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

1 year KidneyVersary

So I wrote this last week but had issues uploading it. So here it is I sit here in total disbelief that today marks one year since I gave my kidney and Faith started her life with the organ she so dearly needed. At this time I was in the surgery room and Dan and my family were waiting on word how I was doing and trying to keep Faith happy and occupied while they waited to take her back. I remember waking up in so much pain as they rushed to get it under control before they wheeled me to my room. I feel like it was just yesterday when my bed made the corner and I saw Dan and my family and Darbi. I burst into tears, which was the most excruciating pain. It didn’t take long for the pain to get under control and I became, to say the least, very loopy. I laughed, my family laughed, and for the brief moment I didn’t feel pain or worry about Faith. Dan had been in such a hard place all day running back and forth between hospitals checking on both of us, all the while trying to keep it together. Darbi that night stayed with me so Dan could go back to the Ronald McDonald house to try to rest. During the night I started hurting bad again and finally after a couple hours of bladder pain I woke Darbi since I couldn’t reach the nurse button. Come to find out my catheter had moved and wasn’t draining. After that was fixed I was able to sleep, but the morning brought nausea and pain. I got up and tried walking, which my left leg was not working very well at all. I couldn’t go very far without feeling weak and sick. And on top of that I had gained 15 pounds in water weight in 24 hours from the fluids and surgery. I worked my booty off to walk the halls so I could get out and be with Faith. And a day and a half later I was discharged to drive to see her (which every bump HURT), and be with Tristan for his birthday. She was still out of it and in allot of pain when she woke up. The next few weeks was a juggling act of trying to not over do it (which I always did) and trying to get Faith healed and figure out what was going on with her. She of course had to go in for another surgery since she was retaining so much fluid in her abdomen that it ripped the inside stitches and put a drain in to pull out fluid, which took a few weeks to get to a point that it was manageable to go home. So now here we are a year out, first time we have had almost 12 months at home since she was born. We still have daily meds, bi monthly lab draws and monthly doctors visits, but the child we have now is nothing like the one before transplant. She is walking, talking, eating, drinking the amount she needs to, and is just as strong willed as the moment she was born. We aren’t out of the woods and will never have a normal child’s life but the life we have been given by God so far has been a growing, stressful, and beautiful life changing one for many involved. Over the three years almost since we found out about Faiths condition I have watched to many kids with the same disease pass away, get sick, hospitalized numerous times, and even go into rejection not even a month after transplant. It’s a scary road some days where I come to the reality that we are never going to have a normal life with Faith. But every day when I see her smile, laugh, love on her animals, scream for ice cream, and come running to me I realize I would take every minute with the known chance we may be in the hospital again, for the fact we weren’t even supposed to see the smiles, the laughs, or what she would grow up to love. So for that I thank God every day, even on the hard ones (which are very hard sometimes) because she is such a joy to my life and everyone who sees her. So as I mark this year by spending most of it in the hospital today talking to doctors and tests, I am thankful for every minute I’ve had with her, my family that has been so supportive since the day we heard the awful news, our friends that have been there and given support and laughs when I needed them, God for giving me that gift of faith to believe and trust him and for Faith, and for my husband who has been through this journey every second with me. Has cried with me, laughed with me over so many goofy moments with her, held my hand when I was in pain from giving life to our daughter, and holding my head up when life got too much. So here is to the next year and blogging amazing moments that come our way through the days and months to come.

