The last 10 days have felt like a tightrope walking exercise of sorts. Someone lurking around the house, seeing I was 1,500 over for an oil change, the internet going out, the fence nearly falling on one side, Riley's tube coming out TWICE, finances in the toilet (a deployment in the beginning stages will really do it). My doctor insists I'm depressed, Leea was up throwing up last night, every single night without fail Riley's pump malfunctions and I'm up with it, 7 appointments for Riley last week...and the list goes on.
I've told God I can't do it so many times over these last 10 days. I've told Port this can't be what God has for us, I'm done with deployment and it's hardly begun.
I try really hard to remain in a CONSTANT state of thankfulness, no matter how bad it seems at the time, no matter how hard it is to do. Truthfully, I have more blessings than I can even count. It blesses me that our kids see it too. When they pray before a meal and before bed, their prayers are forever long and getting longer. Each line starts with a "thank you Jesus for...".
It's God sense of humor I guess...what I've told Him I can't possibly do, is exactly what He's had me do. I had to put Riley's tube back in myself at 3 in the morning a few days ago. I cried and cried, doing it by flashlight, begging God to direct my hands and speak peace into me. I've burned tissue off her G-tube sight myself, praying that I didn't overdo it. I've taken cues from my husband when he's called that are hard to take, so hard to absorb. We speak in code and I must be careful to listen to every little detail so that I know what's happening with him.
After putting Rileys' tube back in myself I cried out to the Lord in anger. I was so mad that I had to do it, so mad that it's been one thing after another. So mad over a lot of things. He met me as He so faithfully does and reminded me to keep my focus. I literally looked up the the heavens and felt His peace. The events of a day are never what I think they might be, I am in a constant struggle not to be emotional and offended in my flesh but to see things from the persepective of Christ.
It's a tightrope really. I don't have time for the drama of life, to explain where I am today. I hardly have time to shower and can't remember what appointment is when despite my huge purse calender the size of a notebook. The Lord gives me peace as I need it and tells me to keep my focus. I walk the tightrope, keeping my head up, my eyes lifted to His face, keeping my balance and trying hard not to let the things of the world, the tactics of the enemy cause me to lose my balance, to wobble too much. As soon as my eyes are off of Him, I nearly fall. I can't fall because 3 sets of eyes, hearts and smiles depend on me. I am so careful of my time, making sure that what I do doesn't take my eyes off Him, that I'm not caught up in what I shouldn't be. I have to keep my focus.
I encourage you today, as the storms of life rage on, as the world pulls at us from every direction, to stay the course on your tightrope. Hold your arms out on both sides, let Him lead you. Keep your head up as not to look around at the distractions. Keep your eyes on Him and only Him. One step at a time, one wobble at a time, my eyes are lifted up and nothing else matters.
Friday, June 10, 2011
Tuesday, May 24, 2011
His Great Name
"My God, how can this be what you have for me?" I've asked that very question so many times over the last few months. I've pondered, tried to figure, understand, wrestled, panicked and fought it all.
I debated on sharing but I feel the Lord has led me to do so. Just 2 nights ago I woke from a sound sleep in total panic. I couldn't breath, speak, think or even pray. I stayed this way for near 2 hours while my husband prayed for me, loved me, walked with me, let me cry on his shoulder and tried to talk it all out with me. I know that panic does not come from the Lord, such anxiety that I can't move is not from him. He is a God of order, peace, strength.
In a matter of days, the reality of the wars going on overseas will hit all to close to home for my family yet again. "My God, how can this be what you have for us?"
Riley's tube feedings have now been increased to day feedings, longer night feedings and followed by the finding of a severe dairy allergy. 10 days on antibiotics have done nothing to control the raging infection at her G-tube site. For 2 weeks straight, we have managed 4 appointments a week. We have 3 all in one day, tomorrow, they come on the heels of 2 prior appointments this week. "My God, how can this be what you have for our girl? Will it ever get better? Can't you see I'm already stretched so far? How much more must our hearts break? What are you doing?"
My grandparents who disowned me long ago, still refuse to see their grandchildren, haven't seen them in nearly 5 yrs and have never seen Riley or have any contact with me at all, even in the midst of an incurable cancer that has struck their lives in such a tragic way, I still have no idea what I did. "My God, how can this be what you have for me? What did I do?"
Pain I thought I would never feel, a conversation I never thought I would have to have, happened indeed and has left a huge hole in my heart. "My God, how can this be what you have for me?"
Then I realized, it's all at the sound of His name. I don't have to resort to panic or anxiety. I don't have to understand or figure it out. I just have to call on His name. I just have to look up towards Him. I just have to choose to keep praising Him in the midst of this never ending heartache, this nightmare I am stuck in. I just have to choose to point others to Him as best as I can.
God has such funny ways at times. A box comes from a dear and very loved friend at the most perfect time. Yet another message on our FB telling us what an inspiration we are, how much we reflect Christ, how we said something or shared a verse and personal experience that made such an impact on someone else's life, how hearing Riley's story has given them a stronger walk, more to be thankful for. He so mercifully chooses to give me such amazing people who love us, to get us, who in such obedience to Him, show us how much we are cared and prayed for.
