First have to apologize for not posting for who knows how long now. What I do know is it is November almost December and Faith is now 9 months. A month from now would mark the time I found out my baby would most likely not be with me. Well she is and believe me I count myself lucky. I also find myself seeing her healthy as any other baby until I am smacked with reality when she starts getting sick and I hear of all the other babies suffering with this awful disease. My sweet Angel has pulled through so much, touched so many, and made me believe in miracles.
With that though I have been hit with the pain of loss. I have been blessed to be part of an amazing group of moms that are dealing with kids, and babies with this terrible condition. At times seems so unfair but I have to constantly step back and realize it is out of my control. As I sit here rocking her to sleep, since she is fighting it, I see how fragile she is. The last two days she hasn't been herself and really fussy. It is always a fear that it is an infection or something that could end us back in the hospital. Colds take on a whole new meaning and fevers are an auto anxiety attack. A balance of Faith and giving it back to god that it is not my call on what happens.
With that said I was given the devastating news yesterday that Harriet 'Ho Ho' had passed away. She was to me and the kids a part of our family. Tristan would constantly ameris away to go see her or if I needed a laugh her door was always open. We were walking to see her when we were told she had passed 2 weeks ago. I've been a mess since that moment and knowing 2 weeks prior tristan had asked to go see her and I told him we would later. Well later has passed along with the option to see her again. That pain of loss is hard, watching your children feel that pain is worse, but also knowing moms out there that have recently lost their babies to this awful disease is the worst.
So with the month of thankfulness almost done (which should be all year) I counting my blessings to have my baby here and not mourning her loss.
As a family we will walk through this difficult time together
Tuesday, November 29, 2011
Wednesday, July 20, 2011
Our journey home part 2
As we began to drive we weren't out of the parking lot and the anxiety hit. I know I'd been wanting to be home but actually doing it set in so much anxiety a horse size pill couldn't calm me. I began to call my family and no one answered but Bev. Its hard to be so excited to tell everyone when no one is there to tell. The thing is, is I didn't tell anyone or even pack till the discharge papers were being signed. She had made me have a different plan then I wanted most of the time and this time I couldn't get my hopes up till I knew for real. I had spent another night of no sleep next to her bed keeping her from gaging and puking since dan misunderstood about when and how we were going to switch time with her. So at 6 I went to rest for an hour then the mad sweaty rush of packing and signing my life away began (or it seemed, since I have never signed so many forms in my life.) As we drove down the freeway I was amazed how everything had changed, see I hadn't been outside really for three weeks. I then felt how long I really was gone.
When we pulled in the driveway there was the overwhelming emotion that finally hit me that I was home. Three months and five days had passed since I had slept in my own home, put my kids to bed in their beds, and fell asleep all there. It was that way most the night after the stress of trying to unpack enough to find her dialysis supplies and our bed. I wish I had taken a picture of all the stuff piled on our bed and in the living room but didn't think about it...imagine that. So to say the least I worked morning to night for a week straight just to get my house in some order.
That first week was long, hard, and very exhausting. I got no sleep and the stress of getting kids off to school every morning with her still hooked to the machine and her feeds were another feat that I couldn't get a handle on. Along with the stress of doing all I could to keep her stable and doing good so I wouldn't have to go back was probably the hardest. Then on wednesday night, which she was going to her regular appointment anyhow, was a night I will never forget.
I hooked her up as normal after doing all her vitals and watched her initial drain. As it started to pull the line began to fill with air and I panicked. I instantly stopped it and called Baxter, the company that makes the cycler. They said to set up a new set...which sucks cause another 20 minutes is wasted, and to call the dialysis nurse and let her know. I called and talked to Melinda in hope it was just the machine, well we soon found out it wasn't. After three hours of trying to get her to drain and fill I disconnected her and turned off her drip feeds. This was the first time she didn't have continuous feeds while she slept so she woke up I can't even count how many times dying, or what she thought, of hunger. Trying to feed an overly hungry overly exhausted baby when you can't even spell your name is quite a sight is all I can say. They wanted me up there as soon as I could so got the kids on the bus, grabbed a quad shot coffee and started my drive to Seattle. When I first started going I didn't think about it but there is alot of things to manage with her on a drive like that...oxygen, feeds, and keeping her from throwing up (which at that time she would every morning especially when put in a car seat).
The day started with inserting tpa in her catheter, then blood draws, meeting with doctors, training, pharmacy(since they finally listened to me that she needed heprin in her dialisate) then 8 hours later I was on the road home. About 5 minutes in traffic she began to freak out. Not much I could do besides try to hold her pacifier, rock her seat, talk to her, oh and try not to crash. After she screamed so hard she could hardly breathe and so sweaty she felt like I just bathed her, she passed out. It was then it took all of me to stay calm and not run every one off the road trying to get home, which took 4 hours because of traffic.
After that appointment I NEVER go by myself and she has not had a clot again.
Life now is somewhat more manageable but still can't really get much done since, well I'll walk you through a normal day.
I'm awoken by Dan at 4am when he gets up too go to work and says by about 5. Then at 6am the nurse comes and walks me through what the night was like, which is usually...she slept, it alarmed a few times but she did good. Then it is off to adding one of her meds an hour to her feeds which will go for about 3 more hours. As she finishes that and her dialysis I sit with her and try to keep her happy, because she doesn't like being left alone. During this time too the kids wake up, I have to pump, and dogs need out. As end therapy shows on the screen I begin her cares, temp, blood pressure(which I hate since she has to sit still or it alarms), and as soon as her feeds are complete I scrub mask and glove up to disconnect her. Then its onto weighing, which she is putting on pounds like crazy just not enough length.
Once she is all done with all that and its recorded we either do out partial bath of her head neck and tummy, but every other is her complete bath and dressing change. So to say the least I'm lucky to get dressed before 11. Then half way through the day I give her a bolust feed with her sodium chloride and part of her AM sodium phos. In between getting what I can do top of feeding her and pumping for her night drips. We are so fortunate to have a nurse from 10-6am. So at about 6:30 we get all her dialysis supplies, insert heprin in the bags, set up cycler and do all her cares again. By that time I'm doing dinner at the same time so Dan usually connects her, and her 13 hours begin. During this time for her waiting for her feeds I feed her and then about 10 pm her night drips starts with her added medication and added calories and protein and she finally falls asleep. Then I'm off to filling the nurse in about her day and any changes, pump yet again, then to bed by about 11 and then it all starts over again.
