My new normal. What is that? Every day I go through the motions. Meds, fluids, vitamins, more fluid, germ control, caution control and fluids and meds again. It is just our normal, our days, her life. So most every day it is just what we do, it’s life. But yesterday getting the call that we need to get ultrasounds of her kidney and an echo of her heart because of her enlarged heart wasn’t a normal day to day. So it’s times like that, that the reality hits and hits hard. As a family I think we deal with it well. It helps that she is such a spunky happy child that people are drawn to. I absolutely love this place for what they are able to do for her, but in the same turn hate it. Have such anxiety the moment I turn into the hospital drive I remember the days, and nights walking across the cross walk from the parking garage or the Ronald McDonald house. The sound of the auto paper towel rolls that bring me right back to the washing station in the NICU. You’d think that the fears and anxiety would subside, but nope. As she lays on the table as they ultrasound her or holds her arm out to be poked, unfazed, since this is “her” normal. It makes my heart ache. I hate that she has to deal with this disease, and that she knows nothing else than monthly doctors, daily meds and a fluid Nazi Mom. So now we wait for lab results, ultrasound results and return home to our normal. Dealing with this stupid disease.

Tests and more tests

There is something about going to that hospital that takes so much from you. Every time I drive up that hill I start to have an anxiety I can't really explain. It must be almost like how Faith feels. Because the whole way up there, every time, she asks where we going and then, even are we going home. It is a reality that days like today are hard to take. I know, we know, what the long term possiblity, and likely is, but I can't think about that. So like last week at dance class seeing her struggle to keep up is when the bitter reality hits. Yes I have an amazing beautiful light of the world little girl, but I also know this girl has a disease that takes more lives than it should. So it is hard, it sucks and I'm hurt and mad at moments. Today we went for another ultrasound to look at not just her kidney, but her spleen and liver too. For quite some time I've noticed the size of her spleen just to touch, but now that her blood counts are dropping they are listening. Her kidney is still swollen by has not changed in the last couple weeks so just monitoring. As for the other part of the hour plus ultrasound all I could get today is her spleen is large and her liver has damage that is due to her disease. Not sure how to sleep on that but I ask again for prayers I can see that beautiful girl in the morning not thinking of the harsh reality. This disease can kill her so we ask for prayers for her. Just not to thrive but to survive. We have been blessed with such a gift in her and want many many more years to take videos and pictures of her smile

Wish so much for the cookie cutter life

The more I write the more I feel like I ask and beg the same things. But as a mom of a medically intensive kid it seems like it is all good, or all NOT! At this point, we are not! As most know this flu/cold season had been bad, very bad. Not just the fact that the flu shot didn't work but the amount of BAD bugs has been scary. Put that into my mind,or those in my shoes all over this world. I have a child that a cold is not just a cold. A cough is not just a cough, or even a runny nose. So all those mom's that freak out when they have a booger, I honestly wished I could only see a runny nose as a runny nose. Faith now has been fighting a cold for over a month. It gets better then back with another symptom. Well Saturday the cold turned it's ugly head, and quick. Cough started first, then nose, then by Monday into her lungs. Antibiotics were started after now two nights of not much sleep for either Faith or I. Then today comes, we slept better in between coughs, nap was ok but was just not herself. Then, now, wheezing, the scariest thing for her and this family. Faith didn't have normal lungs and for that matter normal immune system to help what is going on in her little body. So now this day before us that was supposed to be a check up is beginning to look way worse. That I can stomach more almost, not really but almost, but if she gets worse the trip that all of us have been dreaming of and needing so much won't happen. So mundane as I might sound I scream in my soul for prayers for her, on so many levels. For healing most, and that I wont have to disappoint the kids yet again because Faith is sick. To many times do the siblings of a terminally ill child get forgotten and I really hope they don't feel the disappointment soon again. So as a mom I past for rest for me that I can manage what I ahead of me but mostly rest and healing for Faith.