Beena a LONG LONG time since I was able to sit and write but this is a REASON!! Back to two years ago, again can’t believe it has been two years. I was sitting saying goodbye to Tristan and Savanna at Mel’s house not really knowing how long they would be there, but again with what we were told I didn’t see it being to long. The thing is I was supposed to be induced, but true to Faith I just went into labor on my own that next morning. It was like she was listening and knew it was time to start fighting, and fight she did. Almost one whole year went by since she had to seen the inside of a hospital room again, 3 days to be exact, but that soon drastically changed again. She had got her transfer set changed on her PD catheter replaced 4 days earlier(which I really believe what happened) she got sick, and sick quick . We checked into Children’s on May 25th not knowing what we were going to deal with but hoping all the same that it was just something meds would fix. That would soon change when the two doctors walked in the room to tell us that on top of peritonitis she had a fungal infection which would require her to get her catheter removed because her peritoneum would may now be too scared to use for dialysis and so she would have to be put on Hemo until the infection cleared. The whole time the doctors were talking to us I held it together pretty good until they asked if I had questions, and at that point all I could think of was transplant. She had JUST been referred so I knew it wasn't a push asking if that could be an option instead of doing Hemo dialysis till the next surgery to put the PD catheter which may not even work. They said they would ask, and that is when we PUSHED. On August 23rd, a day before Tristan’s 9thbirthday me and her went into surgery to exchange my kidney to my baby girl. I was able to save my baby girl. I got flack from some people saying how I could take that risk when I had other children to live for. That was sickening to me, kind of like the doctors asking how much we would do to make Faith live. My answer ANYHTING I CAN. So tonight we are just hours from when she was rushed and cared for into this word. She was never welcomed but rushed and worried over. I think seeing that she had to show them it was worth it. She lies here tonight asleep, just done with her nepo shots and ready to celebrate her birthday with close family since the risk of sickness is way too high. See I kind of had a false sense of security when she had her transplant thinking that we would be in the clear but that is far far from true. The risk of cold, flu, or normal sickness is not a no biggy for us. Especially with the white counts being the way they have been with the meds she is on. I had a mom of another transplant child ask me if I was worried or scared to go home. I said no not much just need to get used to our new “norm” well little did I know how much it would really affect me, my husband and our relationship. Trying to constantly now worrying and praying God gives you strength, you forget to pray for your marriage, again something the doctors told us would suffer. We have tried really hard to not let it destroy us, but I would be lying if it was not very very hard. More than anything though we are about to hold hands together about to sing our miracle, and I again say miracle baby Happy 2nd birthday. Our Faith will be 2!! She is crawling trying to walk and such a joy you give so many around us I feel blessed to have been the mom to deal with this road God has given us because you can’t have another baby so special, happy, and so important to so many. Happy birthday baby girl I love you so very much and years from now I hope you can look back and see how much you were loved and prayed for. Mom

Onto another OR visit

Why is it as a mother when you hear your child cry and you are unable to hold them, you start to rock? Or you can be in a room full of commotion and noise, if your baby cries you hear it? Or when your baby sits in a bed screaming and crying you are able to not feel any of your own pain just to take theirs away? As much as I should be taking it easier there is no more I can do at this point. Because i can't not hear her cry, want to push the nurses aside and rock her when she screams or hold her even though it hurts so bad for me. I'm a mom. They have came in to give the anesthesia talk to take her back. Yesterday her incision started to drain first just a little bit but by the end of the day when I held her in my lap it soaked through the gauze, her diaper and the pillowcases. So to say the last it got worse. The drainage was clear for the most past and not to bloody so they aren't concerned that it is an infection which is GOOD. But the chance that the skin has separated from her muscle wall and created a pocket of fluid is a concern, also that the internal incision has torn. Her abdomen has went down some since yesterday but still very big, so much so that she is needing respiratory support and not giving her intestines room to work. Most of all the pain she is in. So here is to more OR time and prayers to start calm and rest. My sweet Booger

Dreaded Recovery

Between the medical chaos and the relationship issues I don’t know how much more this  weak body can take but Im sure it will keep on coming. With that I will keep on trucking along. Don’t really see how 6 days have gone by already but it has, crazy enough.

 Saturday I took it extra easy since I taught myself a hard lesson on Friday doing too much. Sunday though I didn’t have much of a choice. Faith is in the PICU and is sharing a room, which I didn’t think kids did in the ICU. At rounds we fought for them to give her food since the poor girl is starving and wants to eat, screaming to eat.  They also put in an IV in her head which she had been in restraints that night so something they were going to be pulling since Lasix was the only thing they were using the IV for. The plan was to just give Lasix every 6 hours instead. That was about 10 and the IV was not working when they tested it before pulling it. We also got the go ahead to feed her 30ml every 3 hours of pedia sure.  The moment they got the IV out we mixed a bottle up. When we brought the bottle bed side and she screamed a scream I’ve never heard before. She took it with two hands and ate like I’ve never seen anyone before. The poor baby girl was and is starving. The day went downhill from there. She stopped peeing almost the same time, and then she started running a fever. All along she has been holding fluid in her legs and feet and also her abdomen, but as the day went on it got more and more full. With that she got more and more increasingly agitated. Then with that her lungs got wet requiring her to need more oxygen. Still no pee and so all tests were run and x-rays. The first to come back was the x-ray which ruled out pneumonia. Next was the blood draws that we won’t know anything for two days.

