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.
Tuesday, January 31, 2012
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!
Faith
"Amazing" is how Dr. McIntyre described Riley's recovery this morning. Yet another medical professional who has been amazed by our son. Craig and I make sure we tell them each time we get a good report, which is almost always, that we are praying and believing in God that Riley will be a healthy boy.
Riley weighed 3 lbs 4 oz this morning. The doc said this is good because now he weighs close to what would be expected of a baby born at 27 weeks. He is continuing to look less swollen everyday and now his color is looking better too. He has been anything from dark brown to deep red because of the amount of blood transfusions he has received. Now, his hands and feet are beginning to turn pink.
His bilirubin level went down on his last test so the liver is doing its job a little better. He also is receiving twice the amount of milk per hour than he did yesterday. He now receives 2 ccs/hr. Please continue to pray for the milk supply! He is digesting the food well as he had two more poopy diapers today. Still haven't witnessed one yet, he seems to only do this early in the morning. His parents are NOT friends of the morning. I know, I know...once Riley comes home we will have to learn to love the morning. Or at least pretend to for Riley's sake.
They lowered his oxygen level to 35% today after we were there for awhile. His vitals always improve when we are there. Especially his blood pressure, it usually will gradually increase every time. He knows his mommy and daddy are there and that we love him dearly. He loves us back too! Oh I can't wait to hold him, we haven't asked when that might happen. We know they have to take out the line that is in his left wrist to do so, but have no idea a time frame. I don't want to know the time frame, whenever that day comes I will be ecstatic and probably cry like a baby.
I had an accomplishment of my own today, I went without a wheelchair the entire day. Like I said before, it's a long walk from the valet entrance to Nicu III. We figured out a shorter route and now I am wheelchair free. Craig is enjoying this as well, I was getting pretty spoiled with him wheeling me around everywhere. I think he enjoyed it a little bit since he was taking care of me. I walked by myself to the restroom a few times which gave Craig alone time with Riley. I know Craig enjoys this and Riley does too. They are going to have a really strong bond, I just know it.
I went to the restroom shortly after Dr. McIntyre gave us such a good report this morning and I just thanked God the whole trip. I felt like I was smiling from ear to ear I was so happy. I feel so lucky that God chose me to be Riley's mom. I am lucky enough to see first hand the miraculous works of God. I have never been so happy in all my life, which is strange because of our situation. Logically, you would think this would be the worst time in my life, but that is so far from the truth. I am excited as to what the future holds for my family and where God will lead us.
One of my friends on facebook told me today that my faith was amazing. Faith is a must have in situations like this. Craig and I have to remind ourselves daily to "keep the faith". When you let your mind wander into the place of negativity and doubt, that eats at your soul and you start to slip away from God and his greatness. There are many stories in the bible where God has proven he can do anything. Jesus performed many miracles here on earth and he is performing one right now in our son Riley. Faith is a powerful fruit of the spirit. It is proven here, 51 So Jesus answered and said to him, “What do you want Me to do for you?” The blind man said to Him, “Rabboni, that I may receive my sight.”
52 Then Jesus said to him, “Go your way; your faith has made you well.” And immediately he received his sight and followed Jesus on the road. (Mark 10:51-52, NKJV). Our faith is healing Riley. We have asked and he has answered. Thank you God!
*So as I am about to publish this entry, we get a call from the hospital. The nurse practitioner says that they had to put in a chest tube because a problem was discovered in one of his lungs. Apparently, at some point this evening there was a small perforation in his lung that caused a collapse. Please pray for further development and healing in Riley's lungs. We have faith God will hear all of our prayers.
Riley weighed 3 lbs 4 oz this morning. The doc said this is good because now he weighs close to what would be expected of a baby born at 27 weeks. He is continuing to look less swollen everyday and now his color is looking better too. He has been anything from dark brown to deep red because of the amount of blood transfusions he has received. Now, his hands and feet are beginning to turn pink.
His bilirubin level went down on his last test so the liver is doing its job a little better. He also is receiving twice the amount of milk per hour than he did yesterday. He now receives 2 ccs/hr. Please continue to pray for the milk supply! He is digesting the food well as he had two more poopy diapers today. Still haven't witnessed one yet, he seems to only do this early in the morning. His parents are NOT friends of the morning. I know, I know...once Riley comes home we will have to learn to love the morning. Or at least pretend to for Riley's sake.
They lowered his oxygen level to 35% today after we were there for awhile. His vitals always improve when we are there. Especially his blood pressure, it usually will gradually increase every time. He knows his mommy and daddy are there and that we love him dearly. He loves us back too! Oh I can't wait to hold him, we haven't asked when that might happen. We know they have to take out the line that is in his left wrist to do so, but have no idea a time frame. I don't want to know the time frame, whenever that day comes I will be ecstatic and probably cry like a baby.
I had an accomplishment of my own today, I went without a wheelchair the entire day. Like I said before, it's a long walk from the valet entrance to Nicu III. We figured out a shorter route and now I am wheelchair free. Craig is enjoying this as well, I was getting pretty spoiled with him wheeling me around everywhere. I think he enjoyed it a little bit since he was taking care of me. I walked by myself to the restroom a few times which gave Craig alone time with Riley. I know Craig enjoys this and Riley does too. They are going to have a really strong bond, I just know it.
I went to the restroom shortly after Dr. McIntyre gave us such a good report this morning and I just thanked God the whole trip. I felt like I was smiling from ear to ear I was so happy. I feel so lucky that God chose me to be Riley's mom. I am lucky enough to see first hand the miraculous works of God. I have never been so happy in all my life, which is strange because of our situation. Logically, you would think this would be the worst time in my life, but that is so far from the truth. I am excited as to what the future holds for my family and where God will lead us.
One of my friends on facebook told me today that my faith was amazing. Faith is a must have in situations like this. Craig and I have to remind ourselves daily to "keep the faith". When you let your mind wander into the place of negativity and doubt, that eats at your soul and you start to slip away from God and his greatness. There are many stories in the bible where God has proven he can do anything. Jesus performed many miracles here on earth and he is performing one right now in our son Riley. Faith is a powerful fruit of the spirit. It is proven here, 51 So Jesus answered and said to him, “What do you want Me to do for you?” The blind man said to Him, “Rabboni, that I may receive my sight.”
52 Then Jesus said to him, “Go your way; your faith has made you well.” And immediately he received his sight and followed Jesus on the road. (Mark 10:51-52, NKJV). Our faith is healing Riley. We have asked and he has answered. Thank you God!
