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.

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

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.

Smiles

Where would I start on how I feel? At this moment exhausted. Not the normal new mom exhausted because I’m up all night feeding or consoling, but emotionally exhausted. I did stay up till after 1 am trying to get her to sleep, which she finally stopped fighting and did. But yesterday took a lot out of me. I woke up yesterday morning after Dan left to go up and see Faith I tried to get my extra few minutes of sleep since I was up late with her that night too. Usually I wait for him to text me to tell me how she was doing and then I’m able to rest, but I was so tired I fell back to sleep before I got the text and about an hour later I checked my phone and he had text me and told me her circuit was down and he was going to hold her. Now that woke me up right away but since I am pumping I just can’t run over in the morning, so I sat there pumping getting more upset as the minutes went by that I wasn’t there and got no call. So poor Dan by the time I got over there I was fuming, but lucky for him when I am that mad I get quiet and don’t talk. Which sometimes doesn’t make sense even to me?

For me I was upset I was missing that time with her out of her bed, which we haven’t been able to do for days, that I was not there to know what was going on with her care and circuit, and that no one took the time to call me to let me know. So many things with her a big deal compared to a healthy baby, and holding is a BIG deal. Me being upset only lasted a minute and I went to her rounds to hear what their plan was. To begin with the plan was to wait through the weekend to start on the other kind of dialysis but they didn’t want to start up another circuit if the one went down and it went down at 4am that morning. Now the more I thought about it I got upset again. Dan had not text me till 7:20am about the circuit and we never got a call that any of this had happened that early. So all that time she was going through all of it alone. They went through what the plan was and her surgeon gave the ok to use the PD port but as long as they didn’t go up on fluid that they pump in her. So the plan is to pump 45ml in and let it dwell for 30 minutes then drain for 10 minutes then cycle back over.

After rounds were over Dan let me hold her since we had to wait for the dialysate to warm up. When I showed up that morning Dan had mentioned she was withdrawing from the pain meds they had turned off when the circuit went down. So they had given her a dose of pain meds before I had shown up so she was pretty out of it. But that soon changed after I got her in my arms. Watching your baby go through withdraws like this are scary, and so heart wrenching at the same time. She first started getting a little fussy, then started shaking, then sweating and sneezing (which is a sign of withdraws), and then the worst was when she started gagging. They finally gave her the dose of medicine and she calmed down and I quietly cried just holding her and not being able to help her. The rest of the day held pretty much the same cycles of withdraw, but along with the ones later were vomiting. The doctors finally decided to put her back on all the meds and just would have to wean her WAY slower so she slowly got a little more peaceful, but that didn’t happen till about 9 pm and by that time I was so wore down I couldn’t even sleep of I could.

The dialysis started up about 11am after the nurses came in and showed Faiths nurse how to set it up and record her fluid intake and output. The biggest thing was that she was pulling more fluid then was put in and that her fluid stayed clear with no blood. The first fill and dwell went good although she puked when she went to push to but mainly because of the pressure on her stomach. When she went to drain I still had not eaten since I woke up but wanted to see what her output was, which was 60 and clear! The rest of the day she was draining at least 15 ml more with each drain. So by the end of the day she had pulled most of the fluid that she had built up while waiting to start up the dialysis again. It was working better if not to good then they needed it to. After the day I had it was needed for a sigh of relief.

So my little girl has been getting so strong and amazing us every day with what she has accomplished. Yesterday marked another amazing day but the BIGGEST one for me so far. I could try breast feeding her!! I was in tears with the thought of being able to knowing she would probably take a while to figure out since her sucking reflex is still a work in progress. This is one of the things I couldn’t think about since I hurt so bad not being able to. When they asked me to sit down and laid her in my arms she instantly started looking. Of course she didn’t know what she was looking for but her instincts were there and I couldn’t help but smile and cry all at the same time. When she latched on her eyes were closed and the moment milk came out her eyes became the size of saucers, and then she fell asleep. We tried a few times for an hour but she was so comforted laying in my arms and being close to me that she just kept falling asleep. The last time we tried she sucked a couple times then pulled back and just lay there, eyes open just staring at me for almost a half hour. By the time I put her back my heart was so warm and beaming. I tried two more times that day but every time it was almost like being next to me like that just instantly made her sleep.

Mel and the family came up and had dinner with us and then we went to go see her. Kyle was in tears since the last time he saw her she was so sick. Then Mel got to witness her trying to nurse, and make all her many noises. I could sit there all day just watching and listening to her. Even her cries I love to hear, and boy does she have faces! Dan is getting quite frustrated with me because I don’t want to leave her side and go eat or spend time away from her. So for now this is my struggle to find the balance. It is not that I can take her with me and spend time with my family. So it is either her or them, and for that I am starting to crumble trying to make it work.

When we got up this morning they were doing rounds on her as we walked in. This is, and was the highlight of my day…they used the word “home”. To most people this may not seem like that big of a deal. But when you go for almost a month of them rounding and all they talk about is how to keep her alive, and then go into talking about what needs to happen for her to come home, it made me weep. Just to hear that they were saying it, thinking it, and knowing she would be going home is amazing to say the VERY least. To think that just two weeks ago it wasn’t even a thought and now we are working towards that is a God given miracle. It shows at the very least what the power of prayer can, and did for our angel. We also got to start kangaroo care, as they call it. It is where we lay her against us, skin to skin. The first time I did it we both fell asleep. It is the most amazing, warm, relaxing feeling I could even describe.

So to put it lightly as a miracle would be so short of what it is. I still wake up and amazed what God has done for us through her. She is our amazing fighting Faith and we are so proud and love her so much. 

So now we pray that she can be home by Easter and not the prayers that she will be alive tomorrow. God is good!!! We have and continue to be so blessed by our family and friends that have been so supportive and helping us out so much. Of course I am still pretty stressed about things but the willingness of people to help us has nothing short of amazing. SO now I just pray I can keep my head on my shoulders and figure out how to be a mom to kids in two places and a wife to a husband so he doesn't feel neglected and a daughter and sister to a family that has been so great to me.