We were blessed when she was first in the NICU to have and meet Ryan McAdams. He was a blessing to us then and throughout this past year has been too. He has kept in constant contact and prayer for us, made it to Faiths birthday, was there when we were admitted when she got sick a few months ago. Then Saturday night when he came to check in he came when she was at her worst fever, vomiting, screaming, swollen, and not peeing.  He prayed with us and asked if Healy had been in or knew this was going on. Within 30 minutes of him leaving low and behold Healy showed up. He ordered this and that and demanded the up in Lasix and started it, and the pee came! The fever broke soon after and she went to sleep. At that point the room was empty besides us but getting ready for the third child to be admitted. I went to lie down since again as much I tried not to, I over did it. As I lay in bed waiting for Dan to get back from checking on Faith I could hear a child being airlifted in, and that is such a horrible feeling.

I was awoken this morning very rudely for that matter when I realized I slept through my alarms to take my pain meds. So in other words I was hurting and hurting bad. My dear Faith when we got there was somewhat asleep and her swelling in her legs had gone down some and she put out a lot of urine last night.  As I sat there with her waiting on rounds my eyes noticed the new child in the room. You know with certain kids that the road is not good. While standing there they gave the family the talk about his chance of survival, knowing all too well what it is like to be in their shoes. They did two bedside procedures just while we waited for the doctor to come back and hearing the family screaming and crying in the waiting room today was enough to take what I had left away. With all the commotion with this dear boy, and I think Faith screaming in the back ground, was too much for the doctors so we got moved to our own room.

Faiths belly is so big it is shiny and is so uncomfortable for her. SO much so that the sutures from the surgery are popping apart. SO now it is trying to get that fluid off of her to relieve the pain and pressure and then we can start to feed her. Such a long hill to still climb.

As for me I am now on antibiotics with an infection in one of the sutures from surgery which I have to go see a doctor for tomorrow. So we both have quite a road still to go so prayers please. And way to much to report for just 24 hours holy smokes. Off to bed.

Surgery

Wow wow wow is all I can say. Still hasn’t really sunk in what has happened yet, but it has. It has now been almost 72 hours since I came out of surgery and gave my baby girl the life saving organ she needed. I went into surgery expecting pain but not quite pain like this. I have a pretty high pain tolerance and don’t like sitting still but this surgery didn’t really give me that option. From the moment I got admitted into the hospital my main goal was to get discharged so I wasn’t doing my best at taking care of myself. On Tuesday night I and Dan stayed with faith at the hospital in her room and my mom and Gus stayed at the apartment so they could get some sleep. I knew I wouldn’t be able to sleep very well because of just the thoughts of it all but added the fact Faith would be NPO after 1 am and she does not like being hungry. So sure enough at 4:30 I tried for quite a while but she wouldn’t go back to sleep because of her hunger so we got up and showered. By the time I was done Dans mom, dad, sister, hubby and kids were there and it was time to go. The day previous again was so insanely busy I didn’t lose it once but when I grabbed faith to say goodbye it all changed. After holding her and not wanting to let go we went and got checked in.

My dearest Darbi was there at the hospital when we got there so I had a few people to keep me distracted from IVs and the pre surgery talks. Jordan made it up too before so was able to say goodbye before I took the stroll to the cold loud surgery room. I don’t remember anything after them telling me to take a few breathes and telling me goodnight.