*So as I am about to publish this entry, we get a call from the hospital. The nurse practitioner says that they had to put in a chest tube because a problem was discovered in one of his lungs. Apparently, at some point this evening there was a small perforation in his lung that caused a collapse. Please pray for further development and healing in Riley's lungs. We have faith God will hear all of our prayers.
Monday, January 23, 2012
Riley's Birthday from my perspective
Before I start telling the story, I'll update you on Riley. He had another great day. He made his first poopy diaper with no medicinal assistance. We learned this on our daily morning phone call. I must be honest, I was actually sad that I was not there to witness it. I heard it looks like tar, I'm sure he'll be given me plenty of poopy diapers in the future. He's been off dopamine for 24 hours now and hasn't had a blood transfusion or platelets in over 24 hours. These are all wonderful accomplishments and we praise God that we continue to only receive good reports from the doctors and nurses.
Wednesday, January 11 started out a normal day. I went to work and the bell rang for first period. We begin Wednesdays with mental math warm-ups so I was walking around giving directions to the students. During this time, I started to feel pain in my lower rib cage on my left side. I have had pain similar to this before and it was just gas so I was trying to ignore it and continue teaching. The pain continued to get worse, I tried to sit down in different positions, stand up against the wall, walk around, nothing was alleviating the pain. Luckily, I have a co-teacher 1st period so I decided to go to the nurse just to lay down for a bit. I was there about 10 minutes or so and was talking to my instructional coach when she and the nurse suggested I called my doctor. The nurse at the doctor's office asked me a few questions, reported to Dr. Lloyd and told me to come in at 1:30 pm. I left school immediately after the phone call and went home to rest. I really thought it was just bad gas and that it would eventually subside.
My Nanny and Papa were able to take me to the doctor and we arrived promptly at 1:30. One of my good friends, Maryssa, actually walked in right behind me with her new baby. She asked me if everything was okay and I think I said something like, "I don't think so". The first thing the nurse did was check Riley's heartbeat and his heart was beating in the normal range so that gave me a sigh of relief. She also took my blood pressure, which was kind of high, but not too bad. Dr. Lloyd came in shortly after the nurse left and asked me questions like, where was the pain, how long have you had this, have you had any headaches lately, etc. Based on my answers, he said I was to go to the hospital directly to labor and delivery. He then said 1 of 3 things could happen. I could just need to rest and stay there for a little while, or I might stay there for a few days, or I could have a baby today. When he said the last option, I actually laughed and said, "okay".
The hospital is about 45 minutes away from the Kingwood office where I saw Dr. Lloyd so of course I was looking on my iphone researching my symptoms and what could be happening to me. My diagnosis was pre eclampsia. I had most all the symptoms listed on the website. I also called my husband on the drive downtown to let him know the situation. I tried to sound calm and not too worried.
When we arrived at the hospital, they put two straps on my belly. One was to observe contractions and I think the other was the fetal monitor. It's all a little hazy. The nurse said she could see my baby and that he looked good. She told me later on that she lied to me because my Nanny and Papa were in the room and she didn't want to upset them. Nice. What shocked me was when she told me I was having contractions every 1 to 3 minutes. I NEVER considered I was having contractions. I thought contraction pain was supposed to be down low, my pain was by my ribs. This is the point where the events become a little unclear. I'm pretty sure I went into shock after she told me I was having contractions.
They gave me medicine to stop the contractions, which was difficult due to the fact that I was severley dehydrated. I was so worried about the baby that I didn't drink anything for several hours. The medicine was starting to work so that gave me some hope. During this time, Craig arrived and I immediately felt better.
Dr. Lloyd came in the room and told Craig and I they wanted a high risk doctor to do an ultrasound on the baby just to check everything out. I did not like the sound of that, but kept telling myself I heard his heartbeat and it was still beating so he had to be fine.
They rolled me to the ultrasound room and the high risk doctor put the cold stuff on my belly and began. Immediatley, he said, "something's wrong". Not a good start. I remember him repeating over and over, "I don't know why this baby is doing this". He told Dr. Lloyd, "look at the swelling, look at the stomach, look at the head". Apparently, Riley was measuring different weeks on different parts of his body due to the amount of swelling. He kept asking how far along I was, you could tell he was confused. Dr. Lloyd and the high risk doctor talked for what seemed like forever only to each other discussing the baby and myself. Then the high risk doctor said the word "hydrops". When he said this word, you could physically see Dr. Lloyd's shoulders drop and he got real quiet. My nurse put her head down and squeezed my arm. Of course, Craig and I had no idea what hydrops was or what was happening. He said the baby is retaining an excessive amount of fluid and that his was a mirror syndrome so now I was retaing fluid as well. The placenta was massive.
The high risk doctor said we had to terminate the pregnancy that night because now the most important thing was my health, like the baby was gone and didn't matter anymore. All I kept thinking was, I can see his heartbeat, I can see his heartbeat, he's alive, what is happening. Craig asked what our options were since they decided I must deliver immediatley. The high risk doctor said we could induce labor and since this was my first pregnancy and I'm barely dilated, it could take hours and we would most certainly have a stillborn. I think after he spoke those words I checked myself out mentally and emotionally. This was a nightmare that I wanted to wake up from so badly but couldn't.
The other option was to have a c-section and the doctor said and I quote "the chances are one in a million" that Riley would make it through delivery. So you're saying there's a chance. Again, I was checked out so I remember these words but I was numb so didn't really react to them. Craig did all the talking. We decided on the c-section and waited for labs about my platelet count to see if I could have an epidural or would need to be under general anesthetic. Labs came back and I had to be put all the way under because my platelets were really low and they had some major concerns trying to do an epidural. So now, not only do I have to give birth to a baby that has a slim chance to live, but my husband can't even be in the room with me. To be honest, this was way more difficult for him than me. I'll let him tell you about it sometime.
From the point where it was decided I must deliver to when I was actually rolled into the operating room must have been hours. I lost track of time. Craig stayed with me until they took me into surgery, we had a lot of family in the waiting room but I did not want anyone with me but my husband. When Craig and I decided that he should go tell everyone what was going on and I was by myself for a few minutes, I felt this sense of peace and energy around me. I knew he was out there with our family praying. I became very calm and just tried to focus on the positive energy.
Once, I was in the operating room they told me something about how they had to do things a little differnet with me and prep me all first before they put me under. Things like put the cathedar in, which as you can imagine was such a great experience! Anyway, the next thing I remember is waking up and seeing Craig. He told me Riley was in nicu and the doctors were working on him. I didn't really comprehend this at all, I just knew I was awake and my husband was in front of me. The day ended by me checking into an ICU room and visiting with my family. Not sure what was said, but I know they were there.