Now don't get me wrong I do get extremely overwhelmed with all the things I need to do everyday for her plus trying to get things done or caught up, which leaves me to tears some days but I wouldn't trade her for the world. She has changed my life my families life and so many around me that I couldn't imagine it without her. She is my fighting Faith.
When we pulled in the driveway there was the overwhelming emotion that finally hit me that I was home. Three months and five days had passed since I had slept in my own home, put my kids to bed in their beds, and fell asleep all there. It was that way most the night after the stress of trying to unpack enough to find her dialysis supplies and our bed. I wish I had taken a picture of all the stuff piled on our bed and in the living room but didn't think about it...imagine that. So to say the least I worked morning to night for a week straight just to get my house in some order.
That first week was long, hard, and very exhausting. I got no sleep and the stress of getting kids off to school every morning with her still hooked to the machine and her feeds were another feat that I couldn't get a handle on. Along with the stress of doing all I could to keep her stable and doing good so I wouldn't have to go back was probably the hardest. Then on wednesday night, which she was going to her regular appointment anyhow, was a night I will never forget.
I hooked her up as normal after doing all her vitals and watched her initial drain. As it started to pull the line began to fill with air and I panicked. I instantly stopped it and called Baxter, the company that makes the cycler. They said to set up a new set...which sucks cause another 20 minutes is wasted, and to call the dialysis nurse and let her know. I called and talked to Melinda in hope it was just the machine, well we soon found out it wasn't. After three hours of trying to get her to drain and fill I disconnected her and turned off her drip feeds. This was the first time she didn't have continuous feeds while she slept so she woke up I can't even count how many times dying, or what she thought, of hunger. Trying to feed an overly hungry overly exhausted baby when you can't even spell your name is quite a sight is all I can say. They wanted me up there as soon as I could so got the kids on the bus, grabbed a quad shot coffee and started my drive to Seattle. When I first started going I didn't think about it but there is alot of things to manage with her on a drive like that...oxygen, feeds, and keeping her from throwing up (which at that time she would every morning especially when put in a car seat).
The day started with inserting tpa in her catheter, then blood draws, meeting with doctors, training, pharmacy(since they finally listened to me that she needed heprin in her dialisate) then 8 hours later I was on the road home. About 5 minutes in traffic she began to freak out. Not much I could do besides try to hold her pacifier, rock her seat, talk to her, oh and try not to crash. After she screamed so hard she could hardly breathe and so sweaty she felt like I just bathed her, she passed out. It was then it took all of me to stay calm and not run every one off the road trying to get home, which took 4 hours because of traffic.
After that appointment I NEVER go by myself and she has not had a clot again.
Life now is somewhat more manageable but still can't really get much done since, well I'll walk you through a normal day.
I'm awoken by Dan at 4am when he gets up too go to work and says by about 5. Then at 6am the nurse comes and walks me through what the night was like, which is usually...she slept, it alarmed a few times but she did good. Then it is off to adding one of her meds an hour to her feeds which will go for about 3 more hours. As she finishes that and her dialysis I sit with her and try to keep her happy, because she doesn't like being left alone. During this time too the kids wake up, I have to pump, and dogs need out. As end therapy shows on the screen I begin her cares, temp, blood pressure(which I hate since she has to sit still or it alarms), and as soon as her feeds are complete I scrub mask and glove up to disconnect her. Then its onto weighing, which she is putting on pounds like crazy just not enough length.
Once she is all done with all that and its recorded we either do out partial bath of her head neck and tummy, but every other is her complete bath and dressing change. So to say the least I'm lucky to get dressed before 11. Then half way through the day I give her a bolust feed with her sodium chloride and part of her AM sodium phos. In between getting what I can do top of feeding her and pumping for her night drips. We are so fortunate to have a nurse from 10-6am. So at about 6:30 we get all her dialysis supplies, insert heprin in the bags, set up cycler and do all her cares again. By that time I'm doing dinner at the same time so Dan usually connects her, and her 13 hours begin. During this time for her waiting for her feeds I feed her and then about 10 pm her night drips starts with her added medication and added calories and protein and she finally falls asleep. Then I'm off to filling the nurse in about her day and any changes, pump yet again, then to bed by about 11 and then it all starts over again.
Now don't get me wrong I do get extremely overwhelmed with all the things I need to do everyday for her plus trying to get things done or caught up, which leaves me to tears some days but I wouldn't trade her for the world. She has changed my life my families life and so many around me that I couldn't imagine it without her. She is my fighting Faith.
Friday, July 8, 2011
Our journey home part 1
Well I have to say having a chance to actually write things down has become quite a feat. We have now been home for almost seven weeks now! I have tried countless times to write about all the things that have happened since I last wrote and I can give a brief summary from what this tired mom can remember.
So a week prior to us FINALLY coming home we were transfered out of the nicu. Now we were going to be able to leave to the floor on tuesday but faith as always had another idea for that. That night her blood pressure dropped and as they were doing her rounds she woke up and spit up so I went to change her. And I can't believe what I saw. She had raised hive type spots all over her abdomine. It quickly spread all over her body and all you could see is red. At this point in time dan was home with the kids since my mom went in for surgery and so we had no one to get them to from school and all their appts. I called the nurse in hoping she had some answer for me and that is when the chaos began. Blood draws, eco test on her heart, ultrasound, xrays, and specialist visits. All the while I sat there watching her scream with no answer to it. By the end of the day the only answer I had was she was severely dehydrated and her blood volume was low in her heart which was making her levels drop. The rash was and still is unknown. That day she got to shots of saline water and by the next morning my happy baby was back. What they didn't tell me and I heard in rounds is that her heart was beginning to thicken. Basically because her lungs being so small it was making her heart work harder to oxygenate her body. So with any muscle working harder it gets bigger. Now its not to big of a deal if it doesn't continue but it is another thing we will have to monitor and keep an eye on.
