please pray for Riley to receive and accept breast milk soon. This has been weighing on my heart the past few days, I feel like they need to try to feed him again. Riley did really well with breast milk the very first time and was receiving it until the infection a couple weeks ago. Please pray that when they do try again, Riley will accept the nourishment and that his body will grow stronger.
Happy Valentine's Day
This is the example of true love. God loves us so much that he sent his son Jesus to save us from ourselves and satan. Even though we are sinners and do not live as God intended, he saved us anyway. This is love. Unconditional, pure, never failing love. This is how God wants us to love each other, but so often do not. Love is an action, a choice. It's loving someone even when they hurt you or let you down. In Matthew, Jesus talks about love in the commandments: 34 When the Pharisees heard that Jesus had left the Sadducees speechless, they met together. 35 One of them, a legal expert, tested him. 36 “Teacher, what is the greatest commandment in the Law?” 37 He replied, “You must love the Lord your God with all your heart, with all your being,[c] and with all your mind. 38 This is the first and greatest commandment. 39 And the second is like it: You must love your neighbor as you love yourself.[d] 40 All the Law and the Prophets depend on these two commands.” (Matthew 22:34-40, CEB)
I believe I have found true love with Craig. I love him unconditionally, I may get annoyed with him at times, but the love never goes away. I make the choice to love him even if he gets on my nerves or doesn't act they way I think he should. Love is looking past all those things. I love Riley the same, I love him so much it is indescribable. I would do anything for Riley and Craig. I hope that you have love in your life. Even if you do not have someone here on earth you truly love or that truly loves you, you do have a heavenly father who loves you more than anyone here on earth can. Turn to him, he will show you love. God is love after all.
Riley is still fighting and being a strong boy. He had some ups and downs today. The doctor says Riley's labs are doing better nutrition wise so the doctor is going to try some new formulas to add amino acids and other things Riley needs. Riley's diapers have been good the whole day. He had some trouble tonight with his gases, the nurses adjusted his vent tube to help with that.
We have asked our family and friends and I will ask you now to please pray for Riley to receive and accept breast milk soon. This has been weighing on my heart the past few days, I feel like they need to try to feed him again. Riley did really well with breast milk the very first time and was receiving it until the infection a couple weeks ago. Please pray that when they do try again, Riley will accept the nourishment and that his body will grow stronger.
Happy Valentine's Day
Monday, February 13, 2012
Anything is possible with God on your side
There are many stories in the bible where we learn anything is possible with God. Peter walking on the water, David defeating Goliath, Daniel surviving the lion's den, etc. I've been thinking about these stories a lot lately. I say to myself that just like Peter walked on the water, Riley will be healed. Even though Riley's condition is critical and he's a very sick little baby, God can heal him. I also think that this is Riley's Goliath moment and ours too. We must have faith on the good days and bad that God will take care of Riley and he will come home with us one day.
Friday and Saturday were good days for Riley, especially Saturday. Saturday they lowered settings on a few medicines and his oscillator, things were going well. Yesterday, however, he had a set back. The doctors believe he might have a new infection so they took some blood cultures yesterday. It will take a couple days for us to get the results. Riley started to "desat", meaning his vitals were dropping, they uped his oxygen and raised his oscillator settings. He did not respond well to the changes for awhile, but his last couple blood gases were good. His urine output decreased again as well.
It's difficult for Riley to recover and get well for several reasons, which are all intertwined. I was going to list all of the reasons but I don't want to put it out there like I'm accepting it. Just please pray for all of his bodily functions to work together as God designed. We appreciate you so much for praying. It's very difficult to watch your child fight for his life everyday. I can't even describe in words how painful it is at times. I just do my best to pray when I'm feeling down and repeat scriptures over and over again. We are not going to let Satan enter our hearts or minds. We must fight back with the word of God and our faith. My friend, Celest, said it best...she said we are high priority for Satan right now. I have never felt so attacked in my life and he's messing with my child which is so not cool. We are standing firm in our faith that God has defeated Satan and is healing Riley.