That was a rough day but also the greatest day because I gave birth to my son who is alive and doing well thanks to Our Father, God Almighty. I feel so blessed to be Riley's mother. He is an angel here on earth and will continue to bless me and others. I hope his story has blessed many of you already and will do so in the future. 11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. (Jeremiah 29:11, NKJV)
I wanted to leave you with a request. As you know, my son is eating now. I have been pumping since day 4 or 5 and it seemed to increase a few days ago but now has slacked off. They are running out of my breast milk and I ask that you pray that God help me provide nourishment for my son. I can only do so much for him right now and I want to provide his food so badly. I know that God will hear our prayers and I will be filling up those bottles in no time!
Wednesday, January 11 started out a normal day. I went to work and the bell rang for first period. We begin Wednesdays with mental math warm-ups so I was walking around giving directions to the students. During this time, I started to feel pain in my lower rib cage on my left side. I have had pain similar to this before and it was just gas so I was trying to ignore it and continue teaching. The pain continued to get worse, I tried to sit down in different positions, stand up against the wall, walk around, nothing was alleviating the pain. Luckily, I have a co-teacher 1st period so I decided to go to the nurse just to lay down for a bit. I was there about 10 minutes or so and was talking to my instructional coach when she and the nurse suggested I called my doctor. The nurse at the doctor's office asked me a few questions, reported to Dr. Lloyd and told me to come in at 1:30 pm. I left school immediately after the phone call and went home to rest. I really thought it was just bad gas and that it would eventually subside.
My Nanny and Papa were able to take me to the doctor and we arrived promptly at 1:30. One of my good friends, Maryssa, actually walked in right behind me with her new baby. She asked me if everything was okay and I think I said something like, "I don't think so". The first thing the nurse did was check Riley's heartbeat and his heart was beating in the normal range so that gave me a sigh of relief. She also took my blood pressure, which was kind of high, but not too bad. Dr. Lloyd came in shortly after the nurse left and asked me questions like, where was the pain, how long have you had this, have you had any headaches lately, etc. Based on my answers, he said I was to go to the hospital directly to labor and delivery. He then said 1 of 3 things could happen. I could just need to rest and stay there for a little while, or I might stay there for a few days, or I could have a baby today. When he said the last option, I actually laughed and said, "okay".
The hospital is about 45 minutes away from the Kingwood office where I saw Dr. Lloyd so of course I was looking on my iphone researching my symptoms and what could be happening to me. My diagnosis was pre eclampsia. I had most all the symptoms listed on the website. I also called my husband on the drive downtown to let him know the situation. I tried to sound calm and not too worried.
When we arrived at the hospital, they put two straps on my belly. One was to observe contractions and I think the other was the fetal monitor. It's all a little hazy. The nurse said she could see my baby and that he looked good. She told me later on that she lied to me because my Nanny and Papa were in the room and she didn't want to upset them. Nice. What shocked me was when she told me I was having contractions every 1 to 3 minutes. I NEVER considered I was having contractions. I thought contraction pain was supposed to be down low, my pain was by my ribs. This is the point where the events become a little unclear. I'm pretty sure I went into shock after she told me I was having contractions.
They gave me medicine to stop the contractions, which was difficult due to the fact that I was severley dehydrated. I was so worried about the baby that I didn't drink anything for several hours. The medicine was starting to work so that gave me some hope. During this time, Craig arrived and I immediately felt better.
Dr. Lloyd came in the room and told Craig and I they wanted a high risk doctor to do an ultrasound on the baby just to check everything out. I did not like the sound of that, but kept telling myself I heard his heartbeat and it was still beating so he had to be fine.
They rolled me to the ultrasound room and the high risk doctor put the cold stuff on my belly and began. Immediatley, he said, "something's wrong". Not a good start. I remember him repeating over and over, "I don't know why this baby is doing this". He told Dr. Lloyd, "look at the swelling, look at the stomach, look at the head". Apparently, Riley was measuring different weeks on different parts of his body due to the amount of swelling. He kept asking how far along I was, you could tell he was confused. Dr. Lloyd and the high risk doctor talked for what seemed like forever only to each other discussing the baby and myself. Then the high risk doctor said the word "hydrops". When he said this word, you could physically see Dr. Lloyd's shoulders drop and he got real quiet. My nurse put her head down and squeezed my arm. Of course, Craig and I had no idea what hydrops was or what was happening. He said the baby is retaining an excessive amount of fluid and that his was a mirror syndrome so now I was retaing fluid as well. The placenta was massive.
The high risk doctor said we had to terminate the pregnancy that night because now the most important thing was my health, like the baby was gone and didn't matter anymore. All I kept thinking was, I can see his heartbeat, I can see his heartbeat, he's alive, what is happening. Craig asked what our options were since they decided I must deliver immediatley. The high risk doctor said we could induce labor and since this was my first pregnancy and I'm barely dilated, it could take hours and we would most certainly have a stillborn. I think after he spoke those words I checked myself out mentally and emotionally. This was a nightmare that I wanted to wake up from so badly but couldn't.
The other option was to have a c-section and the doctor said and I quote "the chances are one in a million" that Riley would make it through delivery. So you're saying there's a chance. Again, I was checked out so I remember these words but I was numb so didn't really react to them. Craig did all the talking. We decided on the c-section and waited for labs about my platelet count to see if I could have an epidural or would need to be under general anesthetic. Labs came back and I had to be put all the way under because my platelets were really low and they had some major concerns trying to do an epidural. So now, not only do I have to give birth to a baby that has a slim chance to live, but my husband can't even be in the room with me. To be honest, this was way more difficult for him than me. I'll let him tell you about it sometime.
From the point where it was decided I must deliver to when I was actually rolled into the operating room must have been hours. I lost track of time. Craig stayed with me until they took me into surgery, we had a lot of family in the waiting room but I did not want anyone with me but my husband. When Craig and I decided that he should go tell everyone what was going on and I was by myself for a few minutes, I felt this sense of peace and energy around me. I knew he was out there with our family praying. I became very calm and just tried to focus on the positive energy.
Once, I was in the operating room they told me something about how they had to do things a little differnet with me and prep me all first before they put me under. Things like put the cathedar in, which as you can imagine was such a great experience! Anyway, the next thing I remember is waking up and seeing Craig. He told me Riley was in nicu and the doctors were working on him. I didn't really comprehend this at all, I just knew I was awake and my husband was in front of me. The day ended by me checking into an ICU room and visiting with my family. Not sure what was said, but I know they were there.