So I sit here mad hurt crying, mad hurt yelling, mad hurt and just plain MAD! I'm covered in vomit not even knowing how many times, in tears, in fear, and mad. My baby, innocent, lies in my arms in between fits of screaming and puking fighting a disease that is going to take her life. Yes! Her life! Why? What did I do? If I could have a talk with God right now I would have him take mine, right now to save her from this. Yes I'm so very happy I was a match to donate till her but daily, like now, I know it's just a bandaid. As I sit here I type, I catch my tears from falling on her and my soul screams, the point of crying where no tears fall anymore. This is not fair, and not ok. This child is such a light to so many, and I'm sorry but right now I'm broken. I don't get it, I don't see it, all i see is a innocent child screaming in pain asking to be helped and I can't. Broken just flat out broken. So right now I pray for God to give me strength that I can't get, strength that I don't want that I have to have, and strength to hold the tears for smiles I know I'll have. Amen...but crying still because my soul is flat out broken

Yet another surgery

Yesterday started way too early, especially when I couldn’t sleep at all. We got on the rode a little before 5am and headed to Seattle. Of course the traffic was horrible. I broke into tears twice on the way up to check her in. This surgery has been a really hard one to be ok with, which I don’t think you ever want them to have surgery. When we arrived Dans' mom was there and since we were the first case for Dr Murguerian and Healy we got back to the e pre op room quickly after checking in. Of course the normal run through of all the teams involved came in telling what they would be doing and the risk of their side of things, which is always so settling. This whole time it was pretty easy keeping Faith distracted and mind off of all the doctors coming in and out. But that all changed when I put on my scrubs to take her back to the OR. She cried the whole way and my throat at that point already had the lump in it trying to keep the tears down. Once I had to lay her on the table for them to put the gas mask on she started to scream “mommy please no, mommy all done”, with the look of complete fear in her eyes. It was at that point every fiber of my being fought to not break down and stay calm and sing her to sleep. Feeling her go lifeless in my arms made my soul break and I lost it. I held the tears back as well as I could while I walked back to the pre op room to Dan and that is when I don’t remember much but crying from depth of my toes. This surgery from the moment it was told she needed has not set well with me at all, but knew she needed it. I soon found out why I had that feeling. She was taken back to the OR at 7:40am and sat in the waiting room with Gus and Chris, and at 11:50 we got the page she was heading to recovery. That is when her surgeons came out telling how it went and how it went way quicker since she didn’t have as much scar tissue as they expected. They needed to place a stint in which will need to be removed in a few weeks and check if the surgery worked but other than that they said it went well. We sat for way longer than normal waiting to be paged to go to the room to see her. We finally got a page that one of us needed to go back to recovery with her, since they needed help. Dan let me go and I walked back to hear her crying. We tried everything to get her calmed down but the more she woke up, the more agitated she got, feeling the catheter, ivs and pain. With every person that came in the more upset she got. We discussed options of what we could do to help with her pain and anxiety. The thing is when you are in the hospital that much you know what’s going on plus she is very un fond of catheters which all combined was not helping her keep her oxygen up or stop crying. So morphine and valium was ordered for pain and anxiety and another med to help with bladder spasms. Finally with that and her epidural I was able to get her to calm down and relax so we could get to our hospital room. Once we were back in the room of course everyone comes and checks her and asks questions, so much so that she was not able to nap. Then the long night began. First being told that her creatinine a few weeks ago was not good, which I was never told and that would be checking in the morning and may have to do ultrasounds on her kidney again to check it. So that set the night off not at all on the right foot. Then vitals were supposed to be only every 4hours which should mean between those times she, and I are able to sleep, but that was NOT the case. The longest stretch we got was an hour and 20 minutes. About half way through the night too her catheter got plugged so they had to resituate it and upset her even more, along with a needle poke again to wake her up this morning. So to say the very very least this morning I am exhausted, upset they wouldn’t leave her alone and now waiting for some kind of word on what the plan is. Another fun time in the hospital