Friday and Saturday were good days for Riley, especially Saturday. Saturday they lowered settings on a few medicines and his oscillator, things were going well. Yesterday, however, he had a set back. The doctors believe he might have a new infection so they took some blood cultures yesterday. It will take a couple days for us to get the results. Riley started to "desat", meaning his vitals were dropping, they uped his oxygen and raised his oscillator settings. He did not respond well to the changes for awhile, but his last couple blood gases were good. His urine output decreased again as well.
It's difficult for Riley to recover and get well for several reasons, which are all intertwined. I was going to list all of the reasons but I don't want to put it out there like I'm accepting it. Just please pray for all of his bodily functions to work together as God designed. We appreciate you so much for praying. It's very difficult to watch your child fight for his life everyday. I can't even describe in words how painful it is at times. I just do my best to pray when I'm feeling down and repeat scriptures over and over again. We are not going to let Satan enter our hearts or minds. We must fight back with the word of God and our faith. My friend, Celest, said it best...she said we are high priority for Satan right now. I have never felt so attacked in my life and he's messing with my child which is so not cool. We are standing firm in our faith that God has defeated Satan and is healing Riley.
"37 Nothing is impossible for God.” (Luke 1:37, CEB)
26 Jesus looked at them carefully and said, “It’s impossible for human beings. But all things are possible for God.” (Matthew 19:26, CEB)
23 Jesus said to him, “‘If you can do anything’? All things are possible for the one who has faith.” (Mark 9:23, CEB)
Thursday, February 9, 2012
Lord give me Strength
I have been calling on God today to give Craig, Riley and myself strength. Some days are more difficult than others and today was a hard day for me. Not because anything terrible happened but because he his still so swollen. Everyday I walk into the NICU hoping I'll see some sign of the swelling going down, maybe that day will come tomorrow. I've been trying to figure out a way to describe what he looks like. The best way I can describe him is he looks like a Thanksgiving day parade balloon, all puffed up and shiny. His body looks like it has been stretched to the max and filled with fluid. It is heartbreaking to see him this way. I just wish I could pick him up, hold him in my arms, and kiss him till he feels better. He's such a precious little baby.
The day doctor tried to lower his oscillator settings some more today, but Riley did not respond well to the changes so that was a no go. His blood pressure also dropped again which decreased his urine output. They gave him some fluids to help increase his blood pressure which it did, it was in the high 30s, low 40s when we left him tonight. Hopefully, his urine output will increase overnight as well.
This is such a vicious cycle that is very stressful and draining. I just have to remember that God is in control and there will be a silver lining after the storm passes. I've had other difficult times in my life before where I've felt defeated, devastated, and thought the pain would never go away. God helped me through that tough time as well and when the clouds parted, Craig was there. He has been such a gift and blessing, I can only imagine what great blessings God has in store for us after this hurricane. This is definitely the most difficult time in my life. I am so lucky to have Craig as my partner, he knows exactly how to comfort me or exactly the right words to say to make me feel better. Riley is very lucky to have such a wonderful father.
I am also blessed with some wonderful friends and family. I text some of my friends today just letting them know how I'm feeling and they all text back with great words of encouragement and advice. My friend, Natalie, sent a scripture. "You are the God who works wonders; you have demonstrated your strength among all peoples." (Psalms 77:14, CEB) I repeated this to myself many times and this helped me because I know God will work wonders in Riley and he will be a testimony to God's infinite strength and love.
Please pray for Riley's extra fluid to leave his body and for his body to function properly. He is our sweet baby boy and we love him dearly.
The day doctor tried to lower his oscillator settings some more today, but Riley did not respond well to the changes so that was a no go. His blood pressure also dropped again which decreased his urine output. They gave him some fluids to help increase his blood pressure which it did, it was in the high 30s, low 40s when we left him tonight. Hopefully, his urine output will increase overnight as well.
