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.
Friday, February 3, 2012
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.
Tuesday, January 31, 2012
Riley's Prayer
Monday was a good day for Riley. He gradually improved throughout the day allowing the nurses to lower his oxygen and dopamine levels. I just called now (5:15 am, Tuesday) and his nurse said she has been able to ween him even more throughout the night because his blood gases are continuing to look good. He is also giving good diapers which is helping his swelling go down little by little.
He is not on the paralytic now and yesterday he was squeezing our fingers and moving his feet around a lot actually. He's got a strong grip for a little baby who's fighting for his life. When I start to pull my finger away he holds on tight and pulls it back. It's so cute.
Maybe a week after he was born, my mom brought me this prayer. It's Riley's prayer to God. I love reading it and thought you might like to as well.
Dear God,
I have a request to make.
Just a moment of your time it will take
You see, my parents, are heartbroken and sad,
and they prayed to you with all they had.
Could you just hug them and remind them you care,
as they are wishing I was at home, not here.
This time is confusing, unlike how they pictured it would be.
But I want them to know that you take care of me.
Although I am sleeping in this little bed,
And I am often too tired to raise my little head,
please remind them that I know they did their very best.
And that at night I am protected as I sleep on your chest.
They think I am so lonely when they are away,
and if I could tell them, I would say
I know this is hard, and God understands,
But just know He has never let go of my hand.
He is always with me, like He is with you,
and all this has purpose too.
And God, while I am in the temporary NICU home,
I just want them to know I have never been alone.
Thank you God for always taking care of our little family.
Proverbs 3:5-6
Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.
The path I had foreseen for Riley has been altered, this verse reminds me that although things may not turn out the way you had planned...it's okay because God has a better plan in mind. I may have difficuly understanding what the plan is now, but I don't need to understand, I just need to trust God.
He is not on the paralytic now and yesterday he was squeezing our fingers and moving his feet around a lot actually. He's got a strong grip for a little baby who's fighting for his life. When I start to pull my finger away he holds on tight and pulls it back. It's so cute.
Maybe a week after he was born, my mom brought me this prayer. It's Riley's prayer to God. I love reading it and thought you might like to as well.
Dear God,
I have a request to make.
Just a moment of your time it will take
You see, my parents, are heartbroken and sad,
and they prayed to you with all they had.
Could you just hug them and remind them you care,
as they are wishing I was at home, not here.
This time is confusing, unlike how they pictured it would be.
But I want them to know that you take care of me.
Although I am sleeping in this little bed,
And I am often too tired to raise my little head,
please remind them that I know they did their very best.
And that at night I am protected as I sleep on your chest.
They think I am so lonely when they are away,
and if I could tell them, I would say
I know this is hard, and God understands,
But just know He has never let go of my hand.
He is always with me, like He is with you,
and all this has purpose too.
And God, while I am in the temporary NICU home,
I just want them to know I have never been alone.
Thank you God for always taking care of our little family.
Proverbs 3:5-6
Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge him, and he will make your paths straight.
The path I had foreseen for Riley has been altered, this verse reminds me that although things may not turn out the way you had planned...it's okay because God has a better plan in mind. I may have difficuly understanding what the plan is now, but I don't need to understand, I just need to trust God.
Monday, January 30, 2012
The Nicu rollercoaster
Remember your first rollercoaster ride? I imagine you felt they way I did, scared, nervous, and excited. These feelings intensify as you slowly make the incline towards the top, knowing that a long drop, twist, and turns are up ahead. Well, we have officially started the nicu rollercoaster ride.
When we got to the hospital on Saturday, we noticed he was not feeling well at all. He had been spitting up and his vitals were lower than normal. The doc said she thinks he might have an infection and was going to start antibiotics and take him off his feed.
A short while later, I got up to do something and I noticed his vitals were dropping quickly, I was scared out of my mind and I couldn't say anything. I just looked at Craig and he knew immediately something was wrong. The nurse called the rapid response team and within a few seconds there were several people around Riley. Craig and I moved off into a corner, but I was very scared and I couldn't stay there. We went into the wash room and he held me and we prayed. I calmed down a little and we walked back in the nicu but stood at the entrance so Craig could watch what was happening and I could sit down. One of the nurses brought me some tissue and we just prayed. They worked on him for what seemed like forever. Our nurse that day came to update us at one point saying they got his heartrate back up and they were still working on him. This was a little bit of a relief as I had never seen his heartrate that low.
Finally, the doctor came to update us. He grabbed a chair and sat down with us. He said that Riley most likely has an infection. He told us they put him back on the oscillator, which we could hear going, and were going to give him a paralytic. Basically, he was back to the same care he received the first days of his life. Doc said his swelling will come back and we just have to wait to see what the oscillator does for him. They also increased his dopamine to the maximum to help raise his blood pressure. They said if his blood pressure could come back up, then everything else should fall back into place.