Just practice saying His name for yourself a few times....right now. Jesus, Jesus, Jesus, Jesus, Jesus. You are high and lifted up. Every fear has no place at the sound of your name.
He is it friends. He is all there is and all that we need. Lost are saved, find their way at the sound of your great name. All condemned feel so shame at the sound of your great name. The enemy, he has to leave at the sound of your great name.
Listen the words of this awesome song and sing of His name for yourself:)
I debated on sharing but I feel the Lord has led me to do so. Just 2 nights ago I woke from a sound sleep in total panic. I couldn't breath, speak, think or even pray. I stayed this way for near 2 hours while my husband prayed for me, loved me, walked with me, let me cry on his shoulder and tried to talk it all out with me. I know that panic does not come from the Lord, such anxiety that I can't move is not from him. He is a God of order, peace, strength.
In a matter of days, the reality of the wars going on overseas will hit all to close to home for my family yet again. "My God, how can this be what you have for us?"
Riley's tube feedings have now been increased to day feedings, longer night feedings and followed by the finding of a severe dairy allergy. 10 days on antibiotics have done nothing to control the raging infection at her G-tube site. For 2 weeks straight, we have managed 4 appointments a week. We have 3 all in one day, tomorrow, they come on the heels of 2 prior appointments this week. "My God, how can this be what you have for our girl? Will it ever get better? Can't you see I'm already stretched so far? How much more must our hearts break? What are you doing?"
My grandparents who disowned me long ago, still refuse to see their grandchildren, haven't seen them in nearly 5 yrs and have never seen Riley or have any contact with me at all, even in the midst of an incurable cancer that has struck their lives in such a tragic way, I still have no idea what I did. "My God, how can this be what you have for me? What did I do?"
Pain I thought I would never feel, a conversation I never thought I would have to have, happened indeed and has left a huge hole in my heart. "My God, how can this be what you have for me?"
Then I realized, it's all at the sound of His name. I don't have to resort to panic or anxiety. I don't have to understand or figure it out. I just have to call on His name. I just have to look up towards Him. I just have to choose to keep praising Him in the midst of this never ending heartache, this nightmare I am stuck in. I just have to choose to point others to Him as best as I can.
God has such funny ways at times. A box comes from a dear and very loved friend at the most perfect time. Yet another message on our FB telling us what an inspiration we are, how much we reflect Christ, how we said something or shared a verse and personal experience that made such an impact on someone else's life, how hearing Riley's story has given them a stronger walk, more to be thankful for. He so mercifully chooses to give me such amazing people who love us, to get us, who in such obedience to Him, show us how much we are cared and prayed for.
Just practice saying His name for yourself a few times....right now. Jesus, Jesus, Jesus, Jesus, Jesus. You are high and lifted up. Every fear has no place at the sound of your name.
He is it friends. He is all there is and all that we need. Lost are saved, find their way at the sound of your great name. All condemned feel so shame at the sound of your great name. The enemy, he has to leave at the sound of your great name.
Listen the words of this awesome song and sing of His name for yourself:)
Saturday, May 14, 2011
Q&A and Riley pics
So in the last week we've had tons and tons of questions about Riley, her care, how she is, what has to be done for her now ect. So, I decided to try and answer them all on our family blog! In searching the internet for pic's of feeding tubes ect., I found it really hard to find them....so we've decided also, to include some pic's of what goes on here....to inform others and give you an idea of what goes on in Riley's life now.
(this is the pump used for Riley's feedings on a stand. The formula bag is attached at the top of the pole, the tube comes from the bag, to the pump, to Riley's stomach. The pump runs all night from 9-5, giving Riley an all night feeding of 80z. 1 ounce runs per hour.)
(The bandages you see cover her 3 incisions made during surgery, marking where different tools were used to perform her surgery. The port you see, poking out of her stomach is the actual G-tube. Because surgery was only a week ago, she still has redness and a lot of tenderness. The G-tube opens with a small lid feature, allowing me to insert the feeding tube. The formula goes directly into her stomach thru this port.)
Riley can have whatever she will eat by mouth during the day. This is done to keep her from being dependent on the feeding tube, to encourage her oral eating and to help her poor mouth motor skills. If she gains some weight, eats enough calories during the day, we will only have to do night feedings. If she continues not to gain weight and thrive, we will have to incorporate day feedings as well.
Riley no longer sleeps in a bed, but a pack n' play now. This is done so that she is unable to get up in the night and move from her bed to ours. If she were to try this with the G-tube in, she could seriously hurt herself, detaching her stomach or worse. This way, she can't get out of bed while getting a feeding and ensuring her safety.
We have a special back pack that can be used for feedings on the go. It's great for her because she can be up playing or at an outing while still staying on her very strict feeding schedule.
I have to log every single food she eats, keeping a calorie count, making sure that she's getting the calories she needs and being sure that her formula dose she gets is exactly what her body needs.
She is tolerating the formula perfectly.
Leea and Carson pay little attention to the actual G-tube but understand well why Riley has it and what it does for her. We spent a lot of time talking to them before the surgery, reassuring them and educating them on what was happening. They are very careful with her but don't worry or get upset about the tube at all.
Riley will likely have the G-tube for 2 yrs.