Friday came and with that our move out of the nicu. I purposely didn't say anything to anyone, especially faith since I now knew she had her own agenda. Luckily dan was there for that since it was quite a shock. The room was such an upgrade with a tv, couch, and our own bathroom BUT the down fall was the lack of nursing. The main reason for going there first was to get used to doing it all on our own, and did we ever.
The thought was and was told that we would only be on the floor for a few days but that of course changed. I was put through the ringer of training and no sleep. See when she is on dialysis at night with her drip feeds was the only time she the up, but along with that if she threw up once her chance of coughing and throwing up was even higher. So I spent my nights in her room since the nurse would not hear her and the doctors were keeping us there for every little thing.
So I fought my butt off for nights on end with no sleep to show then what I am willing to do to get home, but it didn't work. That is when I broke down and got lost in all of it. All of the discharge planning, the equipment, the responsibilities, the what ifs. That its when I doubted myself and who I was as a mom...and too say the least it didn't last long.
For three days straight I lived in her room. One day I didn't even go to the bathroom our eat for 7 hours. Just to cram in all the info they should and could have done for 3 months. That is what they were going to keep me there for another week to do! Deaming me again of being incapable of taking care of her, even though I had been for months. It was like I was being bullied by the doctors. Dan wanted to pick us up wednesday, well wednesday came and went then they said maybe friday. When that changed and they said they wanted to wait till the following wednesday dan lost it and came to fight the battle I had been in for a week now. They also wanted to up her fill volume and up her hours and dextrose solution. All of which I questioned and didn't want happening, but again I wasn't being heard. But they heard Dan that's for sure! So sunday with chaos of packing three months worth of clothes, supplies, and a baby we were on our way home. Three months and four days later.
So a week prior to us FINALLY coming home we were transfered out of the nicu. Now we were going to be able to leave to the floor on tuesday but faith as always had another idea for that. That night her blood pressure dropped and as they were doing her rounds she woke up and spit up so I went to change her. And I can't believe what I saw. She had raised hive type spots all over her abdomine. It quickly spread all over her body and all you could see is red. At this point in time dan was home with the kids since my mom went in for surgery and so we had no one to get them to from school and all their appts. I called the nurse in hoping she had some answer for me and that is when the chaos began. Blood draws, eco test on her heart, ultrasound, xrays, and specialist visits. All the while I sat there watching her scream with no answer to it. By the end of the day the only answer I had was she was severely dehydrated and her blood volume was low in her heart which was making her levels drop. The rash was and still is unknown. That day she got to shots of saline water and by the next morning my happy baby was back. What they didn't tell me and I heard in rounds is that her heart was beginning to thicken. Basically because her lungs being so small it was making her heart work harder to oxygenate her body. So with any muscle working harder it gets bigger. Now its not to big of a deal if it doesn't continue but it is another thing we will have to monitor and keep an eye on.
Friday came and with that our move out of the nicu. I purposely didn't say anything to anyone, especially faith since I now knew she had her own agenda. Luckily dan was there for that since it was quite a shock. The room was such an upgrade with a tv, couch, and our own bathroom BUT the down fall was the lack of nursing. The main reason for going there first was to get used to doing it all on our own, and did we ever.
The thought was and was told that we would only be on the floor for a few days but that of course changed. I was put through the ringer of training and no sleep. See when she is on dialysis at night with her drip feeds was the only time she the up, but along with that if she threw up once her chance of coughing and throwing up was even higher. So I spent my nights in her room since the nurse would not hear her and the doctors were keeping us there for every little thing.
So I fought my butt off for nights on end with no sleep to show then what I am willing to do to get home, but it didn't work. That is when I broke down and got lost in all of it. All of the discharge planning, the equipment, the responsibilities, the what ifs. That its when I doubted myself and who I was as a mom...and too say the least it didn't last long.
For three days straight I lived in her room. One day I didn't even go to the bathroom our eat for 7 hours. Just to cram in all the info they should and could have done for 3 months. That is what they were going to keep me there for another week to do! Deaming me again of being incapable of taking care of her, even though I had been for months. It was like I was being bullied by the doctors. Dan wanted to pick us up wednesday, well wednesday came and went then they said maybe friday. When that changed and they said they wanted to wait till the following wednesday dan lost it and came to fight the battle I had been in for a week now. They also wanted to up her fill volume and up her hours and dextrose solution. All of which I questioned and didn't want happening, but again I wasn't being heard. But they heard Dan that's for sure! So sunday with chaos of packing three months worth of clothes, supplies, and a baby we were on our way home. Three months and four days later.
Wednesday, May 4, 2011
Smile perspective
Rejoice in what your given! Its when times are tough that that saying is so much harder and a bit annoying, but also when it is the most needed. Every day i walk through the halls here at the hospital and the moment i want to feel pitiful for myself all i need to see is the all the sick little kids. This of course being a childrens hospital, you see it all, but when you would compare the kids attitudes here to what an adult going through the same thing, you would be amazed. There was a little boy today when i was getting back from my, i think third time walking back to the apartment, that made my heart ache and smile at the same time. When he got wheeled in by his dad he was attached to a stand full of meds and a feeding tube. I would guess he was about four, no hair and swollen from what i could guess as luekemia treatments. But through all the pain he was in and could see from the just the machines attached to him, was his smile. He looked at me and just smiled, a smile you could see from his forehead to his toes, and i teared up. At that moment all i could think about was how self involved ive been lately complaining about not being home and having a cold or whatever it is. But then this angel of a child came on attached to medicine to feed him, meds to releive his pain, and support him for hopefully a long time till he goes home. And all he had was a smile and just happy, even in pain and im sure far away from a home or place he wished he was.
It puts it all in prospective when you walk through these halls, how grateful i am to have my baby still, a house i CAN go back to, and a family i love. Sure i still have my bouts, but God definitely put me in a hospital where its hard to really feel bad for yourself when so many little kids are so sick next to you, most way worse off. Since we have been here at this hospital we have personally seen three families that have lost thier babies, all little girls. I know partly the feeling of knowing you are going to loose your child, but to really loose them i dont. So again the fact that i was given the gift to have her still is beyond something to rejoice in.
Now of course im hurting pretty bad i wont be home for mothers day now, but i now know better then to hope to be home for something in particular. That way im not quite as disappointed.