Craig contacted our families when Riley became critical and within a few hours we had several family members in the waiting room there to support us. This was a great comfort. Craig and I prayed with all of them at separate times. We have a strong christian family and we know our family is only becoming stronger in Christ, we hope you are too. Now is the time to grow your relationship with God, not tomorrow or the day after. It will only help you. He will give you comfort, peace, love, everything you need. I know I've said this before, but I could not get through this without God. I receive my strength from him.
Craig and I did not want to leave the hospital Saturday night and the nurses were kind enough to find us an open room in the hospital so we could be close. We stayed at his bedside until around 2 am then went to the room. We woke up in the morning and went back to see him. His vitals were slowly increasing. Since then, he has fought hard and his vitals are now back to where they should be. His urine output is increasing as well, which will help him get rid of the fluid that has built up again. It's hard to see his swelling increase instead of decreasing like it was, but we will trust God that this is all in his plan and he is taking care of Riley.
We thank all of the prayer warriors who prayed their hearts out these past few days for our little man, God really does listen and answers prayers. I will leave you with a verse my Aunt Tess sent me yesterday. It reminds me to always turn to God.
7 “Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. (Matthew 7:7, NIV)
I will be asking, seeking, and knocking always.
When we got to the hospital on Saturday, we noticed he was not feeling well at all. He had been spitting up and his vitals were lower than normal. The doc said she thinks he might have an infection and was going to start antibiotics and take him off his feed.
A short while later, I got up to do something and I noticed his vitals were dropping quickly, I was scared out of my mind and I couldn't say anything. I just looked at Craig and he knew immediately something was wrong. The nurse called the rapid response team and within a few seconds there were several people around Riley. Craig and I moved off into a corner, but I was very scared and I couldn't stay there. We went into the wash room and he held me and we prayed. I calmed down a little and we walked back in the nicu but stood at the entrance so Craig could watch what was happening and I could sit down. One of the nurses brought me some tissue and we just prayed. They worked on him for what seemed like forever. Our nurse that day came to update us at one point saying they got his heartrate back up and they were still working on him. This was a little bit of a relief as I had never seen his heartrate that low.
Finally, the doctor came to update us. He grabbed a chair and sat down with us. He said that Riley most likely has an infection. He told us they put him back on the oscillator, which we could hear going, and were going to give him a paralytic. Basically, he was back to the same care he received the first days of his life. Doc said his swelling will come back and we just have to wait to see what the oscillator does for him. They also increased his dopamine to the maximum to help raise his blood pressure. They said if his blood pressure could come back up, then everything else should fall back into place.
Craig contacted our families when Riley became critical and within a few hours we had several family members in the waiting room there to support us. This was a great comfort. Craig and I prayed with all of them at separate times. We have a strong christian family and we know our family is only becoming stronger in Christ, we hope you are too. Now is the time to grow your relationship with God, not tomorrow or the day after. It will only help you. He will give you comfort, peace, love, everything you need. I know I've said this before, but I could not get through this without God. I receive my strength from him.
Craig and I did not want to leave the hospital Saturday night and the nurses were kind enough to find us an open room in the hospital so we could be close. We stayed at his bedside until around 2 am then went to the room. We woke up in the morning and went back to see him. His vitals were slowly increasing. Since then, he has fought hard and his vitals are now back to where they should be. His urine output is increasing as well, which will help him get rid of the fluid that has built up again. It's hard to see his swelling increase instead of decreasing like it was, but we will trust God that this is all in his plan and he is taking care of Riley.
We thank all of the prayer warriors who prayed their hearts out these past few days for our little man, God really does listen and answers prayers. I will leave you with a verse my Aunt Tess sent me yesterday. It reminds me to always turn to God.
7 “Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. (Matthew 7:7, NIV)
I will be asking, seeking, and knocking always.
Friday, January 27, 2012
A Pet for Riley
Meet Blue. He is Riley's pet that his Aunt Celest gave him. He, along with God, stays in the incubator with Riley and watches over him while we are not there. He's very soft and barks too.
Attached to Riley's foot is a lead to read how much oxygen is in his blood, called the pulse ox monitor . They rotate this lead every few days between his other foot and his right hand. The desired level is 100%, they lower the amount of oxygen supplied to him based on this level. He was on 53% supplied oxygen most of the day today.
Riley's lungs are continuing to improve, we pray that each x-ray shows continued improvement. Thank you for your continued prayers. God is working miracles through our child and we hope he is working in your life too. It is amazing what will
happen when you trust God.
Wednesday, January 25, 2012
In Jesus Name
First, let me thank you for your prayers for Riley's lungs. He improved throughout the day, his oxygen level was back down to 49% when we left tonight. The lower number the better. He started the day off at 100% where he had not been for several days. He had two chest xrays today, both showing slight improvement. They will coninue to monitor him with chest xrays until they believe they can remove the chest tube.