This is such a vicious cycle that is very stressful and draining. I just have to remember that God is in control and there will be a silver lining after the storm passes. I've had other difficult times in my life before where I've felt defeated, devastated, and thought the pain would never go away. God helped me through that tough time as well and when the clouds parted, Craig was there. He has been such a gift and blessing, I can only imagine what great blessings God has in store for us after this hurricane. This is definitely the most difficult time in my life. I am so lucky to have Craig as my partner, he knows exactly how to comfort me or exactly the right words to say to make me feel better. Riley is very lucky to have such a wonderful father.
I am also blessed with some wonderful friends and family. I text some of my friends today just letting them know how I'm feeling and they all text back with great words of encouragement and advice. My friend, Natalie, sent a scripture. "You are the God who works wonders; you have demonstrated your strength among all peoples." (Psalms 77:14, CEB) I repeated this to myself many times and this helped me because I know God will work wonders in Riley and he will be a testimony to God's infinite strength and love.
Please pray for Riley's extra fluid to leave his body and for his body to function properly. He is our sweet baby boy and we love him dearly.
Wednesday, February 8, 2012
Protection
The past few days have been good for Riley. He has maintained acceptable urine output and blood pressure levels. The docs have made a few minor changes on his oscillator settings, other than that no changes have been made to his care. He is still really swollen, that is what our prayers have been focused on recently. I pray that he will either pee out the fluid or absorb it back into his body. He has done this before, we just need to keep praying and believing that he can do this again.
When I am away from Riley, I picture Jesus standing next to his incubator with his hands on Riley. I have a picture of Jesus in my head I guess from the movies. I picture a man with shoulder length brown hair and a beard wearing a long colorful robe over a white tunic (I guess tunic is the right word, not sure). Anyway, this comforts me and I feel like Riley is protected while Craig and I are not there.
Speaking of protection, have you ever heard of the armor of God? When I was little, my Dad bought me and my brothers the armor of God. Turns out, Craig had the armor of God as a child too. The armor came complete with the breast plate of righteousness, the helmet of salvation, the shield of faith, the belt of truth, the sword of the Spirit, and the shoes of peace. It also came with a video I think...but that's not mentioned in the bible. A few days ago, I came across the scriptures where the armor is mentioned and I immedieatley imagined Riley wearing the armor of God. He needs all the protection he can get! Of course, I am imagining Riley wearing the kid plastic version my brothers and I had, but that's ok. He's our little soldier fighting for his life wearing the armor of God. We are so very proud of him.
Here are the scriptures I found that mention the armor, it's Ephesians 6:12-17, NIV
When I am away from Riley, I picture Jesus standing next to his incubator with his hands on Riley. I have a picture of Jesus in my head I guess from the movies. I picture a man with shoulder length brown hair and a beard wearing a long colorful robe over a white tunic (I guess tunic is the right word, not sure). Anyway, this comforts me and I feel like Riley is protected while Craig and I are not there.
Speaking of protection, have you ever heard of the armor of God? When I was little, my Dad bought me and my brothers the armor of God. Turns out, Craig had the armor of God as a child too. The armor came complete with the breast plate of righteousness, the helmet of salvation, the shield of faith, the belt of truth, the sword of the Spirit, and the shoes of peace. It also came with a video I think...but that's not mentioned in the bible. A few days ago, I came across the scriptures where the armor is mentioned and I immedieatley imagined Riley wearing the armor of God. He needs all the protection he can get! Of course, I am imagining Riley wearing the kid plastic version my brothers and I had, but that's ok. He's our little soldier fighting for his life wearing the armor of God. We are so very proud of him.
Here are the scriptures I found that mention the armor, it's Ephesians 6:12-17, NIV
12 For our struggle is not against flesh and blood, but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. 13 Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. 14 Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, 15 and with your feet fitted with the readiness that comes from the gospel of peace. 16 In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. 17 Take the helmet of salvation and the sword of the Spirit, which is the word of God.
I may no longer have the physical "armor of God", but I do have a close relationship with God and the ability to wear the armor proudly.