 

I woke up in A LOT of pain and them moving me to another bed to wheel me out of the OR. They were luckily right on top of it and got me comfortable before they got me to my room. I had to wait a while to leave recovery since there wasn’t a room ready and Dan was over with Faith. So I sat alone for quite some time, not sure how long though. When they finally took the last corner I saw Dan and started to cry, which was the worst pain EVER, but didn’t expect him to be there. Seeing my family was and always been emotional but pulled it together and asked how faith was. She has gotten the kidney and was attaching it right then. I became quite the comedian all drugged up. I was very comfortable and silly for quite some time but once I started getting tired, falling asleep while talking, the meds started to wear off and fast. The gas pain settled in my shoulder, my incisions started to ache and got really nauseas. It took a bit for them to get the nausea under control and pain. Dan went back to be with faith and sent me a picture of Faith, and she was peeing. Crazy the things we have looked forward to with her. And pee is a big thing. Darbi stayed the night with me and Dan went and stayed at the apartment. I of course got no sleep in between having to push a button to relieve pain since that was the only pain medicine I was on. Then about 4am I couldn't take it anymore and woke Darbi to get the nurse because my bladder felt full, even though I had a catheter in. When she empted me I had over 800mls sitting in there, guess there was a reason I was uncomfortable. Then the blood draws, and shots, and vitals kept me up the rest of the time. Thursday I made my laps and kept skyping Faith, even though she was so out of it.

So yesterday was my day to hopefully get discharged and I did. I made my laps to show them I could walk, ate food to show them I could hold it down and they gave the green light. By the time we got discharged it was 4 and Mel and my family and kids were here to see me so they just met me at the PICU. Getting off the elevator and seeing the kids made me lose it, very unexpectedly. I went to see faith which not for long because I quickly started to not feel so good. By the time I said bye to them and her and got a ride back to the apartment I was not doing good at all. I had the shakes, was cold, and felt sick. I had waited too long to eat or take meds and my body was telling me that’s for sure. The night was long but got better once I got the pain under control, so learned my lesson well.

 

Now as far as Faith the kidney is doing good and producing a lot of clear urine, creatinine level is down even since yesterday and she is the pinkest I’ve ever seen her. Today though she is pretty crabby, and uncomfortable. Partly because of surgery pain, other because of the fluid she is holding onto, and the bowels beginning to wake up. Which Faith of the two times she popped her lung it was because of gas pain, so to say the least she hates gas. I went back to lie down for an hour or so and during that time she pulled her tube out of her nose and puked. Guess her way of saying she doesn’t like it and wants food.  So at this point it figuring out what and when she can start to get food, and how to keep her comfortable since she is pretty puffy.

So right now I am trying to recover and take it easy, knowing the pain faith is feeling right now and no way to pick her up and comfort her, which is quite hard. But peaceful knowing I get to be here with her. God has brought us to it, through it, and now we just need the recovery.  

This picture was from today when our amazing NICU Dr faith had when were here last time. He has been in touch with us this whole time and came to see her and us today. Such an amazing doctor and man.

Transplant!!!

Not sure how you are supposed to sleep before a day like this. As Dan snores away next to me, annoyed I won’t lay down, I type. The therapy I need to maybe put sleep to my brain that won’t turn off. Today has been quite the whirl wind of pre op x-rays, and then dialysis, then getting admitted to the hospital. We were upgraded to the dreaded orange caregiver/inpatient necklaces which both I and Dan despise. So since we were running around like crazy, with doctors and nurses coming in and out, signing so many papers I felt like I was signing her away, I didn’t have much time to have it sink in or worry. This last weekend though was hard. Breaking down multiple times and just stunk in a slump. It may have been that I had so much to do, no time to do it, and the last time at home before it all began. So on Sunday morning at church when they prayed for us I broke down, but at the same time had peace, always how it goes, the teeter totter.

Fear wouldn’t be what I am feeling right now, or excitement for that matter, but more anxiety. See the thing is, is Faith will be here at Children’s Hospital and I will be at UW hospital. Although they are only about 2 miles apart, they may as well be across the state. So to break down my anxiety for myself…first it is having to say goodbye to her in the morning, second is the NEEDLES which is a BIG second, third is the complexity of what they are going to have to deal with, with my vascular system in and around my kidney which is “quite in depth and work” as the surgeon told me, so with that the added time he will have to operating on me, Third is waking up from anesthesia. See my mom had surgery a few years ago for cancer and when she woke up she was so sick and throwing up, which is even more painful when you have a new cut in your abdomen. Fourth is the pain so many people have gladly shared with me is my intestines waking up, fun. Fifth and most of all is being away from Faith during all of this, and not being part of it, or there. I will be in the hospital till probably Saturday so the thought of being so far from her, not comforting her or knowing what is happening at every second is hard for me.