I can cover the G-tube site with gauze when we go out to ensure her safety and to keep the site clean and protected from others.
She is not able to do things on her stomach because she could really harm herself here too, causing damage to the site.
She will see the surgeon in 2 weeks to have the stitches removed. Her recovery time is 6-8 weeks.
We are doing well, learning of this new life, of what Riley needs and how to do it. Port has been nothing short of amazing, helping and stepping in. We've been a real team with her. I'm slowly coming to terms with the G-tube, seeing the good it does and will continue to do for Riley. It's a very emotional journey.
The hardest part for me, has been to see and understand that some people aren't comfortable with Riley,that she will be treated differently by some, that people we love don't understand and clearly don't want to understand, so they stay away and are afraid to visit or be around her.This reality became just that during our hospital time with her. It is beyond difficult to accept that normal isn't what God has for our family or for Riley anymore. I'm slowly allowing Him to remove the desire for normal, and accepting with joy what He does have for us. After all, we're all works and I truly do love these days. I will take and love Riley for who she is, regardless of what tubes, procedures, therapies ect she has to endure. She is our miracle, our perfect gift from God to show us how much He loves us:)
(this is the pump used for Riley's feedings on a stand. The formula bag is attached at the top of the pole, the tube comes from the bag, to the pump, to Riley's stomach. The pump runs all night from 9-5, giving Riley an all night feeding of 80z. 1 ounce runs per hour.)
(The bandages you see cover her 3 incisions made during surgery, marking where different tools were used to perform her surgery. The port you see, poking out of her stomach is the actual G-tube. Because surgery was only a week ago, she still has redness and a lot of tenderness. The G-tube opens with a small lid feature, allowing me to insert the feeding tube. The formula goes directly into her stomach thru this port.)
Riley can have whatever she will eat by mouth during the day. This is done to keep her from being dependent on the feeding tube, to encourage her oral eating and to help her poor mouth motor skills. If she gains some weight, eats enough calories during the day, we will only have to do night feedings. If she continues not to gain weight and thrive, we will have to incorporate day feedings as well.
Riley no longer sleeps in a bed, but a pack n' play now. This is done so that she is unable to get up in the night and move from her bed to ours. If she were to try this with the G-tube in, she could seriously hurt herself, detaching her stomach or worse. This way, she can't get out of bed while getting a feeding and ensuring her safety.
We have a special back pack that can be used for feedings on the go. It's great for her because she can be up playing or at an outing while still staying on her very strict feeding schedule.
I have to log every single food she eats, keeping a calorie count, making sure that she's getting the calories she needs and being sure that her formula dose she gets is exactly what her body needs.
She is tolerating the formula perfectly.
Leea and Carson pay little attention to the actual G-tube but understand well why Riley has it and what it does for her. We spent a lot of time talking to them before the surgery, reassuring them and educating them on what was happening. They are very careful with her but don't worry or get upset about the tube at all.
Riley will likely have the G-tube for 2 yrs.
I can cover the G-tube site with gauze when we go out to ensure her safety and to keep the site clean and protected from others.
She is not able to do things on her stomach because she could really harm herself here too, causing damage to the site.
She will see the surgeon in 2 weeks to have the stitches removed. Her recovery time is 6-8 weeks.
We are doing well, learning of this new life, of what Riley needs and how to do it. Port has been nothing short of amazing, helping and stepping in. We've been a real team with her. I'm slowly coming to terms with the G-tube, seeing the good it does and will continue to do for Riley. It's a very emotional journey.
The hardest part for me, has been to see and understand that some people aren't comfortable with Riley,that she will be treated differently by some, that people we love don't understand and clearly don't want to understand, so they stay away and are afraid to visit or be around her.This reality became just that during our hospital time with her. It is beyond difficult to accept that normal isn't what God has for our family or for Riley anymore. I'm slowly allowing Him to remove the desire for normal, and accepting with joy what He does have for us. After all, we're all works and I truly do love these days. I will take and love Riley for who she is, regardless of what tubes, procedures, therapies ect she has to endure. She is our miracle, our perfect gift from God to show us how much He loves us:)
Sunday, May 8, 2011
48ish hours after surgery
I'm sitting in the hospital room unable to sleep and thinking that just maybe my thoughts are gathered enough to type them out.
We are 48ish hours out of the surgeries we have been waiting for, for a long time. Let me start from the day of: Surgery was at 8:30 because the doctor decided to take Riley back a bit early. Though Riley has had a few surgeries before, I never get used to handing my baby over for an operation of any degree. The surgeon, whom we met 2 wks prior looked at me and said, "It's ok. I will take care of her as though she was my own." I cried and handed Riley to Port, who would be with her in the operating room until she feel asleep from the anesthesia. The next 2 1/2 hours were a blur of text messages, phone calls, tears, fears, hand holding and desperate prayers. I wondered if we had made the right choice by fighting for these surgeries for so long. I was haunted and still am, that there is no turning back.