Strength When I'm Weary

Ok this is a moment of quiet, except the dog snoring beside me. I hit a place today, tonight, this week, that I haven’t hit in a while and was mentioned by some people that I am negative and don’t think positive. So for myself I started to type to get through my own tears. I have to agree somewhat at this moment just because of the blows I was hit with this weekend and the last few weeks that I am in a funk, but trying really hard to keep above water. I have to say feeling like garbage does not help, at ALL. I am happy with so many things every day and seconds throughout the day but those aren’t the moments people seem to see in me, and for that I am sorry. It is a little over three years ago I was sitting in conference rooms, first to tell me the condition of the baby in my womb, and then months of over and over repeats of that condition. This still goes on today, over and over. For me I think I try so very hard to smile whenever I can, but I fight to do so. For those who don’t understand it hurt and made my earth quake and change forever when all the doctors took us in that room after she was born to tell us the ‘reality’. That second conference feels like it was yesterday and still remember where each doctor, nurse and surgeon was sitting, the smell of the room and looks on each one of their faces. I sat there in peace and strength this time, while Dan cried beside me. The strength and peace that at this moment I lack, but the majority of the time have. I sat there listening to all the undoubtable facts of her condition, how selfish we may be being and what effect it will have on our kids, and with so much clarity I told them, ‘You know, and I know she probably won’t make it past this first surgery or even till then, but I will not be the one to tell my kids that may resent her, that she didn’t make it or live because I didn’t take the chance to let her try’. We gave her a chance to try and fight knowing I would not deal with it all well, or perfect, but I knew God was on my side to give me strength to keep fighting, like her, even if I’m not the best at doing it sometimes. Because at that moment and even today with all the tubes, therapy, medicine, shots, doctors, surgeries, three kids possibly resenting me until they see for themselves, I can. BUT I could never die knowing I didn’t give her a chance to try to live. The thing is since I can remember I have always wanted to be a mom. Every time we went somewhere I had a baby and animal toy with me no matter where I went. So from the moment Tristan was born those kids have been what I dreamt of having, and doing. In that though I didn’t dream of having to go through what I have had with any of them, especially Faith. So yes I break, and yes I can’t handle it sometimes, and I fall into a funk. But for some reason it is unwarranted? Yes I have her still, and yes she is the most hilarious, spit fire, happy baby( except when she isn’t well), a light to anyone who is contact with her, and is so loving, but I still have to daily worry, and mess with the reality of what I have been dealt with her condition. And I am sorry that once in a while my heart and soul can’t take it. Because my kids and family are my life, from the moment I can remember, and still are today. So I ask for thoughts and prayers for me, that I may be stronger when I’m weaker, healthier when I’m sicker, and more patient when all I want to do is be in a quiet room with only the sounds of someone snoring and the peace knowing my family, my loves are ok. Thank you for listening to my heart.

In search of easier days

Ok here is the answers to this weeks not so fun surgery and issues. Months ago Faith went in the hospital with a raise in her creatinine even after i bumped up her fluids. We were quickly admitted and told it was most likely rejection since she was running fevers and her labs were showing it to be that. Well to find out it was a very serious UTI that had got up into her kidney and caused some damage, but don't think I've ever been so happy to here of infection. A test was done and found out that her bladder was refluxing up into her kidney when she peed (not her ureter, or a muscle she is used to using). A procedure was then scheduled to try to fix it (one of three choices, and deflux surgery being the least invasive). Then about a month ago she started running dangerously high temps and stopped eating and drinking(not like her), and again a UTI along with some other virus. Luckily this one wasn't to her kidney so the procedure was quickly bumped up to this last Thursday. In the scheme of things it wasn't as major surgery as the rest of the many she has had but still risky, and sedation (which i hate). The plan was to put a material that kind of made a speed bump for the urine not to get up into the kidney, and to put a stint in until the deflux medicine settled since the chance of obstruction is quite high. Well with the angle they were unable to put a stint in and they tried everything they could to. So now we wait for labs in the coming days to show if the procedure worked. If not, full open surgery will have to be done, which they don't want to do on her because of all the scar tissue and other issues that go along with such an invasive surgery. So in other words I'm trying to stay positive and not think about it, but still know we are not totally in the clear. That brings us to current. I am laying with her in my bed now since she wouldn't let me put her down to nap, one thing not like her. Then she is still screaming everytime she barely pees, which they said would be like that for the first few times she peed but we are now two days out, so second not like her. And thirdly and most un nerving she is now running a temperature. I'm going to let her rest and see how she is when wakes and make the call to the doctors. So please pray as i am for her