Of course I will have to start my morning in tears saying goodbye till then but then I get to listen to the nice “what mays” the nurses and doctors have to tell you. It is all just so surreal still though that she is going to get a transplant tomorrow, from me, and she is going to pee!! Sounds kind of silly but having a baby that hasn’t ever peed but a few times right after birth is going to be amazing. On top of that though which brings me to tears each time is she won’t be stuck to a machine every day. She will start to grow faster, eat better, and be a real kid which was never supposed to happen.

So I leave with this. A smile. My daughter is amazing and strong and I in less than 10 hours will be started into a surgery to give her life again. She is such a blessing to me and so many around us. With her sweet smile, crinkle noses, “so cute” poses, dancing to every symbolance of music or a beat, her adorable voice, which we never thought we would hear, her tongue need I say more, and just her strength and joy through all she has been through. If I end up half as strong as her I would have accomplished so much. So here is to peace as I wheel away, patience while I have to stay away and joy to thought of how my sweet “booger” will flourish and change from what I am about to do. Thank God for little girls.

What 24hours can change

What 24 hours can change? I am still in shock of how everything changed. I will rewind a few days just to give perspective. This last weekend we were able to spend whole time at Banks Lake in Eastern Washington for Dans’ sister’s wedding, which was beautiful. We left on Monday morning to head back to the hospital to start our week again. See coming from home to here is bad enough, but coming back here from a short vacation is even harder. That evening after dinner Dan had to go home with Tristan for football camp, and to check on the house and animals. I have been trying my hardest not to keep track of the time we have been trying to juggle all of this, but this week it is beginning to be too much, and for the kids too. Knowing the kids are getting sick of it, and not having fun with it anymore makes it that much harder to stay positive through all of this.

So when Dan left that night I broke down. Being in situations like this I am sure it is normal to have times that you break down, and if you don’t I think you may go internally insane. Lucky enough though that the kids aren’t in school yet so they can be here with us and not trying to juggle that to. So I started my Tuesday morning pretty low already, and it also was the day I knew they were going to conference on all my testing for donating to Faith. Page, the Donor advocate,  every time I have called or got a call from her the last few weeks she always has had a disappointed tone to her voice and not good news each time, so I was quite a bit nervous waiting that day for the call on what the outcome was.

Well about 4:50 I still hadn’t heard anything so I called her, and again her voice switched to that tone when she knew who it was. I asked if they went over my file and if I was approved. She responded saying, ”Kami didn’t call you?”,  in a very confused disappointed way, and I of course I said no. Well she then proceeded to tell me that they did go over my file but I wasn’t approved, but not disapproved??? Ok what the heck does that mean? All she could tell me is I wasn’t approved, and they needed to do further testing, nothing else. I got off the phone with my heart in my stomach with no answer besides I wasn’t approved. By the time I got off with her it was 5 and couldn’t get through to any other numbers. So I had to sit with that all night not knowing why, what happened, what was said, nothing till the morning. So on top of already being low, hearing that, and being alone was enough to make for a long night.

The next morning I started calling right at 8, and of course no answers on any phones. She had her monthly nephrology appointment, and was hoping for some info to give them so maybe she could help me figure it out what to do if anything, but of course no calls back. Once dialysis was done my parents showed up and I had to do an interview for a newsletter on dialysis, and then they called. It wasn’t Kami who is the person who was supposed to call but the lady who sets up all appointments, she told me I needed to do a double kidney function test and that Kami would be calling. As we left Ruth, Faiths Nephrology doctor called and asked if I had got a call. She then hit me with the news, I was approved! They just needed to do this test to make sure I am left with the kidney that functions the best. When I hung up the phone the room began to spin and I felt like I was going to throw up. Less than an hour ago I thought I wasn’t going to be able to save my baby girl and now I’m approved and able to? A lot to take in, and in public for that matter. As I walked back to the apartment to get my things I finally got a call from Kami. She asked if I got her message, which I didn’t, and began to tell me why they needed to do the test and that both Children’s surgeons and their team had seen the files and approved it. So she said she was going to start looking at the schedule, which I assumed she meant for the appointment, but no…for our surgeries!!