Monday, February 6, 2012
"I will worship while I'm waiting"
These are lyrics from a song that frequently plays on KSBJ, which is pretty much the only station we listen to now. It sums up what I've been feeling the past few days. I believe that Riley is healed and I will continue to pray and praise God while I'm waiting for Riley's healing to be revealed physically. My Aunt Tess sent me a verse recently that speaks to this:
14 Wait patiently for the LORD.
Be brave and courageous.
Yes, wait patiently for the LORD.
Psalms 27:14, NLT
As I have said before, I know God is trying to teach Craig and I many things through this and one of those things is patience. Babies in the NICU are very special and their treatment plan is as well. It's not as simple as when we go to the doctor and they say you have strep throat, here's your meds and you'll feel better in a few days. Riley's body is adjusting to life on the outside and he will need time to develop and may encounter many hurdles along the way. This is why we all need patience right now. We just need to trust God that he is taking care of it all and Riley will come home with us one day.
I have been visualizing Riley riding home in his car seat and being carried into our home by Craig. These visualizations are helpful and give me peace and hope. I recently read in Genesis 13 about Abraham visualizing God's promises to him that he would lead many people. God tells Abraham to look and foresee what will happen, that is what we are doing as well. I know many members of our family are doing the same thing.
The rollercoaster took some twists and turns again this weekend. Riley was having difficulty urinating for a couple days and he swelled up a lot over the weekend. It is so hard to see him like this because he had gotten so tiny and he was looking so good. Thankfully, his urine output has picked up and has been pretty steady the past 36 hours or so. His blood pressure also dropped a little, but they have him on dopamine and are giving him blood or other meds as needed to help keep that number between 35-45.
Yesterday was difficult because they put him on his side to help alleviate what they thought was a hyperinflated right lung. He did NOT like that at all, his vitals were not good while he was on his side. Eventually, they layed him on his back again and his vitals came back up. After a couple more chest x-rays, they decided the best thing was to reinsert the chest tube. Since then, his blood gases and vitals have been better. They have been able to lower his settings on his oscillator (ventilator) today and he's on a low oxygen level. We pray that he will continue to have good days and that his swelling will go down. I know he cannot be comfortable, even though they are giving him morphine.
We thank each of you for your constant prayers. This is the best thing anyone can do for Riley right now. God is listening.
14 Wait patiently for the LORD.
Be brave and courageous.
Yes, wait patiently for the LORD.
Psalms 27:14, NLT
As I have said before, I know God is trying to teach Craig and I many things through this and one of those things is patience. Babies in the NICU are very special and their treatment plan is as well. It's not as simple as when we go to the doctor and they say you have strep throat, here's your meds and you'll feel better in a few days. Riley's body is adjusting to life on the outside and he will need time to develop and may encounter many hurdles along the way. This is why we all need patience right now. We just need to trust God that he is taking care of it all and Riley will come home with us one day.
I have been visualizing Riley riding home in his car seat and being carried into our home by Craig. These visualizations are helpful and give me peace and hope. I recently read in Genesis 13 about Abraham visualizing God's promises to him that he would lead many people. God tells Abraham to look and foresee what will happen, that is what we are doing as well. I know many members of our family are doing the same thing.
The rollercoaster took some twists and turns again this weekend. Riley was having difficulty urinating for a couple days and he swelled up a lot over the weekend. It is so hard to see him like this because he had gotten so tiny and he was looking so good. Thankfully, his urine output has picked up and has been pretty steady the past 36 hours or so. His blood pressure also dropped a little, but they have him on dopamine and are giving him blood or other meds as needed to help keep that number between 35-45.
Yesterday was difficult because they put him on his side to help alleviate what they thought was a hyperinflated right lung. He did NOT like that at all, his vitals were not good while he was on his side. Eventually, they layed him on his back again and his vitals came back up. After a couple more chest x-rays, they decided the best thing was to reinsert the chest tube. Since then, his blood gases and vitals have been better. They have been able to lower his settings on his oscillator (ventilator) today and he's on a low oxygen level. We pray that he will continue to have good days and that his swelling will go down. I know he cannot be comfortable, even though they are giving him morphine.