The nurse came to get us and take us to Riley after the surgery was over. Just as they woke Riley, she yanked the tube going to her lungs out and nearly got her IV out of her hand as well. We met another nurse who handed me Riley and ushered Port and I to 2 chairs in the PICU unit. I cried and tried my best to comfort Riley. She has always had such a hard time coming out of anesthesia and is so afraid when she wakes. Nurses were everywhere, untangling cords, taking down numbers, hooking her to oxygen, taking her temp ect. I asked to see her stomach. Port looked at me as to make sure and I nodded yes. The nurse lifted Riley's gown and showed me what there was to see. I fell apart and cried as I never had before. I begged for the surgeon to come out, take her back to the OR and remove the tube. I begged Port to have it taken out. I cried more and pleaded with Riley that one day she would understand the choice we had to make, that one day we would see the benefit from the G-tube but even I wasn't so sure. For now, it's a scary monster that has invaded the tummy of my beautiful baby.
In the 2 wks that we had to prepare for the surgery I looked all over the internet for pictures of a baby with a G-tube. I thought maybe if I knew what to expect, I could deal better, encourage Riley more and generally educate myself. While I didn't do much reading on feeding tubes, I knew a little but never was able to find pictures.
The surgeon came out, I kept my cool as best as I could and listened to his orders for Riley for the next 24 hrs. He assured us that the procedures had gone text book, she looked excellent and even told us of her bright recovery. He told me we would need to of course continue her asthma meds but that she no longer needed the reflux meds. "She's not refluxing anymore", he said. I have dreamed of hearing those words. For Riley, it's so much more than reflux. It's killing her lungs, bringing constant pain to her ears, preventing her from eating, literally torturing her tiny body. I knew it was a step in the right direction and that our fighting had been blessed with favor from the Lord.
The next 24+ hours were a blur. Many texts, calls, FB messages,dear friends, doctors and nurses filled our tiny hospital room. Lots of checking her sites, monitoring pain, morphine, trying to get her to respond to our voices and more desperation. I was desperate from a sign from God that we had made the right choice, though I knew we had. I watched her every moment, never leaving her bed side, waiting for her to wake, to show me a sign of pain or comfort. Being clueless in all of it left me feeling pretty anxious for anything and nothing that she would show.
She slept well the first night, heavily medicated. We opted for every dose of everything they would give her to keep her comfortable. We held her hands and cried over her as she slept. I would look to Port's eyes for reassurance and comfort. I begged God to send His peace.
The next afternoon we began to stretch out the morphine doses from every 2 hours to every 3. We sat her up in the bed when she would wake and supported her on pillows when she slept. I held her for hours in my arms taking comfort in every next breath, every squeeze of my finger she gave. She would look at me, look at those talking to her but remained expressionless. There was no emotion on her face at all, no hint of her comprehending even our voices for the first 2 days. It was the most heartbreaking ordeal I have ever been thru as a mother. A dear sister in Christ came to see us, and I knew it was safe to break down with her. We spent much time crying at Riley's bedside for what our child must endure, trying to find God's plan and purpose in it all.
I still don't understand it and I may never. Though many go through so much worse, seeing a tube coming from my child's stomach is the harshest thing to me. I don't understand why she hasn't been well, why it must be so hard for her. Her ordeals don't seem morally ok to me, they don't seem to fit for our beautiful girl. I hear others talk at times about not wanting to vaccinate their kids bc of shots, of allergy testing being so invasive, how anesthesia can be the worst, and I wish it were that simple for our girl. I guess it's been somewhat of a grieving time for Port and I. We've had a lot of time together that I'm so grateful for. We've had privacy but the love from others who have come to visit at the same time. I've asked God why many, many times. How is it that the world we live in is in constant war and babies have tubes coming from their bodies to perform what they own body can't, to sustain them? How can that be?
Most recently Riley began to sit on her own. She has stood twice for several minutes with our help. With this surgery, the internal organs go numb and so the recovery is long and slow...6-8 wks actually. She's smiling and saying mama and dada. She reaches for our hands each time a nurse or doctor enters the room. She has become alert enough at times to watch Elmo or watch the bubbles we blow float around her bed. She is happy to see Leea and Carson when they are here to visit and likes to look out her window. We've done slow wagon rides around the Peds ward, visited the playroom briefly, blown bubbles, played with a pinwheel, done puzzles and sang songs. I've seen tiny glimpses of our girl come back. She shows others her stomach when they enter the room as if to say, "Hey, look at me now. It's going to be ok, see what I've come thru and how strong I am."
Nichole
We are 48ish hours out of the surgeries we have been waiting for, for a long time. Let me start from the day of: Surgery was at 8:30 because the doctor decided to take Riley back a bit early. Though Riley has had a few surgeries before, I never get used to handing my baby over for an operation of any degree. The surgeon, whom we met 2 wks prior looked at me and said, "It's ok. I will take care of her as though she was my own." I cried and handed Riley to Port, who would be with her in the operating room until she feel asleep from the anesthesia. The next 2 1/2 hours were a blur of text messages, phone calls, tears, fears, hand holding and desperate prayers. I wondered if we had made the right choice by fighting for these surgeries for so long. I was haunted and still am, that there is no turning back.