That was a rough day but also the greatest day because I gave birth to my son who is alive and doing well thanks to Our Father, God Almighty. I feel so blessed to be Riley's mother. He is an angel here on earth and will continue to bless me and others. I hope his story has blessed many of you already and will do so in the future. 11 For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future. (Jeremiah 29:11, NKJV)
I wanted to leave you with a request. As you know, my son is eating now. I have been pumping since day 4 or 5 and it seemed to increase a few days ago but now has slacked off. They are running out of my breast milk and I ask that you pray that God help me provide nourishment for my son. I can only do so much for him right now and I want to provide his food so badly. I know that God will hear our prayers and I will be filling up those bottles in no time!
Sunday, January 22, 2012
Yummy to my Tummy
Guess who's eating now? That's right, my wonderful amazing son. We learned shortly after arriving to the hospital that Riley was going to soon receive my milk through a tube. I was sitting in a chair in the waiting room visiting some family when Craig told me the great news, I about jumped out of my chair I was so excited. Luckily, I thought better of it or I would have been in some major pain. It is so comforting to know that even though I can't feed him myself, I can still supply my son with "Mamas Gold" as Elizabeth calls it. We learned later in the day that he is starting to digest the milk because the nurse did not see much when she pulled out the residuals. We're waiting for our first poopy diaper...anybody want to see a picture of that? It is a miracle after all. ;)
Our visitors this morning were Grandma and Grandpa Branham and Aunt Danette and Uncle Donald. At one point in our visit, we were discussing the events and how Craig and I were able to handle it so well. One of the reasons I am handling it so well is because of my Dad. He always taught us that it's not what happens to you, it's how you respond. This has helped me a lot throughout my life. He always reiterated to us (my two brothers and me) that you can only control so much in your life. Control what you can and give the rest to God.
13 No temptation has overtaken you except such as is common to man; but God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will also make the way of escape, that you may be able to bear it. (1 Cor 10:13, NKJV)
Our visitors this morning were Grandma and Grandpa Branham and Aunt Danette and Uncle Donald. At one point in our visit, we were discussing the events and how Craig and I were able to handle it so well. One of the reasons I am handling it so well is because of my Dad. He always taught us that it's not what happens to you, it's how you respond. This has helped me a lot throughout my life. He always reiterated to us (my two brothers and me) that you can only control so much in your life. Control what you can and give the rest to God.
13 No temptation has overtaken you except such as is common to man; but God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will also make the way of escape, that you may be able to bear it. (1 Cor 10:13, NKJV)
*The Greek for temptation and tempted can also mean tested. Trust in the Lord always, know that he is with you and you can overcome whatever it is you're facing.
My Grandma and I were lucky enough to be with Riley when he opened his right eye. He is now looking at us with beautiful blue eyes. He loves to look at Daddy the most, when Craig walks away Riley starts looking around for him. It's really fun to watch. I know everyone says when they have a child they never thought they could love anyone that much, well I'm experiencing that now. Looking into his eyes gives me an overwhelming feeling of joy, peace, and comfort. I just smile the whole time. As I gazed into his eyes, I was thinking how giddy in love I am with my son. I know Craig feels the same way.
At one point today, Riley had two tubes in his mouth and a pacifier. He had a lot goin on in there. The pacifier didn't stay in very long so he now has just the two tubes. He is on a continuous feed, so the second tube will need to stay. Some time during the day, Riley looked at me and Craig and I knew he was thinking, "Help me, mommy, get these things out of my mouth!" His little chin was moving up and down like he was trying to cry. This is heartwrenching. I told him that he had to rest and get better and that he was okay. It's more difficult to leave his bedside now that he can look at you. He seems to know when we are leaving and there's a longing look in his eyes that's begging us to take him. Not to mention the fact that once you let go of his hand, he's reaching out for yours. It's pretty painful, I must admit. I never thought I'd be in a situation where I couldn't hold my child when I wanted or have him home with me. It's okay though, God has a plan and we are just gonna watch him reveal it to us.
You may or may not have read the comments left by a couple people on yesterday's post. I wanted to share Natalie's comment here, I think it is worth repeating.
And if Our God is for us, then who could ever stop us
And if our God is with us, then what can stand against?
And if Our God is for us, then who could ever stop us
... And if our God is with us, then what can stand against?
What can stand against?
Our God is greater, our God is stronger
God You are higher than any other
Our God is Healer, awesome and power
Our God, Our God...
Our God is greater, our God is stronger
God You are higher than any other
Our God is Healer, awesome and power
Our God, Our God...
My Grandma and I were lucky enough to be with Riley when he opened his right eye. He is now looking at us with beautiful blue eyes. He loves to look at Daddy the most, when Craig walks away Riley starts looking around for him. It's really fun to watch. I know everyone says when they have a child they never thought they could love anyone that much, well I'm experiencing that now. Looking into his eyes gives me an overwhelming feeling of joy, peace, and comfort. I just smile the whole time. As I gazed into his eyes, I was thinking how giddy in love I am with my son. I know Craig feels the same way.
At one point today, Riley had two tubes in his mouth and a pacifier. He had a lot goin on in there. The pacifier didn't stay in very long so he now has just the two tubes. He is on a continuous feed, so the second tube will need to stay. Some time during the day, Riley looked at me and Craig and I knew he was thinking, "Help me, mommy, get these things out of my mouth!" His little chin was moving up and down like he was trying to cry. This is heartwrenching. I told him that he had to rest and get better and that he was okay. It's more difficult to leave his bedside now that he can look at you. He seems to know when we are leaving and there's a longing look in his eyes that's begging us to take him. Not to mention the fact that once you let go of his hand, he's reaching out for yours. It's pretty painful, I must admit. I never thought I'd be in a situation where I couldn't hold my child when I wanted or have him home with me. It's okay though, God has a plan and we are just gonna watch him reveal it to us.
You may or may not have read the comments left by a couple people on yesterday's post. I wanted to share Natalie's comment here, I think it is worth repeating.
From Natalie, "I love this song (Our God by Chris Tomlin), and am inspired everytime I hear it, but today at church when we sang it it made me think of Riley and brought tears to my eyes, especially this part of the lyrics."
And if Our God is for us, then who could ever stop us
And if our God is with us, then what can stand against?
And if Our God is for us, then who could ever stop us
... And if our God is with us, then what can stand against?
What can stand against?
Our God is greater, our God is stronger
God You are higher than any other
Our God is Healer, awesome and power
Our God, Our God...