We thank each of you for your constant prayers. This is the best thing anyone can do for Riley right now. God is listening.
Friday, February 3, 2012
Confirmed Causes
We now have confirmation as to what caused Riley and I to get so sick. Apparently, I contracted parvovirus (separate from the parvo dogs can get) and then passed it along to my son. The virus then caused the hydrops to develop. This only answers the question of why the hydrops occured it does not change the treatment plan. The doctors still have to treat him one day at a time.
I have never heard of parvo (also called fifths disease) in humans before and had no idea to look for symptoms. The symptoms are that of a common cold, which I had a couple weeks prior to Riley's birth. Furthermore, one website claims that less than 5% of pregnant women who contract parvo and pass it along to their baby will result in the baby developing hydrops. No one told me during my pregnancy to look out for parvo, probably because it is so rare for this to happen. I think that pregnant women should at least be told of this disease and the complications it may cause. I am really trying not to do the coulda, woulda, shouldas now that I know all this. Again, God has a plan and this all happened for a reason.
We also found out that Riley has a bacterial infection which caused the crash last Saturday and the doctors have prescribed antibiotics accordingly. He will be given these for 10 days to treat the infection. We pray that the antibiotics work well and that he will overcome this infection too.
Riley also needs prayers for his urine output, it slacked off again yesterday (Feb. 2) and he really needs to start giving good diapers again. The nurse said early this morning that he is improving but it is still low.
Good news is they took the chest tube out yesterday. We pray that the pneumo does not return and will not need a chest tube again!
Riley is such a strong little boy and we are so proud of him for fighting for his life. I love him so much. I look forward to the day when I can hold my little boy and feel his warm body against mine. He's so precious and special.
We know God is listening so please continue to pray for increase in blood pressure, urine and healing of the infection specifically.
I have never heard of parvo (also called fifths disease) in humans before and had no idea to look for symptoms. The symptoms are that of a common cold, which I had a couple weeks prior to Riley's birth. Furthermore, one website claims that less than 5% of pregnant women who contract parvo and pass it along to their baby will result in the baby developing hydrops. No one told me during my pregnancy to look out for parvo, probably because it is so rare for this to happen. I think that pregnant women should at least be told of this disease and the complications it may cause. I am really trying not to do the coulda, woulda, shouldas now that I know all this. Again, God has a plan and this all happened for a reason.
We also found out that Riley has a bacterial infection which caused the crash last Saturday and the doctors have prescribed antibiotics accordingly. He will be given these for 10 days to treat the infection. We pray that the antibiotics work well and that he will overcome this infection too.
Riley also needs prayers for his urine output, it slacked off again yesterday (Feb. 2) and he really needs to start giving good diapers again. The nurse said early this morning that he is improving but it is still low.
Good news is they took the chest tube out yesterday. We pray that the pneumo does not return and will not need a chest tube again!
Riley is such a strong little boy and we are so proud of him for fighting for his life. I love him so much. I look forward to the day when I can hold my little boy and feel his warm body against mine. He's so precious and special.
We know God is listening so please continue to pray for increase in blood pressure, urine and healing of the infection specifically.
Thursday, February 2, 2012
Peace and Healing
Riley is continuing to do well, his blood gases are coming back with good numbers so they are continuing to lower his oxygen and some settings on the oscillator. The chest pump was turned to water seal yesterday about this time and his xrays are still showing no signs of a return of the pneumothorax so that's great. We pray that the pneumo will not return and they can remove his chest tube when he's ready. We constantly pray that God will guide his doctors and nurses so they can make the right decisions for his care.