The nurse came to get us and take us to Riley after the surgery was over. Just as they woke Riley, she yanked the tube going to her lungs out and nearly got her IV out of her hand as well. We met another nurse who handed me Riley and ushered Port and I to 2 chairs in the PICU unit. I cried and tried my best to comfort Riley. She has always had such a hard time coming out of anesthesia and is so afraid when she wakes. Nurses were everywhere, untangling cords, taking down numbers, hooking her to oxygen, taking her temp ect. I asked to see her stomach. Port looked at me as to make sure and I nodded yes. The nurse lifted Riley's gown and showed me what there was to see. I fell apart and cried as I never had before. I begged for the surgeon to come out, take her back to the OR and remove the tube. I begged Port to have it taken out. I cried more and pleaded with Riley that one day she would understand the choice we had to make, that one day we would see the benefit from the G-tube but even I wasn't so sure. For now, it's a scary monster that has invaded the tummy of my beautiful baby.
In the 2 wks that we had to prepare for the surgery I looked all over the internet for pictures of a baby with a G-tube. I thought maybe if I knew what to expect, I could deal better, encourage Riley more and generally educate myself. While I didn't do much reading on feeding tubes, I knew a little but never was able to find pictures.
The surgeon came out, I kept my cool as best as I could and listened to his orders for Riley for the next 24 hrs. He assured us that the procedures had gone text book, she looked excellent and even told us of her bright recovery. He told me we would need to of course continue her asthma meds but that she no longer needed the reflux meds. "She's not refluxing anymore", he said. I have dreamed of hearing those words. For Riley, it's so much more than reflux. It's killing her lungs, bringing constant pain to her ears, preventing her from eating, literally torturing her tiny body. I knew it was a step in the right direction and that our fighting had been blessed with favor from the Lord.
The next 24+ hours were a blur. Many texts, calls, FB messages,dear friends, doctors and nurses filled our tiny hospital room. Lots of checking her sites, monitoring pain, morphine, trying to get her to respond to our voices and more desperation. I was desperate from a sign from God that we had made the right choice, though I knew we had. I watched her every moment, never leaving her bed side, waiting for her to wake, to show me a sign of pain or comfort. Being clueless in all of it left me feeling pretty anxious for anything and nothing that she would show.
She slept well the first night, heavily medicated. We opted for every dose of everything they would give her to keep her comfortable. We held her hands and cried over her as she slept. I would look to Port's eyes for reassurance and comfort. I begged God to send His peace.
The next afternoon we began to stretch out the morphine doses from every 2 hours to every 3. We sat her up in the bed when she would wake and supported her on pillows when she slept. I held her for hours in my arms taking comfort in every next breath, every squeeze of my finger she gave. She would look at me, look at those talking to her but remained expressionless. There was no emotion on her face at all, no hint of her comprehending even our voices for the first 2 days. It was the most heartbreaking ordeal I have ever been thru as a mother. A dear sister in Christ came to see us, and I knew it was safe to break down with her. We spent much time crying at Riley's bedside for what our child must endure, trying to find God's plan and purpose in it all.
I still don't understand it and I may never. Though many go through so much worse, seeing a tube coming from my child's stomach is the harshest thing to me. I don't understand why she hasn't been well, why it must be so hard for her. Her ordeals don't seem morally ok to me, they don't seem to fit for our beautiful girl. I hear others talk at times about not wanting to vaccinate their kids bc of shots, of allergy testing being so invasive, how anesthesia can be the worst, and I wish it were that simple for our girl. I guess it's been somewhat of a grieving time for Port and I. We've had a lot of time together that I'm so grateful for. We've had privacy but the love from others who have come to visit at the same time. I've asked God why many, many times. How is it that the world we live in is in constant war and babies have tubes coming from their bodies to perform what they own body can't, to sustain them? How can that be?
Most recently Riley began to sit on her own. She has stood twice for several minutes with our help. With this surgery, the internal organs go numb and so the recovery is long and slow...6-8 wks actually. She's smiling and saying mama and dada. She reaches for our hands each time a nurse or doctor enters the room. She has become alert enough at times to watch Elmo or watch the bubbles we blow float around her bed. She is happy to see Leea and Carson when they are here to visit and likes to look out her window. We've done slow wagon rides around the Peds ward, visited the playroom briefly, blown bubbles, played with a pinwheel, done puzzles and sang songs. I've seen tiny glimpses of our girl come back. She shows others her stomach when they enter the room as if to say, "Hey, look at me now. It's going to be ok, see what I've come thru and how strong I am."
Nichole
Thursday, April 21, 2011
Riley's Road: g-tube and reflux surgeries
Lately, I can't remember what I've blogged about and what I haven't. I'm tired to put it mildly and life is about to get much more hectic for us.
2 weeks ago we saw a feeding therapist, who is amazing, compassionate, can finish my sentences, and seems to get it better than any other doctor/therapist thus far. After an hour and a half of meeting with her and 3 of her other respected colleges, she shared with me that Riley must have a feeding tube. She feels Riley is a huge red flag for a severe dairy allergy. Dairy, because on most days, it's the only food group Riley actually consumes anything of. Riley has very poor mouth function, meaning that she is not able to properly chew and swallow her food. The severe reflux (that most doctors haven't felt is severe enough) has eaten some enamel off of Riley's back teeth. If that isn't severe, I don't know what is. 55 acidic reflux episodes in 24 hrs seems pretty severe to me. Wait to grow out of it? You want me to WAIT??? I'm not the most patient of people to begin with, but what these "doctors" have failed to see is that in the process of waiting to see if she will grow out of the reflux, Riley is the one who suffers. She is the one who pays by constantly having reflux, aspirating to her lungs and ears.In the meantime, as we wait, doctors tell me it will take at least 6 months to get her lungs fully clean, strong and functioning after the reflux is gone. Thanks, but at this point, I decided to keep pushing for a doctor with warm blood running thru their veins, who could care a bit.