Our God is greater, our God is stronger
God You are higher than any other
Our God is Healer, awesome and power
Our God, Our God...
Saturday, January 21, 2012
3 lbs 14 oz
Tonight, we confirmed Riley's birth weight as 3 lbs 14 oz. We have been confused about this because his little info sign on his incubator says 3 lbs 4 oz. Craig had a feeling this was incorrect because it also listed the grams as 1750. He felt the conversion was off. Riley was weighed tonight for the first time since birth and he weighed very close to 3 lbs 14 oz. Craig and I were surprised because he has lost so much fluid since birth and looks smaller everyday, I was expecting him to weigh less than 3 lbs. He was also close to 15 inches long. I think if I carried him full term he would have been very big since I was only 27 weeks, 4 days when he was born. No matter how much he weighed, I am so thankful that he is here.
Riley was given a new medication today, hydrocortizone (a steroid), to help wean him off his blood pressure medicine, dopamine. This morning his dopamine med level was 20 and by the time we left today, it was 3. Allison, his nurse, said he would probably be able to stop receiving the dopamine by the end of her shift. They are basing this off his blood pressure number which they want to be between 35 and 40. The longer he stays close to 40, the more they drop the med level. In Jesus name, he will be off the dopamine by tomorrow and will be able to keep his blood pressure at the desired level without drugs, only with God's help.
When we called this morning to check on him, we learned that they have lowered the amount of oxygen they are putting into his system to 58%. This number was in the low 80s when we left Friday night. God continues to amaze everyone with Riley's speedy recovery.
We went home last night to see our 3 doggies, Fancy, Chance, and Gidget, and to sleep in our own bed. It is hard to leave and know that you will be somewhere that is more than 5 minutes away. However, it felt good to be home and to see our dogs. We told them about their new little brother and that we would bring him home soon. I can't wait to see Riley loving on our big Golden Retreiver, Chance. They are gonna be best friends. The dogs are being well taken care of by our family, they are receiving lots of treats. They probably like us being gone since they are getting so spoiled by their new care takers! We also needed to get more clothes, well mostly me since I wore the same outfit to the hospital several days in a row. The hospital staff was probably thinking, doesn't that woman own anything different! We are back at the hotel now, as close as possible to our son. I can't wait until the day when our little family is all under one roof.
We visited with Riley most of the afternoon, he had many visitors again today. My parents, grandparents, and Craig's parents. They were all very excited to see Riley open his eye and move around a little. You can see the hope in their eyes as they watch him in awe, a baby healing who was not given much hope to begin with by some doctors. God is hope. Believing that God can do all things and knowing that any obstacles set before you he can overcome gives us hope. Psalm 62:5 5 Yes, my soul, find rest in God; my hope comes from him. Don't let anyone speak the word hopeless to you, believe in your heart that God has already done what others chose to believe is hopeless.
After we ate dinner with my family, we went back to spend more time with Riley. We found him with his incubator top open and Allison taking care of him. He had just received his first bath! Well, sponge bath. He will receive another in a few days and we will make sure to be present because she said we could help. Anything we can do to help take care of Riley is a blessing. I'm really excited for bath time! He actually just received his first rubber ducky today from our good friends, Ryan and Dixie. Maybe I can sit it next to him as we wash his little body. He was also wearing a precious little knit cap, it's light blue, green, and white. He looks so cute and warm wearing it!! The coolest event was when Craig asked about him moving his mouth all around and if that was okay. Allison suggested we try to see if he would take a pacifier. Riley has a tube in his mouth so I didn't think this was possible. Then here she comes with the smallest pacifier I have every seen and she worked with Riley to see if he would take it. He did! This lasted only a short while, but I got to try as well and I could feel him do a few sucks on it. Doing things with him at the hospital that we would normally do if he was home is really helping me. It gives me peace and comfot.
I will leave you with a picture of Riley's new blanket we put in his incubator tonight. My friend, Elizabeth, was kind enough to make two blankets, one for his time now in recovery and one for his time at home. It's really cute and we appreciate it a lot. His incubator is looking less clinical and more personalized everyday. Check out his feet too!
Remember to never give up hope, God is Great!
Riley was given a new medication today, hydrocortizone (a steroid), to help wean him off his blood pressure medicine, dopamine. This morning his dopamine med level was 20 and by the time we left today, it was 3. Allison, his nurse, said he would probably be able to stop receiving the dopamine by the end of her shift. They are basing this off his blood pressure number which they want to be between 35 and 40. The longer he stays close to 40, the more they drop the med level. In Jesus name, he will be off the dopamine by tomorrow and will be able to keep his blood pressure at the desired level without drugs, only with God's help.
When we called this morning to check on him, we learned that they have lowered the amount of oxygen they are putting into his system to 58%. This number was in the low 80s when we left Friday night. God continues to amaze everyone with Riley's speedy recovery.
We went home last night to see our 3 doggies, Fancy, Chance, and Gidget, and to sleep in our own bed. It is hard to leave and know that you will be somewhere that is more than 5 minutes away. However, it felt good to be home and to see our dogs. We told them about their new little brother and that we would bring him home soon. I can't wait to see Riley loving on our big Golden Retreiver, Chance. They are gonna be best friends. The dogs are being well taken care of by our family, they are receiving lots of treats. They probably like us being gone since they are getting so spoiled by their new care takers! We also needed to get more clothes, well mostly me since I wore the same outfit to the hospital several days in a row. The hospital staff was probably thinking, doesn't that woman own anything different! We are back at the hotel now, as close as possible to our son. I can't wait until the day when our little family is all under one roof.
We visited with Riley most of the afternoon, he had many visitors again today. My parents, grandparents, and Craig's parents. They were all very excited to see Riley open his eye and move around a little. You can see the hope in their eyes as they watch him in awe, a baby healing who was not given much hope to begin with by some doctors. God is hope. Believing that God can do all things and knowing that any obstacles set before you he can overcome gives us hope. Psalm 62:5 5 Yes, my soul, find rest in God; my hope comes from him. Don't let anyone speak the word hopeless to you, believe in your heart that God has already done what others chose to believe is hopeless.
After we ate dinner with my family, we went back to spend more time with Riley. We found him with his incubator top open and Allison taking care of him. He had just received his first bath! Well, sponge bath. He will receive another in a few days and we will make sure to be present because she said we could help. Anything we can do to help take care of Riley is a blessing. I'm really excited for bath time! He actually just received his first rubber ducky today from our good friends, Ryan and Dixie. Maybe I can sit it next to him as we wash his little body. He was also wearing a precious little knit cap, it's light blue, green, and white. He looks so cute and warm wearing it!! The coolest event was when Craig asked about him moving his mouth all around and if that was okay. Allison suggested we try to see if he would take a pacifier. Riley has a tube in his mouth so I didn't think this was possible. Then here she comes with the smallest pacifier I have every seen and she worked with Riley to see if he would take it. He did! This lasted only a short while, but I got to try as well and I could feel him do a few sucks on it. Doing things with him at the hospital that we would normally do if he was home is really helping me. It gives me peace and comfot.