Over the past week it's really starting to set in that Craig and I did not get to experience Riley's birth. I was under general anesthesia so Craig was not allowed in the room. I always imagined being in a delivery room with Craig holding my hand and the doctor telling me to push then hearing my son cry for the first time. Basically, what you see on tv. This is hard to let go. To be honest, I feel cheated out of the experience. I have been praying a lot for God to take these negative feelings from me and give me peace about the situation. I also think that this is a cause for my milk not coming in as quickly as others. I don't have the memory of giving birth so it's like my body knows the baby is outside of me now, but my mind can't catch up with this idea. When I was in ICU, I remember thinking...I'm not pregnant anymore and I have no idea where my baby is or what he looks like. This was really difficult to fathom. I will just keep praying for God to give me peace and understanding.
My Aunt Jennifer sent this pic and verse in an email and I am going to share it with you. I gives me comfort to know God is protecting us always and we can reach out to him in the midst of our troubled times for protection. He definitely is covering Riley with his wings.
Over the past week it's really starting to set in that Craig and I did not get to experience Riley's birth. I was under general anesthesia so Craig was not allowed in the room. I always imagined being in a delivery room with Craig holding my hand and the doctor telling me to push then hearing my son cry for the first time. Basically, what you see on tv. This is hard to let go. To be honest, I feel cheated out of the experience. I have been praying a lot for God to take these negative feelings from me and give me peace about the situation. I also think that this is a cause for my milk not coming in as quickly as others. I don't have the memory of giving birth so it's like my body knows the baby is outside of me now, but my mind can't catch up with this idea. When I was in ICU, I remember thinking...I'm not pregnant anymore and I have no idea where my baby is or what he looks like. This was really difficult to fathom. I will just keep praying for God to give me peace and understanding.
My Aunt Jennifer sent this pic and verse in an email and I am going to share it with you. I gives me comfort to know God is protecting us always and we can reach out to him in the midst of our troubled times for protection. He definitely is covering Riley with his wings.
Reminds me of Psalm 91:4, He will cover you with his feathers. He will shelter you with his wings. His faithful promises are your armor and protection.
There is absolutely nothing to fear about tomorrow; for God is already there.
Wednesday, February 1, 2012
3 weeks old today!
Riley is three weeks old today! We just got an update from the nurse and she said he's doing good. He is starting to make noise, to me it sounds like Chewbacca. Craig says it's more of an Ewok noise. Nevertheless, Riley is imitating some sort of Star Wars character because of the tube down his throat. It's great to hear sound coming from my son.
The doctors have made no major changes to him the last few days, just letting him be and continue to recover. The nurses have been able to lower his oxygen level to as low as 45%, sometimes they have to increase the level if they have to draw blood or do anything that disturbs him. I learned yesterday that we all breathe 21% oxygen so that is as low as they will go on the machine. This does not mean, however, that he won't need help breathing. His lungs are still developing and the ventilators help him inflate his lungs as he breathes.
Below are a few verses about children. Craig and I are blessed because every little new thing Riley does is special and we thank God for it. We will not take anything for granted, we will cherish every moment with Riley. So even when your child is throwing up all over you, spilling their juice on your carpet, or just irritating you to no end, please remember that your child is a gift from God.
The doctors have made no major changes to him the last few days, just letting him be and continue to recover. The nurses have been able to lower his oxygen level to as low as 45%, sometimes they have to increase the level if they have to draw blood or do anything that disturbs him. I learned yesterday that we all breathe 21% oxygen so that is as low as they will go on the machine. This does not mean, however, that he won't need help breathing. His lungs are still developing and the ventilators help him inflate his lungs as he breathes.
Below are a few verses about children. Craig and I are blessed because every little new thing Riley does is special and we thank God for it. We will not take anything for granted, we will cherish every moment with Riley. So even when your child is throwing up all over you, spilling their juice on your carpet, or just irritating you to no end, please remember that your child is a gift from God.
Psalm 112:2 My children are blessed and will be mighty in the land.
Psalm 127:3 My children are a reward and gift from the Lord, and I will enjoy them.
Psalm 138:8 My children will fulfill God's will and purpose for their lives.
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