She is now on her third day of hand dialysis. They started out on low volumes since they dont want to chance leaking from the incission from surgery saturday. Before of course she was up to 175ml but the started her back at 50. They have gone up 10ml each day and wont try the cycler till she is atleast at 100. So doing the math that will be 3 more days till we will know if the surgery was successful. So this mom is crossing every toe, finger, and even eyes in hopes and prayers it works.
A few pics for those that are not on facebook to see how shes grown...
My brother gets to hold her
Four generations
My blue eyed beauty
No shortage of love for her...this picture tells so much.
It puts it all in prospective when you walk through these halls, how grateful i am to have my baby still, a house i CAN go back to, and a family i love. Sure i still have my bouts, but God definitely put me in a hospital where its hard to really feel bad for yourself when so many little kids are so sick next to you, most way worse off. Since we have been here at this hospital we have personally seen three families that have lost thier babies, all little girls. I know partly the feeling of knowing you are going to loose your child, but to really loose them i dont. So again the fact that i was given the gift to have her still is beyond something to rejoice in.
Now of course im hurting pretty bad i wont be home for mothers day now, but i now know better then to hope to be home for something in particular. That way im not quite as disappointed.
She is now on her third day of hand dialysis. They started out on low volumes since they dont want to chance leaking from the incission from surgery saturday. Before of course she was up to 175ml but the started her back at 50. They have gone up 10ml each day and wont try the cycler till she is atleast at 100. So doing the math that will be 3 more days till we will know if the surgery was successful. So this mom is crossing every toe, finger, and even eyes in hopes and prayers it works.
A few pics for those that are not on facebook to see how shes grown...
My brother gets to hold her
Four generations
My blue eyed beauty
No shortage of love for her...this picture tells so much.
The Smile!!!! (and the cheeks)
Friday, April 29, 2011
AAAHHHH!!!
AAAHHH!!!! That’s how I have to start and where I have seem to have been now for the last couple weeks. There have been countless moments I wish I had a soundproof padded room to have yelled and screamed, but instead my body has resorted to falling apart in tears. Proof would be falling apart in front of a group of doctors and strangers yesterday morning after they rounded on her to tell me what they know of as the plan. So I will back up a few days, or maybe it’s been a week now since they all seem to mold together with an event that may make me remember what day it is, or was.
The biggest thing and frustration has basically come down to her dialysis machine...the cycler. They have been messing with it now for two weeks. One day they mess with the volume and try that a day or two, then they try messing with the settings and try that for another day, then they switched the machine and tried doing a different kind of cycling setting. All this went on and on and on. It has been a fight for me to hold it together because of all of this. It is just so hard for me to think it is the ONE thing keeping us here. I have been having a really tough time now for about two weeks now because it has been now 9 weeks and 1 day that I have been living in a hospital room away from home and my family. The thing is, is I put in a descent and not farfetched hope about a month ago that I would be home by Easter or before. Well Easter came and went, no Easter egg hunt, no Easter dresses and pictures, no Easter service at church, but at least we had Easter dinner brought to us which would be the first homemade meal we have had in two months. By far was the hardest Easter to date for me, but I will have next year to make up for this year, and at least I am have all my kids instead of mourning the one I lost. This is where counting your blessings, is what I had to do to get through the day, but still is completely frustrating.
It was about three days prior that I was in her room doing her last feed before she was put on her tube feedings for the night that I broke down for the first time in front of the nurses. The thing is, is I have been holding my feelings in pretty good till recently for a few reasons, one that I was going to not be home for Easter, that she was healthy and able to be home with us except for “the machine”, and my kids were taking it really hard now. I had just gotten off the phone with them, which they now have been crying every time asking me to come home, which makes me holding my feelings in that much harder.
I sat there with them talking about how they were going to do something else and I lost it, but not tears this time, but anger and frustration. It is one thing when I am wanting and missing home, but when the kids are crying for me to be there, crying in school, grades being affected, and making comments that they don’t think I am ever coming home, I can’t hold it together anymore. I asked what the plan is, and why can’t I go home and do this manual dialysis till she is big enough for the cycler to work if that is the only reason? Now that has changed now, but at that time it was the first time that they had even thought of that! Really?! This is why I am getting to my wits end because it doesn’t seem like getting us home is their main goal each day or any day for that fact. So instead she has become more of their guinea pig from day to day on what they are going to try.
It seemed like there was maybe a hope for that until Saturday when we came back to the hospital after Tristan’s first baseball game. When we walked in the room her arms and hands had lost all of any color that she had. Her skin was as white as the bunny that lay next to her. I asked the nurse about it and they hadn’t even checked why. Really?? They ran the blood counts but all came back ok, but as her mom I know something was up and it was killing me along with an unknown kind of rash all over her. We luckily had one of the two doctors that actually have the family’s interest in hand on that weekend so he made them run the tests. Then he told us what may be going on and what he wanted to do to try to fix it and go forward not just stand still for days or weeks. First would be the dye study on Easter morning and then depending on what that showed they would do a TPA to try to clear the catheter and run heparin in her dialysate. (Which I said weeks ago to do).
Sunday morning came and we packed our little peanut up and took a walk to radiology. It was the best thing carrying her there. She was so wide eyed in amazement of the ceiling and things changing around her, since she was so used to the same thing her whole life. And for me to be able to carry and walk with her felt just, awesome to put into a word. It made me imagine being able to take her in public and outside some day, maybe soon, to smell the fresh air and see things, anything but the inside of her hospital room.
Mel had called the night prior to ask if it was ok to come see me after church, which how could I say no? I would never ever turn down the chance to have time to see my family or visit with someone beside hospital staff to make me feel almost normal for a minute. When I walked out to hug them I fell into Mel’s arms in tears. It would be the second time that day that I broke down since earlier that morning in the shower realizing I wasn’t there waking up with my kids excited for Easter egg hunts and what the day would hold. No excitement was in store for my day, just the longing to be anywhere but here. As I looked up over her shoulder I saw my Mom, Dad, and brother who came along with her too. It eased a pain in me knowing I would for a moment that day I would be with part of my family. Of course they couldn’t stay all day but before they left we sang ‘Because he lives’. Now if you want to make me cry play that song, and listen to the words. I have sang that song so many times in church and even when we baptized her too, but we only sung the chorus, so I will write the words out and see why everyone, yes even me, were in tears by the end….