I will leave you with a picture of Riley's new blanket we put in his incubator tonight. My friend, Elizabeth, was kind enough to make two blankets, one for his time now in recovery and one for his time at home. It's really cute and we appreciate it a lot. His incubator is looking less clinical and more personalized everyday. Check out his feet too!
Remember to never give up hope, God is Great!
Valiant and Courageous
This morning I received an email from my Aunt Bobbie explaining the meaning of Riley's name. I'm guessing from the title of this entry you may have figured it out. Valiant and courageous definitely describes our little man. Valiant is basically a synonym for the word courageous. We believe in our hearts that Riley will live up to his name and show us daily what it means to be courageous.
Today was a great day, but kind of an off day too. Not because of Riley's health or progress, but for other reasons. First, I woke up in a lot of pain which I haven't had in a few days. I decided quickly this is the devil trying to bring me down and doing anything he can to disrupt my faith in God and our growing relationship. I immediately told the devil to leave my body and that he would not prevent me from healing and taking care of my son who will need me. I prayed for healing and for God to take the pain away. Before Riley's birth, I probably would have complained about the pain and asked someone to find me pain pills immediately. Don't get me wrong, I took the pills this morning, but it comforted me to cast out the devil and ask God for help as well. I think most of us go to God and ask for whatever it is we need help with, but I think maybe we forget who is trying to cause us pain and interrupt our lives. Next time you are in pain, emotionally, physically, mentally, whatever, try yelling at the devil to stop messing with you! Stand on the name of Jesus and cast him out.
Once we got to the hospital, the devil was continuing to try and effect us through other means. The Nicu is a very secure place. When you arrive at the door, you must call the front desk and state who you are there to see. Then they call the nurse and make sure it is okay to let you inside. Normally, this process takes a matter of seconds, but today almost every time we went to see him, we could not get in. "Ten more minutes please", we were told each time. Ten minutes would turn into 20 minutes, sometimes longer. It's a long way from the hospital entrance to the Nicu, lots of turns and an elevator ride. Right now, I am too weak to walk all that way so Craig has to wheel me there. As I take the ride to the Nicu, I have a rush of emotions. I feel anxious, excited, happy, and relieved. To have all those emotions built up and to be told you can't come in and see your son right away is heartbreaking. It was a little too much today and by the third time, we were very frustrated. They had good reasons to make us wait, running lots of tests which I'll explain in a minute but it's still hard to wait. One of the times, I just thanked God for teaching me patience, trying not to let it effect me too much. The devil does not give up, he will continually come after you, it is a constant struggle but God has defeated him and will continue to defeat him as you call out to him.
Riley had a big day today, starting with a head ultrasound this morning to check for bleeding in the brain. Dr. Gee called us before we got to the hospital and gave us the results. He has a Grade 1, possibly Grade 2 bleed, out of 4 grade levels, 4 being the highest. It is our understanding that in most cases the blood from a Grade 1 bleed is absorbed back into the body and is not a huge concern. They did find fluid in the ventricles of his brain so a neurologist will be talking to us about that soon. Shortly after the head ultrasound, he had a GI ultrasound to check on his liver. There is a certain level, bilirubin, that was a little high on his last test and Dr. Gee wanted to check it out. A GI doctor told us that this is most likely proteins and blood leftover from when they put the central line in yesterday and took out the lines in his belly. Also, he has had many blood transfusions so it will take him time to break all that down. All in all, the Dr. is not immediately concerned but Riley will be tested bi-weekly just to follow up on his levels.
At lunch time, Riley had an Eco done on his heart. We were actually standing behind the tech while she did this, but are obviously not doctors so I had no idea what to look for, I just knew that his little heart was beating. Later tonight, we learned that the anatomy of his heart is all there and it is working well. He does have pulmonary hypertension, but they are watching it closely and will continue to monitor it but overall the heart looks great.
The best thing to happen today was we got to make eye contact with Riley! Our last visit of the day, he opened up his little left eye and looked around at his mommy and daddy who are so proud of him. I started crying almost immediately. To look into his eye and know that he's mine is an awesome feeling. To see him move his eye from side to side looking at Craig and I, his parents, really made me feel like we were a family. Another small victory achieved!
I will leave you with this scripture: 1 Peter 4:8-11 "8 Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. 9 Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings.
10 And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. 11 To him be the power for ever and ever. Amen."
Today was a great day, but kind of an off day too. Not because of Riley's health or progress, but for other reasons. First, I woke up in a lot of pain which I haven't had in a few days. I decided quickly this is the devil trying to bring me down and doing anything he can to disrupt my faith in God and our growing relationship. I immediately told the devil to leave my body and that he would not prevent me from healing and taking care of my son who will need me. I prayed for healing and for God to take the pain away. Before Riley's birth, I probably would have complained about the pain and asked someone to find me pain pills immediately. Don't get me wrong, I took the pills this morning, but it comforted me to cast out the devil and ask God for help as well. I think most of us go to God and ask for whatever it is we need help with, but I think maybe we forget who is trying to cause us pain and interrupt our lives. Next time you are in pain, emotionally, physically, mentally, whatever, try yelling at the devil to stop messing with you! Stand on the name of Jesus and cast him out.
Once we got to the hospital, the devil was continuing to try and effect us through other means. The Nicu is a very secure place. When you arrive at the door, you must call the front desk and state who you are there to see. Then they call the nurse and make sure it is okay to let you inside. Normally, this process takes a matter of seconds, but today almost every time we went to see him, we could not get in. "Ten more minutes please", we were told each time. Ten minutes would turn into 20 minutes, sometimes longer. It's a long way from the hospital entrance to the Nicu, lots of turns and an elevator ride. Right now, I am too weak to walk all that way so Craig has to wheel me there. As I take the ride to the Nicu, I have a rush of emotions. I feel anxious, excited, happy, and relieved. To have all those emotions built up and to be told you can't come in and see your son right away is heartbreaking. It was a little too much today and by the third time, we were very frustrated. They had good reasons to make us wait, running lots of tests which I'll explain in a minute but it's still hard to wait. One of the times, I just thanked God for teaching me patience, trying not to let it effect me too much. The devil does not give up, he will continually come after you, it is a constant struggle but God has defeated him and will continue to defeat him as you call out to him.