So to put this in cliff notes, in less than 24 hours I went from panic not knowing how long I could handle being here and not knowing who would be able to be a match for her, or what was wrong with what they saw, or what I could do to change their minds. To waiting to hear the dates they found for the surgery for us. Amazing how God works, frustrating sometimes, but amazing all the same. So here is to finding a date soon!!

Just never ends...or will it?

UGH UGH UGH!! Well I should know better than to know I would get a break right now. The most frustrating part is that every time I am by myself things end falling apart. Yesterday I got the most monumental news, and by myself I was.  The craziest thing is that all last week once I heard that our cross match had a positive reaction, and needed more testing to see if it was to me or to her own cells, which happens, I’ve been stressed. So I waited and could have called this weekend, but was also scared to hear the answer. All weekend I kept having this dream over and over that Ruth walked in the room and all she said was sorry and I woke up with my stomach in a knot. Well yesterday morning I got to the hospital to start our week back in Seattle, and she called. Once she heard that I was in the hospital she just told me she would be down in a minute to talk to me. When she walked in the room she was wearing the SAME outfit that was in my dreams which was just way too weird, but then the words came out that it was a go, I was a match. To be honest I didn’t expect it and either did the nurses, which shared in the tears with me since I was alone to hear it. From there I of course asked what the next step was. They were going to talk about her that day and would be at least 5 weeks till surgery to let the vaccines she got the week prior build up antibodies. So I again waited all day to hear what was said and of course no call.

So that brings me to today.  Still alone I went over to the hospital in a mission to get some answers. I asked the nurses if they had heard anything and of course they didn’t, and so I called the transplant coordinator. That is where the day started to get not so fun. See Faith had been super cranky the last few days and for once she was in somewhat of a better mood luckily. When the nurse got on the phone I asked if she knew anything about how yesterday went or what the plan was. She said they went over stuff last Monday and she was eligible for transplant, but were waiting on her vaccines to be up to date and my results from UW to come back, which they hadn’t? Ruth had told me yesterday that we had to wait 6 weeks after the MMR/Chicken pox vaccine for surgery. Well the nurse then informed me she would have to wait 28 days  from the first shot, to get another one!! SO that would be another at least 4-5 weeks past July 10^th that we would even be able to have the surgery. After I got off the phone I felt so defeated and then Dan called to tell me he took Tristan into the Dr. since he was running a temp again, and he had pneumonia. Really!? Of all the times for me not to be there.  After that news I guess I needed more so I called over to UW to see what was going on, and what needed to happen for them to give Faiths doctors what they needed to get this done. She said they were meeting on my stuff, but they were not going to give the ok till I had a meeting with the diabetes doctors since I had diabetes when I was pregnant with Faith, and may not be willing to let me give her my kidney, again news to me. So again another punch in the gut. I proceeded to call the clinic and the earliest they could get me in was July 9^th, and until that meeting was done NOTHING could proceed.

 Faiths transplant nurse called me back with a list of a few more shots that she may need before transplant but non that were active so didn’t need to wait to clear. I then asked about scheduling the surgery for 4-5 weeks past the vaccine, but until they had UW clearance they couldn’t and on top of that it may take 2 months to get coordinating surgery rooms.

So all in all more then I could take for one day. It would be easier or more settling knowing she was ok in the mean time, but she isn’t. The hemo dialysis is just not working well for her. Her BP is through the roof, she is losing weight since she won’t eat as much since there are so many restrictions on what she can have, her blood levels are not stable, and to top it off it is being away from our home and trying to financially handle it all for who knows how long now. It is all a lot to say, explain or handle but then at lunch time I sat and got an unexpected visitor.

Savannas friend from schools mom tapped me on the shoulder when we were eating this afternoon, When I turned around I was shocked to actually recognize someone besides doctors, nurses or surgeons, but then I noticed the badge hanging around her neck and knew Her daughter was here. She began to explain how she had been having headaches and the doctors just said it was nothing. Well she pushed for an MRI and found out she had a brain tumor. They did and emergency surgery in Tacoma to remove most of it but were not comfortable so she was sent up here to have them remove the rest, which they did. I wept while she talked. This day from start till now has been constant blows and knowing I have NO control on what happens, and just pray what does happen, happens quicker than they are telling me. Not for me but for my kids and Faith. I have been asked if I’m scared of the whole surgery thing, but at this point my child’s health is all that I am consumed with luckily, and ask for prayer that this is what makes this whole process happen quicker than they have seen. Again just like they said the testing would happen in months, and it happened in a week for both of us. PLEASE!!