Because of the severity of the reflux, the severity of Riley's lung issues, she needs a g-tube, otherwise known as a feeding tube. We need to bypass her lungs, get nutrition into her tiny body and take her off dairy totally.
Several people who see Riley often have offered me their advice that they don't think a g-tube is the answer, it's too soon, she needs more time to grow, it's so drastic, there's no going back ect. Well in one respect, they are right. She isn't growing and that's the problem. Riley has gained less than 1 whole pound since January. What she is consuming is going up and down her poor throat a million times a day, coming all the way to the top of her throat and staying for as long as 3 minutes at a time, going into her lungs and to her ears. I have to find a way to get nutrition into her body, bypassing her lungs. I've got to find a way to help her grow, to feel better. I'm convinced that Riley doesn't know what it's like to feel good, to be full. She eats random bits of food, usually 2 bites 3-4 times a day. It's not enough to ward off the hunger pains she feels.
Truthfully though, it sucks. I can't believe we are having these talks with therapists...and why are the therapists the ones moving on her behalf and not the doctors???? I am so very saddened that there is no other way than to put a tube thru her abdomen, that I will have to tube feed her. On May 6th, there will be a tube used to feed my daughter. A tube. A tube.
During the same operation, the surgeon will perform the reflux surgery, attempting to correct the reflux issue. I'm told he can take up to half of her stomach to use for this operation. Half??!!
I wish I didn't know words like MRSA, g-tube, reflux surgery, PICC line, in home care nurses, leg braces, ear tubes, staff, therapies, mental disorders, high developmental delays, chronic....
I'm terrified of the the surgery. Terrified to put it mildly, again. I know it's what is needed. I know because the Lord spoke it to me months and months ago. I knew it was coming and have had a peace...until it has actually started to happen.
What if Riley hates me? What if I've done the surgeries and therapies and all else to her? What if I've caused her pain and being uncomfortable? What if I can't care for her properly? What if I can't keep homeschooling? What if I drown once my husband deploys AGAIN? What if people treat her harshly because she's different? What if people don't get us and our life? What if no one helps? There are a million what if's that I just keep trying to fight.
Please pray for me, for my focus, for my peace. Please continue your prayers for my family. We leave this weekend for 10 days to the East Coast to visit family. Traveling is so SO hard with Riley. Please pray for my husband. It hurts his heart in ways that hurt mine, that his baby girl must go thru so much. Please pray for our marriage, that is becomes stronger in what tears most. Please pray for our big kids. They try hard to understand and show love and compassion but I fear they are drowning in appointments, in Riley's care and I don't want to miss them, to overlook them. Please pray for our Riley girl. There is so much she doesn't understand and I know she's tired of appointments and testing. Please pray she knows how loved she is, how perfect in Him that she is, how it's going to be ok...one way or another.
Nichole
2 weeks ago we saw a feeding therapist, who is amazing, compassionate, can finish my sentences, and seems to get it better than any other doctor/therapist thus far. After an hour and a half of meeting with her and 3 of her other respected colleges, she shared with me that Riley must have a feeding tube. She feels Riley is a huge red flag for a severe dairy allergy. Dairy, because on most days, it's the only food group Riley actually consumes anything of. Riley has very poor mouth function, meaning that she is not able to properly chew and swallow her food. The severe reflux (that most doctors haven't felt is severe enough) has eaten some enamel off of Riley's back teeth. If that isn't severe, I don't know what is. 55 acidic reflux episodes in 24 hrs seems pretty severe to me. Wait to grow out of it? You want me to WAIT??? I'm not the most patient of people to begin with, but what these "doctors" have failed to see is that in the process of waiting to see if she will grow out of the reflux, Riley is the one who suffers. She is the one who pays by constantly having reflux, aspirating to her lungs and ears.In the meantime, as we wait, doctors tell me it will take at least 6 months to get her lungs fully clean, strong and functioning after the reflux is gone. Thanks, but at this point, I decided to keep pushing for a doctor with warm blood running thru their veins, who could care a bit.
Because of the severity of the reflux, the severity of Riley's lung issues, she needs a g-tube, otherwise known as a feeding tube. We need to bypass her lungs, get nutrition into her tiny body and take her off dairy totally.
Several people who see Riley often have offered me their advice that they don't think a g-tube is the answer, it's too soon, she needs more time to grow, it's so drastic, there's no going back ect. Well in one respect, they are right. She isn't growing and that's the problem. Riley has gained less than 1 whole pound since January. What she is consuming is going up and down her poor throat a million times a day, coming all the way to the top of her throat and staying for as long as 3 minutes at a time, going into her lungs and to her ears. I have to find a way to get nutrition into her body, bypassing her lungs. I've got to find a way to help her grow, to feel better. I'm convinced that Riley doesn't know what it's like to feel good, to be full. She eats random bits of food, usually 2 bites 3-4 times a day. It's not enough to ward off the hunger pains she feels.