Riley had a big day today, starting with a head ultrasound this morning to check for bleeding in the brain. Dr. Gee called us before we got to the hospital and gave us the results. He has a Grade 1, possibly Grade 2 bleed, out of 4 grade levels, 4 being the highest. It is our understanding that in most cases the blood from a Grade 1 bleed is absorbed back into the body and is not a huge concern. They did find fluid in the ventricles of his brain so a neurologist will be talking to us about that soon. Shortly after the head ultrasound, he had a GI ultrasound to check on his liver. There is a certain level, bilirubin, that was a little high on his last test and Dr. Gee wanted to check it out. A GI doctor told us that this is most likely proteins and blood leftover from when they put the central line in yesterday and took out the lines in his belly. Also, he has had many blood transfusions so it will take him time to break all that down. All in all, the Dr. is not immediately concerned but Riley will be tested bi-weekly just to follow up on his levels.
At lunch time, Riley had an Eco done on his heart. We were actually standing behind the tech while she did this, but are obviously not doctors so I had no idea what to look for, I just knew that his little heart was beating. Later tonight, we learned that the anatomy of his heart is all there and it is working well. He does have pulmonary hypertension, but they are watching it closely and will continue to monitor it but overall the heart looks great.
The best thing to happen today was we got to make eye contact with Riley! Our last visit of the day, he opened up his little left eye and looked around at his mommy and daddy who are so proud of him. I started crying almost immediately. To look into his eye and know that he's mine is an awesome feeling. To see him move his eye from side to side looking at Craig and I, his parents, really made me feel like we were a family. Another small victory achieved!
I will leave you with this scripture: 1 Peter 4:8-11 "8 Be alert and of sober mind. Your enemy the devil prowls around like a roaring lion looking for someone to devour. 9 Resist him, standing firm in the faith, because you know that the family of believers throughout the world is undergoing the same kind of sufferings.
10 And the God of all grace, who called you to his eternal glory in Christ, after you have suffered a little while, will himself restore you and make you strong, firm and steadfast. 11 To him be the power for ever and ever. Amen."
Friday, January 20, 2012
Another great day
We started the day off with a phone call to the nurse. You can call pretty much call 24/7 and talk directly to the nurse that is taking care of Riley that day. This is so nice and convenient. Everyone in the niccu is so caring and will do anything to help Riley and us. The phone call was positive with good reports on his breathing as well as urine output.
The urine is important because when Riley was born he was very swollen due to nonimmune hydrops. This caused him to retain way too much fluid, but as time passes on, the fluid is being released and Riley is much less swollen. Normally, you would want the baby to plump up, but as I've said before, Riley is special and God has chosen a different path for him.
We were amazed again at how his features are becoming more and more visible. His hands look awesome and the pads of his feet are getting all wrinkly. When we visited tonight, my mom mentioned you could now make out his wrists and ankles. His perfect body is being revealed before our eyes. Praise God!
He had a surgical procedure that went well today, they put in a central line to help him receive his meds and nutrition. This will replace most of the lines that were running through his belly button. We gave permission for the surgery around 1 pm and were told he would be in surgery sometime after 2:30 pm. Craig and I ate lunch and visited with Grandma and Grandpa Branham during this time. I love to see my grandparents with my son. I know they love him so much and are proud of him like we are. Craig and I were in the niccu waiting room for awhile and I was reclining in one of their nice chairs. My body wanted me to go to sleep so bad, I was nodding off and waking up what seemed like every minute waiting for a report. I'm sure if other people were in there that would have been a funny sight to see. It was such a relief when the doctor gave us the good news, Dr. Bloss is such a blessing. He said Riley is a little trooper and calls him his little buddy. He gives us great comfort.
The most exciting new thing today was watching him move! He moved his little hands and feet, and later on tonight we even saw his eyes and mouth moving. Daddy was tickling his feet and Riley was responding. Gigi (my mom) gave him a leg massage and he loved it. He was moving his little feets around while she was doing it. His left eye was just slightly open, I can't wait until we can make eye contact and he can finally see who has loved him so much from the moment I saw the two pink lines. I know that moment is rapidly approaching as I also know that many other victories are on the horizon. I praise God for all that he is doing and for all that will be done.
God can do anything, if you are struggling with something or have doubts in your life, please take a moment to ask God to help you deal with the obstacle. God can and will help you if you believe.
Matthew 17:20 He replied, "Because you have so little faith. Truly I tell you, if you have faith as small as a mustard seed, you can say to the mountain, 'Move from here to there,' and it will move. Nothing will be impossible for you."
The urine is important because when Riley was born he was very swollen due to nonimmune hydrops. This caused him to retain way too much fluid, but as time passes on, the fluid is being released and Riley is much less swollen. Normally, you would want the baby to plump up, but as I've said before, Riley is special and God has chosen a different path for him.
We were amazed again at how his features are becoming more and more visible. His hands look awesome and the pads of his feet are getting all wrinkly. When we visited tonight, my mom mentioned you could now make out his wrists and ankles. His perfect body is being revealed before our eyes. Praise God!
He had a surgical procedure that went well today, they put in a central line to help him receive his meds and nutrition. This will replace most of the lines that were running through his belly button. We gave permission for the surgery around 1 pm and were told he would be in surgery sometime after 2:30 pm. Craig and I ate lunch and visited with Grandma and Grandpa Branham during this time. I love to see my grandparents with my son. I know they love him so much and are proud of him like we are. Craig and I were in the niccu waiting room for awhile and I was reclining in one of their nice chairs. My body wanted me to go to sleep so bad, I was nodding off and waking up what seemed like every minute waiting for a report. I'm sure if other people were in there that would have been a funny sight to see. It was such a relief when the doctor gave us the good news, Dr. Bloss is such a blessing. He said Riley is a little trooper and calls him his little buddy. He gives us great comfort.
The most exciting new thing today was watching him move! He moved his little hands and feet, and later on tonight we even saw his eyes and mouth moving. Daddy was tickling his feet and Riley was responding. Gigi (my mom) gave him a leg massage and he loved it. He was moving his little feets around while she was doing it. His left eye was just slightly open, I can't wait until we can make eye contact and he can finally see who has loved him so much from the moment I saw the two pink lines. I know that moment is rapidly approaching as I also know that many other victories are on the horizon. I praise God for all that he is doing and for all that will be done.
God can do anything, if you are struggling with something or have doubts in your life, please take a moment to ask God to help you deal with the obstacle. God can and will help you if you believe.