My work up day

Well I am sitting here finally able to see straight without the room spinning or the overwhelming urge to throw up. Today was day two of testing for the work up on Faiths donor tests. Yesterday was somewhat easy but not the case today. It started out with of course fasting and seems to be when you can’t eat is when you are the hungriest.  First on the agenda of the numerous appointments for the day was the blood draws and Glucose test. Ok again needles scare me bad but when I sat there watching vial after vial be laid out to draw to I secretly started to panic more. The thing is I didn’t want them to think I was not fit to do this or donate since of course surgery is a lot bigger deal. So internally I shook. Then the poke which all in all wasn’t as bad as sitting there while they filled 15 vials of blood and could feel my body getting weaker. When he was finally done I was told to drink the most DISGUSTING juice in less than 5 minutes. SO empty stomach, already shaky from the blood draw and now hitting my stomach was the nasty glucose. It was a strength I didn’t know I had keeping from passing out and puking at the same time. Didn’t keep me though from shaking and sweating. Quite an embarrassing thing in the middle of a packed lab room. All for Faith, All for Faith is all I could keep saying that kept me together. SO onto now another draw, and then, EKG, Chest x-ray, meeting with clinic, nurse, surgeon, CAT scan, and hopefully that will be what they need to tell me I’m a match.

The news I didnt expect

What would be the words for my feeling right now? Or should I say feelings. Scared, anxious, nervous, hopeful... Yeah almost every one. Let me rewind a few days. Once we got checked in last Friday night to Seattle they started her on fungal meds and IV meds and it continued that way till Sunday when they pulled her PD catheter. It never gets easy seeing your child wheeled away to surgery. We were told it shouldn’t be a very in depth surgery and should just pull out, so no intubation. Now there was of course the chance that it may need more than that and more would need to be done, but we lucked out and they cut the stitches and it just pulled right out. We were able to come see her shortly after, minutes feel like hours when you don’t know how things are going.

Later that day they got the results of what kind of fungus it was and it was one that was very well treated with a med that didn’t have quite the amount of side effects as the med she was on. The next night was my night to stay and let Dan sleep.  That next morning at 8 am they started to wheel her out of the room to place her temporary Hemo port. Now before this surgery was hard because there was such a sense of failure in my heart but today was hurt and pain and of course fear,,,which I tried not to over take me. The thing with this one is she would be intubated, and with Faiths’ lung condition and her history with being intubated just made my stomach turn. They of course have to come and tell you the risks and then I said my goodbyes, of course with no way of holding my tears in. I didn’t wait very patiently for them to call or let me know how things were because in a way I could feel that the way they expected it to go it wouldn’t, and didn’t. First of all we came back to the room after getting ourselves together and were told they were placing the permanent line. Now of course I wanted that and was not too fond of having a tube coming out of her neck, but the fact that the people that she was in the hands of didn’t tell us kind of unnerved me.

When we went back to see her she was really out of it and were told they had to pull the first catheter out because it wast o small and the other was too big and they trimmed it down but would be positional for flow. We had to wheel her directly to dialysis to try to see if it would work since she hadn’t been dialyzed for almost 48 hours. When they hooked her up to the machine, which is just scary it started out ok but then she started to scream and then where they cut her to place the catheter opened and started to bleed everywhere. Ok so the whole idea of it all was unnerving but then adding seeing what was going on in from of us just sent us over the edge. Dan began to break and had to get away from everyone because he lost it. See with both of us we had her health and comfort so much in our hands, a lot more then we realize at times, until the times are upon us. Thanks are to god the next day’s showed such improvement. She began to smile and eat again and Thursday evening we were discharged to the Ronald McDonald house. Sleep was not one of the benefits to being there but being out of the hospital setting was a relief.

So at this point she is 6 days a week, 2 hours a day on hemo, and is flowing good and not hurting her, besides making her not eat or move around for that whole time. So every day we wake up head over and start our day telling her not to eat and not move, not a good way to start the day for a 1 year old whose breakfast is life to her. It has been a feat to say the least.