Because He Lives
________________________________________
God sent His son, they called Him Jesus
He came to love, heal, and forgive.
He lived and died to buy my pardon,
An empty grave is there to prove my Savior lives.
Because He lives, I can face tomorrow.
Because He lives, All fear is gone.
Because I know He holds the future,
And life is worth the living just because He lives.
How sweet to hold a newborn baby,
And feel the pride and joy she gives.
But greater still the calm assurance,
This child can face uncertain days because He lives.
Because He lives, I can face tomorrow.
Because He lives, All fear is gone.
Because I know He holds the future,
And life is worth the living just because he lives
So Sunday came and went and nothing was really done. Then Monday came and they did the TPA, the first time it didn’t do much so they did another dose with the hopes that it would work or surgery was a for sure fact. Well as the second dose went in I prayed and prayed that it would work, and it did. Now it wasn’t flowing as well as it used to but it was a lot better and they said it would get better as time went on. They were right and Monday and Tuesday morning went really well and she was pulling a ton of fluid. I had to take off in the afternoon to go to Vanna's dance class. Now this is when I began to lose all patience again during and after rounds because they were not going to do anything, yet again. So another day would come and go before they would even try to get her going in the direction of home. As I left they were arguing with the nephrology attending for us, on why not to try the cycler today so we can see if it works. The thing is 24 hours to them in nothing, but for us it is 24 hours away from our life, our kids, our home, our family, and any sense of normalcy. Dan text me later that evening saying that they had got them to turn the cycler on. He kept in touch telling me it was running good and pulling fluid off, but I couldn’t get my hopes up since we have not had a good track record with it. And I couldn’t tell the kids and get there hopes up because I didn’t know if this was the real thing that was bringing us home.
When I got back that evening it was still working but Dan had to move her all over the place to get it to do what it needed. So to say the least it was not ideal, but I would take having to do this if it meant we could go home and it would be getting better. I stayed for a while after to try to feed her but she was so tired from being messed with that I headed back to get some sleep. I have been feeding her nonstop during the days and as of today they decided to turn off her tube feeds and rely solely on me or bottles during the night now too. This was a very happy moment for me besides all this dialysis stuff.
The next morning was an early one for me since I do her feeding once the daytime nurse comes on which ends up being between seven and eight. Now for normal people it may not seem so early but when you don’t go to bed till after 11 and don’t sleep because you can’t turn your brain off or can’t get comfortable (for the record HATE sleep number beds, even if I finally found my number). So I was dragging when I got up there and just having a low day feeling sorry for myself I guess since Dan was going to be leaving that day to go clean up the house and spend the night with the kids at home to try to get them on some sort of happy note. Now I was happy that he was going to do that, but then the other part of me was hurting and breaking knowing I couldn’t do it. So it just set me off on a mess to start.
When I got up to her room I fed her and she was getting reconnected to the cycler because the bags ran out and needed to be reset. The nurse got it all running and we sat and watched the numbers. The story of our life with her. First it was watching her SAT numbers and now it was her drain UF numbers. For a couple cycles I sat there moving, pulling, stretching, and manipulating her trying to get her to drain. Soon after I couldn’t take it anymore and put her back in bed. The nurse called and got the go ahead to disconnect her so that they would start her back on manual??? I sat there just staring at the nurse not knowing how to react or feel but just frustrated. I asked a simple question, will it get better? Is the catheter going to work as she grows, or is this just going to be like this forever? As her mom I want what s best for her and I don’t in any way want her to go to surgery but if that is what needs to happen for my baby girl to come home, then I will be ok with it. The nurse of course couldn’t say anything and I looked out the window and wept. I began to then pray that God would give me the wisdom and words to tell the doctors how I felt. At that moment the nurse came in to tell me they had rounded but wanted to talk to me.
Well I am now at the point I was in the beginning. I sat there as they told me the nephrologists would talk to the surgeon and let me know what the plan would be. The plan? I of course asked what they knew and of course nothing, then I asked when I would hear from the doctor and when she was planning on talking to the surgeon. And again they didn’t know. That is when I couldn’t contain it anymore and I fell apart. I couldn’t even catch my breath; it was as if all my voice and ability to hold it in was gone. All I could think about was what would I tell my kids, when would I ever be home with them. I got enough of a breath to say sorry and went into Faiths room. It was in that moment one by one each doctor and nurse came in and said sorry and explained what they were going to do to get a plan made.
It is not so funny to me how God has used me as his guinea to learn patience, faith, and love when I feel I have none to give. In that moment he gave me the tears to be the voice I prayed for. Who knew tears spoke louder than words.
SO here I sit writing this out for the second time, since the first time I erased it all after venting for two hours. Again I say patience. I am praying for peace and a calmness of knowing he has a plan and will hopefully have it shown, and soon. Because as of 6 am his coming morning I have to give the ok to go ahead with surgery to find out and fix her catheter issue. It could be as little as a 45 minute surgery, but as much as a new catheter placement, which means putting in a hemo marker till the other catheter is healed and ready to use. And as those knowing her, know that she does not handle the hemo dialysis well and requires blood products to sustain her.
So I will fall asleep tonight praying, and begging for peace over and over and over again. Cause I would be lying if I said I wasn’t so scared and so so uncertain. Here’s to another day of being Gods guinea pig, and not my daughter being theirs.
The biggest thing and frustration has basically come down to her dialysis machine...the cycler. They have been messing with it now for two weeks. One day they mess with the volume and try that a day or two, then they try messing with the settings and try that for another day, then they switched the machine and tried doing a different kind of cycling setting. All this went on and on and on. It has been a fight for me to hold it together because of all of this. It is just so hard for me to think it is the ONE thing keeping us here. I have been having a really tough time now for about two weeks now because it has been now 9 weeks and 1 day that I have been living in a hospital room away from home and my family. The thing is, is I put in a descent and not farfetched hope about a month ago that I would be home by Easter or before. Well Easter came and went, no Easter egg hunt, no Easter dresses and pictures, no Easter service at church, but at least we had Easter dinner brought to us which would be the first homemade meal we have had in two months. By far was the hardest Easter to date for me, but I will have next year to make up for this year, and at least I am have all my kids instead of mourning the one I lost. This is where counting your blessings, is what I had to do to get through the day, but still is completely frustrating.