Truthfully though, it sucks. I can't believe we are having these talks with therapists...and why are the therapists the ones moving on her behalf and not the doctors???? I am so very saddened that there is no other way than to put a tube thru her abdomen, that I will have to tube feed her. On May 6th, there will be a tube used to feed my daughter. A tube. A tube.
During the same operation, the surgeon will perform the reflux surgery, attempting to correct the reflux issue. I'm told he can take up to half of her stomach to use for this operation. Half??!!
I wish I didn't know words like MRSA, g-tube, reflux surgery, PICC line, in home care nurses, leg braces, ear tubes, staff, therapies, mental disorders, high developmental delays, chronic....
I'm terrified of the the surgery. Terrified to put it mildly, again. I know it's what is needed. I know because the Lord spoke it to me months and months ago. I knew it was coming and have had a peace...until it has actually started to happen.
What if Riley hates me? What if I've done the surgeries and therapies and all else to her? What if I've caused her pain and being uncomfortable? What if I can't care for her properly? What if I can't keep homeschooling? What if I drown once my husband deploys AGAIN? What if people treat her harshly because she's different? What if people don't get us and our life? What if no one helps? There are a million what if's that I just keep trying to fight.
Please pray for me, for my focus, for my peace. Please continue your prayers for my family. We leave this weekend for 10 days to the East Coast to visit family. Traveling is so SO hard with Riley. Please pray for my husband. It hurts his heart in ways that hurt mine, that his baby girl must go thru so much. Please pray for our marriage, that is becomes stronger in what tears most. Please pray for our big kids. They try hard to understand and show love and compassion but I fear they are drowning in appointments, in Riley's care and I don't want to miss them, to overlook them. Please pray for our Riley girl. There is so much she doesn't understand and I know she's tired of appointments and testing. Please pray she knows how loved she is, how perfect in Him that she is, how it's going to be ok...one way or another.
Nichole
Tuesday, April 19, 2011
Faith Choices
Bitter, angry, disgusted....my feelings for doctors. They have come along side of me so many times, offering to help, promising solutions only to let me down, drop our case, and just disappear.
I cry. I cry while driving, while in the shower, while folding laundry, while cooking dinner, while lying in bed waiting for the next day to come. I am angry, I am so mad and I cry. I cry for our girl. It doesn't seem fair that she would go thru so much, that her road be so long.
I stress. I stress over each appointment. I stress over the latest report, over the deployment that will be taking my husband far from home when I need him so badly. I stress over surgeries, over many ?'s from loved ones, I stress over every aspect of life for our life isn't what I thought it would be....it's no where near it.
My doctor says I'm depressed and handed me a bottle of anti-depressants faster than I could say, "no thanks doc." I don't agree.
I say that I have the freedom to approach the throne of Christ Jesus with ALL things (Hebrews 4:16). That means, all my emotions, all my fears, all my worries and what if's. That means I can ask Him questions I don't have the answers too, I can talk to Him of the most intricate details involving Riley's care. I can bring it ALL to Him. His shoulders can bear the load far better than mine. He's not worried of the latest report, of the surgeries coming, of the deployment. Nothing shocks Him off the throne so why do I then carry it on MY shoulders instead of allowing Jesus to take it on HIS?
I'm reading this amazing book called Faith In The Night Seasons, by Nancy Missler. The book challenges and encourages you in the midst of your "night season" to see Jesus at real work in your life, to learn how to handle the hard stuff we deal with in life while being able to truly praise and glorify the Father. Nancy Missler, reminds you that everything in life comes from the Father, including the pain and hardships as our lives are God- filtered. Every time I pick it up, I'm so thankful to my dear friend who suggested I read it as she placed it in my hands:)
I'm reading now about "faith choices" and "emotional choices" and how I have a choice in which I will choose to act upon. Faith choices mean that in the midst of the yuck, in my tears and fears, I'm choosing to trust Christ and His plan for my life (Jeremiah 29:11). I recognize that Riley is His and that He has gifted her to me, trusting me with her care. He has a mighty plan for Riley's life and has planned for every event thus far. I can trust Him, I can choose to turn my eyes to Him, I can put my faith and confidence in Him, rather than in doctors. I can choose to do my best with her care, giving my all to glorify Him by serving my family.
Emotional choices are what we feel as human and any action that involves our flesh. When I stress, freak out, melt down, fall apart, throw my hands in the air....it's all emotional choices. None of these glorify the Father, none show my faith in Him to others but rather allow me a pity party.
I encourage you today not to be ashamed of the emotions you feel but to really ask yourself in the moment what kind of a choice you are making. Are you looking to the Father, making a faith choice? Are you choosing to give Him glory, thankful that He is in control(James 1:1-2) Are you praising Him, looking for the positive in it all? Or....are you lashing out and giving up? Are you giving way to fear and allowing the enemy a foothold? Are you choosing to be idle, not serving, not giving of your time and resources to help others? Are you shaken by your circumstances and unable to see clearly (Psalms 16:8)?