Matthew 17:20 He replied, "Because you have so little faith. Truly I tell you, if you have faith as small as a mustard seed, you can say to the mountain, 'Move from here to there,' and it will move. Nothing will be impossible for you."
Thursday, January 19, 2012
Journal Entry 1/18/12
I ended today with some emotional difficulties. I think the exhaustion has set in and I need me some shut eye. Craig helped me recover as he does always if I have a bad moment. He is my rock and was, Praise God, made for me. I could write for days on how wonderful he has been this past week, maybe I'll start an "I have the best husband in the world" blog too! Wonder if someone mistakenly has already started that one? I bet my blog would beat hers! No words could ever express how thankful I am Craig is my husband and the father of my child. He is amazing. I just realized that many of you are going to be surprised at how mushy I'm getting...I'm telling you that God is working inside me!
Riley had more little miracles today. Dr. Gee did an assessment of him while I was present and his words were "Oh Golly, wow". After his assessment he decided to take Riley off his paralytic to see if moving around some will assist in pumping the blood through his body. Our son continues to amaze people and will do so the rest of his long life.
Craig and I got to change his diaper today which is so much fun. I know what you're thinking, you won't be saying that later on, but you know what? I believe I will. Nanny and Papa came to visit and spent some time with their great-grandson today. It's great to see Riley's effects on those who come to visit. He is our miracle baby. God is in control.
Matthew 21:22 "If you believe, you will receive whatever you ask for in prayer".
Riley had more little miracles today. Dr. Gee did an assessment of him while I was present and his words were "Oh Golly, wow". After his assessment he decided to take Riley off his paralytic to see if moving around some will assist in pumping the blood through his body. Our son continues to amaze people and will do so the rest of his long life.
Craig and I got to change his diaper today which is so much fun. I know what you're thinking, you won't be saying that later on, but you know what? I believe I will. Nanny and Papa came to visit and spent some time with their great-grandson today. It's great to see Riley's effects on those who come to visit. He is our miracle baby. God is in control.
Matthew 21:22 "If you believe, you will receive whatever you ask for in prayer".
Journal Entry 1/17/12
Today we got to spend lots of time with Riley. I was able to change his diaper and take his temperature twice. This was a really good bonding moment for us. I LOVE taking care of my son. Who knew that I would be thanking God for a simple task like changing Riley's diaper? God knew. But that is what it takes, to always thank and praise God for all things happening for us.
Riley has made improvements with his breathing. He was taken off the oscillator and put on a coventional ventilator. He has been on the ventilator for more than 12 hours and our last report from the nurse was positive. We pray that God will fill his little body and move through his organs. They were also able to lower is oxygen levels, which means that he needs less assistance to maintain oxygen in his blood. His urine output continues to increase which is helping his swelling reduce. You can now see more definition in his palms and pads of his feet.
We miss him when we are away but we are very close as we are staying in a hotel. I would like to thank Craig's company for putting us up in a hotel, this is a wonderful blessing. We can be at the hospital in 5 minutes if needed. I take back all the bad things I've said about Craig's job...well almost. ;)
Today was exciting and tomorrow will be great. Praise God for all Riley's improvements!!!
Riley has made improvements with his breathing. He was taken off the oscillator and put on a coventional ventilator. He has been on the ventilator for more than 12 hours and our last report from the nurse was positive. We pray that God will fill his little body and move through his organs. They were also able to lower is oxygen levels, which means that he needs less assistance to maintain oxygen in his blood. His urine output continues to increase which is helping his swelling reduce. You can now see more definition in his palms and pads of his feet.
We miss him when we are away but we are very close as we are staying in a hotel. I would like to thank Craig's company for putting us up in a hotel, this is a wonderful blessing. We can be at the hospital in 5 minutes if needed. I take back all the bad things I've said about Craig's job...well almost. ;)
Today was exciting and tomorrow will be great. Praise God for all Riley's improvements!!!
Journal Entry 1/16/12
Before starting the blog, I kept a journal. This is the entry from 1/16. Enjoy.
Riley James Monteith was born on January 11, 2012. His early arrival was unexpected but a wonderful surprise. God has a different plan for Riley than most other children but we are trusting in Our Father that he knows best. We know that Riley will grow strong in his new home. As parents, Craig and I will be there for him always. We continually pray and believe that God's presence is surrounding Riley and running through his body and ours.
His special new home was very hard to see and comprehend at first for me, but as my wonderful husband has said many times, it is a miracle that these highly educated and gifted doctors and nurses can create an artificial womb for him so he can continue to develop. The first few moments with Riley for me were difficult, I wanted to apologize to him for not keeping him safe longer. Once I was able to touch is little hand, however, I could feel our connection and I know he knows I did everything I could. When Craig and I are both holding his hands, the power is amazing. I feel like we are one unit, with one spirit. It's the best feeling in the world.
God created Riley and brought him into this earth early for a reason. It is not for us to question or be angry that things did not go "by the book". God seems to be constantly changing the plans that I've tried to make in my life, so I'm done with that. God is in control at all times. He will lead our family down the path He has chosen for us. He led me to Craig which has been the best blessing I could ask for and now giving us Riley is the greatest gift ever. I am in awe of Riley as he fights for his life, he gives me courage and strength.
Riley James Monteith was born on January 11, 2012. His early arrival was unexpected but a wonderful surprise. God has a different plan for Riley than most other children but we are trusting in Our Father that he knows best. We know that Riley will grow strong in his new home. As parents, Craig and I will be there for him always. We continually pray and believe that God's presence is surrounding Riley and running through his body and ours.
His special new home was very hard to see and comprehend at first for me, but as my wonderful husband has said many times, it is a miracle that these highly educated and gifted doctors and nurses can create an artificial womb for him so he can continue to develop. The first few moments with Riley for me were difficult, I wanted to apologize to him for not keeping him safe longer. Once I was able to touch is little hand, however, I could feel our connection and I know he knows I did everything I could. When Craig and I are both holding his hands, the power is amazing. I feel like we are one unit, with one spirit. It's the best feeling in the world.
God created Riley and brought him into this earth early for a reason. It is not for us to question or be angry that things did not go "by the book". God seems to be constantly changing the plans that I've tried to make in my life, so I'm done with that. God is in control at all times. He will lead our family down the path He has chosen for us. He led me to Craig which has been the best blessing I could ask for and now giving us Riley is the greatest gift ever. I am in awe of Riley as he fights for his life, he gives me courage and strength.
Subscribe to:
Posts (Atom)