It was about three days prior that I was in her room doing her last feed before she was put on her tube feedings for the night that I broke down for the first time in front of the nurses. The thing is, is I have been holding my feelings in pretty good till recently for a few reasons, one that I was going to not be home for Easter, that she was healthy and able to be home with us except for “the machine”, and my kids were taking it really hard now. I had just gotten off the phone with them, which they now have been crying every time asking me to come home, which makes me holding my feelings in that much harder.
I sat there with them talking about how they were going to do something else and I lost it, but not tears this time, but anger and frustration. It is one thing when I am wanting and missing home, but when the kids are crying for me to be there, crying in school, grades being affected, and making comments that they don’t think I am ever coming home, I can’t hold it together anymore. I asked what the plan is, and why can’t I go home and do this manual dialysis till she is big enough for the cycler to work if that is the only reason? Now that has changed now, but at that time it was the first time that they had even thought of that! Really?! This is why I am getting to my wits end because it doesn’t seem like getting us home is their main goal each day or any day for that fact. So instead she has become more of their guinea pig from day to day on what they are going to try.
It seemed like there was maybe a hope for that until Saturday when we came back to the hospital after Tristan’s first baseball game. When we walked in the room her arms and hands had lost all of any color that she had. Her skin was as white as the bunny that lay next to her. I asked the nurse about it and they hadn’t even checked why. Really?? They ran the blood counts but all came back ok, but as her mom I know something was up and it was killing me along with an unknown kind of rash all over her. We luckily had one of the two doctors that actually have the family’s interest in hand on that weekend so he made them run the tests. Then he told us what may be going on and what he wanted to do to try to fix it and go forward not just stand still for days or weeks. First would be the dye study on Easter morning and then depending on what that showed they would do a TPA to try to clear the catheter and run heparin in her dialysate. (Which I said weeks ago to do).
Sunday morning came and we packed our little peanut up and took a walk to radiology. It was the best thing carrying her there. She was so wide eyed in amazement of the ceiling and things changing around her, since she was so used to the same thing her whole life. And for me to be able to carry and walk with her felt just, awesome to put into a word. It made me imagine being able to take her in public and outside some day, maybe soon, to smell the fresh air and see things, anything but the inside of her hospital room.
Mel had called the night prior to ask if it was ok to come see me after church, which how could I say no? I would never ever turn down the chance to have time to see my family or visit with someone beside hospital staff to make me feel almost normal for a minute. When I walked out to hug them I fell into Mel’s arms in tears. It would be the second time that day that I broke down since earlier that morning in the shower realizing I wasn’t there waking up with my kids excited for Easter egg hunts and what the day would hold. No excitement was in store for my day, just the longing to be anywhere but here. As I looked up over her shoulder I saw my Mom, Dad, and brother who came along with her too. It eased a pain in me knowing I would for a moment that day I would be with part of my family. Of course they couldn’t stay all day but before they left we sang ‘Because he lives’. Now if you want to make me cry play that song, and listen to the words. I have sang that song so many times in church and even when we baptized her too, but we only sung the chorus, so I will write the words out and see why everyone, yes even me, were in tears by the end….
Because He Lives
________________________________________
God sent His son, they called Him Jesus
He came to love, heal, and forgive.
He lived and died to buy my pardon,
An empty grave is there to prove my Savior lives.
Because He lives, I can face tomorrow.
Because He lives, All fear is gone.
Because I know He holds the future,
And life is worth the living just because He lives.
How sweet to hold a newborn baby,
And feel the pride and joy she gives.
But greater still the calm assurance,
This child can face uncertain days because He lives.
Because He lives, I can face tomorrow.
Because He lives, All fear is gone.
Because I know He holds the future,
And life is worth the living just because he lives
So Sunday came and went and nothing was really done. Then Monday came and they did the TPA, the first time it didn’t do much so they did another dose with the hopes that it would work or surgery was a for sure fact. Well as the second dose went in I prayed and prayed that it would work, and it did. Now it wasn’t flowing as well as it used to but it was a lot better and they said it would get better as time went on. They were right and Monday and Tuesday morning went really well and she was pulling a ton of fluid. I had to take off in the afternoon to go to Vanna's dance class. Now this is when I began to lose all patience again during and after rounds because they were not going to do anything, yet again. So another day would come and go before they would even try to get her going in the direction of home. As I left they were arguing with the nephrology attending for us, on why not to try the cycler today so we can see if it works. The thing is 24 hours to them in nothing, but for us it is 24 hours away from our life, our kids, our home, our family, and any sense of normalcy. Dan text me later that evening saying that they had got them to turn the cycler on. He kept in touch telling me it was running good and pulling fluid off, but I couldn’t get my hopes up since we have not had a good track record with it. And I couldn’t tell the kids and get there hopes up because I didn’t know if this was the real thing that was bringing us home.
When I got back that evening it was still working but Dan had to move her all over the place to get it to do what it needed. So to say the least it was not ideal, but I would take having to do this if it meant we could go home and it would be getting better. I stayed for a while after to try to feed her but she was so tired from being messed with that I headed back to get some sleep. I have been feeding her nonstop during the days and as of today they decided to turn off her tube feeds and rely solely on me or bottles during the night now too. This was a very happy moment for me besides all this dialysis stuff.
The next morning was an early one for me since I do her feeding once the daytime nurse comes on which ends up being between seven and eight. Now for normal people it may not seem so early but when you don’t go to bed till after 11 and don’t sleep because you can’t turn your brain off or can’t get comfortable (for the record HATE sleep number beds, even if I finally found my number). So I was dragging when I got up there and just having a low day feeling sorry for myself I guess since Dan was going to be leaving that day to go clean up the house and spend the night with the kids at home to try to get them on some sort of happy note. Now I was happy that he was going to do that, but then the other part of me was hurting and breaking knowing I couldn’t do it. So it just set me off on a mess to start.