We have a choice...one moment at a time, one day at a time to make a faith choice. We can choose not to give in, but to persevere in running the good race (Hebrews 12:1, James 1:3). I encourage you today to make every choice you make, a faith choice:)
I cry. I cry while driving, while in the shower, while folding laundry, while cooking dinner, while lying in bed waiting for the next day to come. I am angry, I am so mad and I cry. I cry for our girl. It doesn't seem fair that she would go thru so much, that her road be so long.
I stress. I stress over each appointment. I stress over the latest report, over the deployment that will be taking my husband far from home when I need him so badly. I stress over surgeries, over many ?'s from loved ones, I stress over every aspect of life for our life isn't what I thought it would be....it's no where near it.
My doctor says I'm depressed and handed me a bottle of anti-depressants faster than I could say, "no thanks doc." I don't agree.
I say that I have the freedom to approach the throne of Christ Jesus with ALL things (Hebrews 4:16). That means, all my emotions, all my fears, all my worries and what if's. That means I can ask Him questions I don't have the answers too, I can talk to Him of the most intricate details involving Riley's care. I can bring it ALL to Him. His shoulders can bear the load far better than mine. He's not worried of the latest report, of the surgeries coming, of the deployment. Nothing shocks Him off the throne so why do I then carry it on MY shoulders instead of allowing Jesus to take it on HIS?
I'm reading this amazing book called Faith In The Night Seasons, by Nancy Missler. The book challenges and encourages you in the midst of your "night season" to see Jesus at real work in your life, to learn how to handle the hard stuff we deal with in life while being able to truly praise and glorify the Father. Nancy Missler, reminds you that everything in life comes from the Father, including the pain and hardships as our lives are God- filtered. Every time I pick it up, I'm so thankful to my dear friend who suggested I read it as she placed it in my hands:)
I'm reading now about "faith choices" and "emotional choices" and how I have a choice in which I will choose to act upon. Faith choices mean that in the midst of the yuck, in my tears and fears, I'm choosing to trust Christ and His plan for my life (Jeremiah 29:11). I recognize that Riley is His and that He has gifted her to me, trusting me with her care. He has a mighty plan for Riley's life and has planned for every event thus far. I can trust Him, I can choose to turn my eyes to Him, I can put my faith and confidence in Him, rather than in doctors. I can choose to do my best with her care, giving my all to glorify Him by serving my family.
Emotional choices are what we feel as human and any action that involves our flesh. When I stress, freak out, melt down, fall apart, throw my hands in the air....it's all emotional choices. None of these glorify the Father, none show my faith in Him to others but rather allow me a pity party.
I encourage you today not to be ashamed of the emotions you feel but to really ask yourself in the moment what kind of a choice you are making. Are you looking to the Father, making a faith choice? Are you choosing to give Him glory, thankful that He is in control(James 1:1-2) Are you praising Him, looking for the positive in it all? Or....are you lashing out and giving up? Are you giving way to fear and allowing the enemy a foothold? Are you choosing to be idle, not serving, not giving of your time and resources to help others? Are you shaken by your circumstances and unable to see clearly (Psalms 16:8)?
We have a choice...one moment at a time, one day at a time to make a faith choice. We can choose not to give in, but to persevere in running the good race (Hebrews 12:1, James 1:3). I encourage you today to make every choice you make, a faith choice:)
Wednesday, April 6, 2011
Riley's Road: The Unspoken
I will first ask your forgiveness and understanding for what I write today. In a great attempt to protect the privacy of our Riley girl, I will refrain from being awfully specific on certain things. I pray you can understand and continue to just love her, just love her.
For the first time ever, we gathered enough sweat in the suctions yesterday to perform the CF test. I think it was daddy's touch....he held her and loved her for the entire very long process and it worked:) Thankfully, he was able to come to this appointment. We will know on Friday what the results are. I'm praying that lab techs and doctors at Denver Children's and National Jewish will have clear results and be firm in whatever the outcome is.
Riley has a feeding eval very early next week and speech, OT and PT evals the following week. After all evals are completed we will know what types of therapies (the intensity of them) and how often she will need them. As of now we are looking at 6 different therapies at least twice a week. I have no idea how it will work and am even more unclear as to how it will work once the deployment has begun. I truly believe her doc's are working hard to help. We are still waiting on her genetics appointment as well as her neurological appointments and the reflux/voice box surgery to be scheduled.
We are dealing with some neurological issues, heavy ones. The behavioral health therapists really heard us yesterday, she understood better than any doctor thus far, she really put some pieces together for us. Sadly, her news makes such sense to us. Our hearts are broken, so broken today. Why did I pray for answers? Would I be better not knowing? It seems I do ok for a few days and then something more awful comes about. The appointment with the behavioral health therapist was one I debated on canceling for a week but really felt the Lord speaking to me to keep it, that there would be connections made, and there was. There are no true tests, but rather watching Riley and knowing her, being an expert in this field, a fellow believer and we finally have some answers....yet there are many more we need.
Our girl is so much more than an opinion, a diagnosis, an appointment. She is a child, a very loved child, a child who has been thru so much in her 2 yrs of life. A child of strength who radiates the love of Christ. She is a picture of perseverance, of determination.
Please continue your prayers for her, for us. As I usually say, we need them more than ever.
Subscribe to:
Posts (Atom)