He also is back on dopamine and morphine to help with his blood pressure and pain. His blood pressure is returning to desired levels so they may stop the dopamine soon, not sure though. The good news is he continues to accept the milk with no problems and his urine output is good.
When we arrived after shift change tonight, the nurse was checking him out so his incubator was open. It's nice when the top is up so you can look at him without looking through plexyglass (at least I think that's what the material is). I changed his diaper and Hannah, his nurse, decided we should also change his bedding. She asked me if I wanted to lift Riley up and I was very hesitant. I watched her lift Riley up to be weighed the night before and it was nerve racking just watching someone else do it. He has two tubes in his mouth that are elevated above him attached to the back of the incubator. He has a central line coming out of his upper abdomen, another line out of his left wrist, and many sensors attached to his body at various places. Not to mention the fact that he's tiny and swollen. He looked very uncomfortable when she picked him up last night so with the additional chest tube added to all that other stuff, I did not want to pick him up. Reading that sentence again is so weird because I just said I did not want to pick up my son, but he looks so fragile and I don't want to disturb anything that is helping him survive. So, Hannah picked him up and Craig changed his bedding quickly. Riley did pretty good through the whole thing, I was proud of him.
I used this verse to pray today, 14 If you ask anything in My name, I will do it. (John 14:14). I made sure to say "In Jesus name" before I asked God to heal Riley's lungs and his whole body. My friend Debbie sent me a text this afternoon with a prayer starting with "In Jesus name". It makes it real easy to know that God is speaking to you when he uses many different ways.
My friend Rachel gave me great words of wisdom to use when I am feeling down. She said to repeat "Be still and know that I am God, Be still and know, Be Still, Be". This was very helpful tonight. When we arrive at the hospital now, Craig drops me off at the entrance and I wait for him to park the car. Well tonight there was a couple getting ready to go home with their newborn baby. The nurses were going over how to strap the baby in a car seat and you could tell they were a little nervous and listening intently. We've seen couples leaving with their babies before but this time it got to me. I was starting to get upset and I just repeated what Rachel suggested over and over again until I was peaceful. I don't want to go to that place of jealousy and envy. That is not of God, but of the devil. Thank you Rachel for those words.
Please continue to pray for baby Riley's lungs and my milk supply. I started taking some fenugreek to help with the milk issue. In Jesus name, I will have good news for you soon!
Riley thanks you and says keep on praying!
He also is back on dopamine and morphine to help with his blood pressure and pain. His blood pressure is returning to desired levels so they may stop the dopamine soon, not sure though. The good news is he continues to accept the milk with no problems and his urine output is good.
When we arrived after shift change tonight, the nurse was checking him out so his incubator was open. It's nice when the top is up so you can look at him without looking through plexyglass (at least I think that's what the material is). I changed his diaper and Hannah, his nurse, decided we should also change his bedding. She asked me if I wanted to lift Riley up and I was very hesitant. I watched her lift Riley up to be weighed the night before and it was nerve racking just watching someone else do it. He has two tubes in his mouth that are elevated above him attached to the back of the incubator. He has a central line coming out of his upper abdomen, another line out of his left wrist, and many sensors attached to his body at various places. Not to mention the fact that he's tiny and swollen. He looked very uncomfortable when she picked him up last night so with the additional chest tube added to all that other stuff, I did not want to pick him up. Reading that sentence again is so weird because I just said I did not want to pick up my son, but he looks so fragile and I don't want to disturb anything that is helping him survive. So, Hannah picked him up and Craig changed his bedding quickly. Riley did pretty good through the whole thing, I was proud of him.
I used this verse to pray today, 14 If you ask anything in My name, I will do it. (John 14:14). I made sure to say "In Jesus name" before I asked God to heal Riley's lungs and his whole body. My friend Debbie sent me a text this afternoon with a prayer starting with "In Jesus name". It makes it real easy to know that God is speaking to you when he uses many different ways.
My friend Rachel gave me great words of wisdom to use when I am feeling down. She said to repeat "Be still and know that I am God, Be still and know, Be Still, Be". This was very helpful tonight. When we arrive at the hospital now, Craig drops me off at the entrance and I wait for him to park the car. Well tonight there was a couple getting ready to go home with their newborn baby. The nurses were going over how to strap the baby in a car seat and you could tell they were a little nervous and listening intently. We've seen couples leaving with their babies before but this time it got to me. I was starting to get upset and I just repeated what Rachel suggested over and over again until I was peaceful. I don't want to go to that place of jealousy and envy. That is not of God, but of the devil. Thank you Rachel for those words.
Please continue to pray for baby Riley's lungs and my milk supply. I started taking some fenugreek to help with the milk issue. In Jesus name, I will have good news for you soon!
Riley thanks you and says keep on praying!
Subscribe to:
Posts (Atom)