When I got up to her room I fed her and she was getting reconnected to the cycler because the bags ran out and needed to be reset. The nurse got it all running and we sat and watched the numbers. The story of our life with her. First it was watching her SAT numbers and now it was her drain UF numbers. For a couple cycles I sat there moving, pulling, stretching, and manipulating her trying to get her to drain. Soon after I couldn’t take it anymore and put her back in bed. The nurse called and got the go ahead to disconnect her so that they would start her back on manual??? I sat there just staring at the nurse not knowing how to react or feel but just frustrated. I asked a simple question, will it get better? Is the catheter going to work as she grows, or is this just going to be like this forever? As her mom I want what s best for her and I don’t in any way want her to go to surgery but if that is what needs to happen for my baby girl to come home, then I will be ok with it. The nurse of course couldn’t say anything and I looked out the window and wept. I began to then pray that God would give me the wisdom and words to tell the doctors how I felt. At that moment the nurse came in to tell me they had rounded but wanted to talk to me.
Well I am now at the point I was in the beginning. I sat there as they told me the nephrologists would talk to the surgeon and let me know what the plan would be. The plan? I of course asked what they knew and of course nothing, then I asked when I would hear from the doctor and when she was planning on talking to the surgeon. And again they didn’t know. That is when I couldn’t contain it anymore and I fell apart. I couldn’t even catch my breath; it was as if all my voice and ability to hold it in was gone. All I could think about was what would I tell my kids, when would I ever be home with them. I got enough of a breath to say sorry and went into Faiths room. It was in that moment one by one each doctor and nurse came in and said sorry and explained what they were going to do to get a plan made.
It is not so funny to me how God has used me as his guinea to learn patience, faith, and love when I feel I have none to give. In that moment he gave me the tears to be the voice I prayed for. Who knew tears spoke louder than words.
SO here I sit writing this out for the second time, since the first time I erased it all after venting for two hours. Again I say patience. I am praying for peace and a calmness of knowing he has a plan and will hopefully have it shown, and soon. Because as of 6 am his coming morning I have to give the ok to go ahead with surgery to find out and fix her catheter issue. It could be as little as a 45 minute surgery, but as much as a new catheter placement, which means putting in a hemo marker till the other catheter is healed and ready to use. And as those knowing her, know that she does not handle the hemo dialysis well and requires blood products to sustain her.
So I will fall asleep tonight praying, and begging for peace over and over and over again. Cause I would be lying if I said I wasn’t so scared and so so uncertain. Here’s to another day of being Gods guinea pig, and not my daughter being theirs.
Wednesday, April 20, 2011
Tough?
As my one of best friends put in a letter she wrote was if God built us Ford tough? Well lately I'm feeling more like a battery operated car. Who runs great when its charged up, but still not the best, but also doesn't run once the charge is gone. The charge in me has been quite low this last week and seems to be just getting worse. For the most part I've felt pretty tough through all of this trial we have gone through with Faith, with of course the occasional battery loss, but I'm now at a point of breaking down again like i was those first couple weeks of her birth.
Now as a certain someone keeps saying, quite thinking of the negative and be positive. The thing is i am, but there is a point with me at least i get discouraged. I'm away from most all the things i love and the place i want to be. I'm in an apartment with a bed i have to say is one of the most uncomfortable things I've ever slept on which has now given me a week and a half of no sleep(along with anxiety attacks). I spend my days in a confined hospital room not being able to leave for any long period of time, because the baby depending on me to survive is not able to leave with. I fight it seems daily with one of her many different doctors for a say in what goes on with 'my' baby. The thing is, is there is so much of this life I've been living now 2 months that is now really getting to me.
I also have allot to be thankful for. Faith is surviving and is by far the most amazing person i have ever known.
Yesterday i came to my wits end with the doctors. The thing is for over a week i have been fighting to get them to push me feeding her, over being tube fed. As her mom i want to best for her and would understand completely them wanting that had she not been eating as well as she had or had i not been producing as much milk as a Holstein cow. But the thing is, is she is a porker and has no shortage of milk. So after a complete fit and having to pull our kidney doctor in...which they call the bulldog, because she gets things done...did they finally agree to turn her feeds off all day and just supplement her during the night. Yeah for me! Now the stink part about the tube feeding is that its a constant drip. So she was never hungry, nor full. So yesterday once they turned them off she finally felt the need to just snack enough no fight the feeling of hunger but not filling herself enough that not an hour later she was starving again. So i spent the whole day except an hour to eat and change laundry, in her room holding, burping and feeding. So this mama is SORE! I have been putting ointment on every time after she is done feeding, but that doesn't take away from the toe curling pain every time she latches on today.
Also is the world of daily hopes to go home they are trying the cycler again for a third time today to see if it will work. It is beyond frustrating having a machine working dictate when you can go home so for me it is weighing on me hard and i am beginning to see my patience with everything dwindling. Well they ran the machine for six hours, and the whole time it kept alarming. Either that it was low flow volume or that it wasn't going into her well enough.
So again the dialysis nurse came and they looked at her x-ray to see what kind of port she had. In looking at it they noticed it is against her pelvis, so now we wait to see what the surgeons say. Because it was mentioned that they will try everything they can to get it working but she may have to have surgeons do another port or fix hers she has now. So to say the least i am beyond anxious for this machine to start doing its job.
So here i sit waiting on a machine to let me go home, doctors to give answers, and patience to deal with it all. So i pray over and over for my battery to charge and to be able to get back up and running again, happy again, and get back the faith i had that things were going the way they should.
As i have said to myself so many times, faith is not relying on my own understanding why, but the knowing God knows why and having faith it will work out the way it should.
My little miss faith, also known as booger butt now by Dan, lays here in my arms which i am so so thankful for and is what keeps me sain as i can be. She has her battle wounds that show now all over her chest and belly. But she is such a perfect angel, with her chubby cheeks and hilarious complains.
So i ask as I've asked now daily it seems for days, that you can pray for us. For me to get my faith and hope back, and peace that it will be OK. For my baby that this cycler will start working so i don't have to watch her in pain from cramping and being just flat uncomfortable. And for our other kids, they are missing us so much, not sure if its as much i as i miss them, but they need us home. And also for our other family, that they are given strength and thanks for all they are doing for us.
Well i will leave now in hopes that the next time i write to to report joyous news, and not so down and week feeling. I pray that soon i am back to feeling Ford tough.
Luvs
Now as a certain someone keeps saying, quite thinking of the negative and be positive. The thing is i am, but there is a point with me at least i get discouraged. I'm away from most all the things i love and the place i want to be. I'm in an apartment with a bed i have to say is one of the most uncomfortable things I've ever slept on which has now given me a week and a half of no sleep(along with anxiety attacks). I spend my days in a confined hospital room not being able to leave for any long period of time, because the baby depending on me to survive is not able to leave with. I fight it seems daily with one of her many different doctors for a say in what goes on with 'my' baby. The thing is, is there is so much of this life I've been living now 2 months that is now really getting to me.
I also have allot to be thankful for. Faith is surviving and is by far the most amazing person i have ever known.
Yesterday i came to my wits end with the doctors. The thing is for over a week i have been fighting to get them to push me feeding her, over being tube fed. As her mom i want to best for her and would understand completely them wanting that had she not been eating as well as she had or had i not been producing as much milk as a Holstein cow. But the thing is, is she is a porker and has no shortage of milk. So after a complete fit and having to pull our kidney doctor in...which they call the bulldog, because she gets things done...did they finally agree to turn her feeds off all day and just supplement her during the night. Yeah for me! Now the stink part about the tube feeding is that its a constant drip. So she was never hungry, nor full. So yesterday once they turned them off she finally felt the need to just snack enough no fight the feeling of hunger but not filling herself enough that not an hour later she was starving again. So i spent the whole day except an hour to eat and change laundry, in her room holding, burping and feeding. So this mama is SORE! I have been putting ointment on every time after she is done feeding, but that doesn't take away from the toe curling pain every time she latches on today.
Also is the world of daily hopes to go home they are trying the cycler again for a third time today to see if it will work. It is beyond frustrating having a machine working dictate when you can go home so for me it is weighing on me hard and i am beginning to see my patience with everything dwindling. Well they ran the machine for six hours, and the whole time it kept alarming. Either that it was low flow volume or that it wasn't going into her well enough.
So again the dialysis nurse came and they looked at her x-ray to see what kind of port she had. In looking at it they noticed it is against her pelvis, so now we wait to see what the surgeons say. Because it was mentioned that they will try everything they can to get it working but she may have to have surgeons do another port or fix hers she has now. So to say the least i am beyond anxious for this machine to start doing its job.
So here i sit waiting on a machine to let me go home, doctors to give answers, and patience to deal with it all. So i pray over and over for my battery to charge and to be able to get back up and running again, happy again, and get back the faith i had that things were going the way they should.
As i have said to myself so many times, faith is not relying on my own understanding why, but the knowing God knows why and having faith it will work out the way it should.
My little miss faith, also known as booger butt now by Dan, lays here in my arms which i am so so thankful for and is what keeps me sain as i can be. She has her battle wounds that show now all over her chest and belly. But she is such a perfect angel, with her chubby cheeks and hilarious complains.
So i ask as I've asked now daily it seems for days, that you can pray for us. For me to get my faith and hope back, and peace that it will be OK. For my baby that this cycler will start working so i don't have to watch her in pain from cramping and being just flat uncomfortable. And for our other kids, they are missing us so much, not sure if its as much i as i miss them, but they need us home. And also for our other family, that they are given strength and thanks for all they are doing for us.
Well i will leave now in hopes that the next time i write to to report joyous news, and not so down and week feeling. I pray that soon i am back to feeling Ford tough.
Luvs
Saturday, April 9, 2011
TORN TORN and yes TORN
If I could write a story, a story that made you laugh, cry, smile, weep with joy, burrow in tears, and scream in frustration. Then the story of Faiths journey so far would be definitely that. Now from her point of view I don’t know what she would write besides how much her mother smothers her with kisses, her sisters sings and talks WAY too much, how her one brother and sister argue with each other all the time, and how much her mom and dad argue about who is going to hold her. But from my standpoint I have my days of complete joy and days where I end them in silent tears. Today I would say I am kind of in between. I had an ok day with my definite highs and lows, but ending it on an ok note….I think? A good note would be sitting here typing this hearing her sleeping next to me, kids in their beds and home. Soon I have to keep saying, soon.
My days have been filled with OTPT sessions (therapy for Faith), classes (to learn about dialysis), and trying to get her awake enough to practice what we are trying to accomplish. Now that she is not intabated and on PD dialysis she can now be fed orally. The thing is though with being intabated so long she has a oral aversion and doesn’t know how to suck, swallow, and do it all in unison. For me it’s been a bigger struggle to stay positive then you would think, since I should in all reality be happy she is even surviving. But I want to be the one supporting her survival now and not being able to do it the way I want to is a minute by minute struggle for me. I constantly have to keep looking at the big picture in what she is doing, what she is accomplishing, and what steps she is taking. For me with both of my kids being able to feed them was a very big deal to me and was a very big thing for me to try with her once she was born. Well that of course changed when I found out they would be taking her from me the moment she was born to hopefully get her to survive.
So I sit here tonight hearing my other kids argue about what the best part of their day was and so filled with joy, but in the same instant I am aching to be over there holding Faith.
Today was hard for me at first. All week the kids have been here for spring break so I have finally felt not quite as torn between homes. But I still am not home with my animals, my other family, Jordan, and just home. I have been wanting to take the kids to the zoo since it is at the same exit as the hospital and Dan mentioned yesterday that we should take them today. At first I was all about it, but then I thought about Faith. The fact I wouldn’t be there to do her therapy when she woke up, and that I wouldn’t be able to pump till we got back. That’s where the ultimate conflict came for me because I wanted to do that for my kids and get away from the hospital room, but I wanted to be there for Faith and not leave her alone. Dan has been able to handle this lately a lot better than I have. Because now I feel like I have more of a role in getting her better, and ok when she is upset. And he is feeling a lot better about leaving her. SO conflict again for me.
So I guess the best way to put the way I feel, is torn. My life, my heart, and my family are in two different places. And this mom doesn’t know how to do it. SO I pray and pray and continue to pray for peace. And more than anything healing for my baby girl so she can go home and we can be a family again.
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