Well here the news, to me, and everyone in our lives. Dan all this time has been the one hoping to be the one to give his kidney to save Faith, well we got the very shocking and depressing news he was not the match to her.

Doctors came in that next day to talk to me and how Faith was, our main thing the whole time once she went through this whole infection thing was we were not wanting to be putting her through a whole new set of surgeries just to tide her over till transplant, so why not rush it?

Well rush it is what we got. When we started talking to them and they told us Faith’s transplant workup would be pretty quick, but the biggest thing was the donor testing. This, they told us would be the shortest of two months which usually never happened, and may take 6. With how Faith has been doing, we didn’t have the 6 months to maybe find someone, which scared me. If Dan wasn’t then we would have to wait every time someone got tested, and no telling how long that would be. So on a thought, which had never even crossed my mind before I called my OB to check my blood type.  I AM AN O!

This is when the emotions start to collide. I was happy I was a match, scared I was a match, and mad Dan wasn’t. That was what he was going to do. Wasn’t it? All this while God has been quite a sneaky one with all of this. The moment we know it will be ok, he takes shows us where to hold fast. The moment we give up, he showed us hope. The moment we were not willing to give in, we gave her back to him and He gave her back to us tenfold.

But now I sit here at a crossroads mad, sad, and scared. Why me? Why could have it not been Dan, but then again it may not be me? That is where the teeter totter is. If I am not the one it will crush me, when I never expected to be the one to be the one to save her life.

As I said before it takes a minimum of months to do the work up on me for testing and come to find out Faith will be done on Friday and they will have the FULL conference on her two Wednesdays from now to put her on surgery books. For me, and most of you, the donor program is a foreign thought or idea so not really something most people know much about, much less me. Well it is a “Donor” driven program. So unless you call, make the appointments, push the doctors, and make this known you WANT this done, it doesn’t happen. SO I came into this pushing, shoving, punching and yelling. This is not something I could WAIT to happen. Again, this is where GOD had his hand. I got a call today. ALL and I say ALL of my work up tests and appointments will be done by Friday. I will know within 12 days if I am a match to save my daughter’s life. They are shoving all the appointments, and I mean allot of stuff I am SCARED of in two days. So in other words me and my FAITH will done Friday to wait together to know if I will be able to give her COMPLETE life.

So ANGER, SADDNESS, FEAR, HOPE, AND HAPPINESS fall into these next weeks for us. Yes it was news I did not expect, but as for the the life of Faith she has sure been the one to show us when not to expect what we want, but what God has planned for us.

So I ask now for Prayer for Faith in these next weeks to hold strong till that kidney come, and me, that I have FAITH that all things are in HIS plan. For I am scared and God has some way of making my fear of needles a reality.

Not the way I wish I had time to write

Well it has been quite a struggle since we came home from the hospital almost a year ago to find the time to write anything in any length besides a long to do list. But unfortunately I have found time to write. This last Tuesday Faith woke up fussy which is REALLY not her, so I vented her and she fell back to sleep. I chalked it up to gas and got on with the morning of getting the kids ready for school loaded and out the door. Well on our way home she started to gag and puke, and of course when I'm being followed by someone on my tale. After that she seemed ok and happy but things drastically changed. I went to go clean out her feed bag and mix up her meds, and she began to scream and from that point on she didn't stop. Even in her sleep she still whined and then the fever started. It hit so fast and so hard so I called the pediatrician to ask him first and he said it was probably the flu bug going around, which I hoped, but felt like it was more. And more it was. Once I got her connected to her cycler she began to drain and that's when I saw it first hand. Peritonitis fluid, or pretty positive it was. There was white fibrin looking worms all over her fluid so I rush a fluid sample down to Centralia hospital and waited as patiently as possible. Didn't at all help that the night previous the nurse called in last minute and got no sleep, so was desperately needing a nights rest after the crazy day and night, but that didn't happen. About 2 hours later I got the call that white cells were in her fluid so I would need to start the antibiotics I had on hand for this exact reason. Now at that point I thought she had screamed but was nothing like the way she screamed when I put in the loading dose of meds. It was all I could do not to cry seeing her in so much pain. After that 3 hours later I loaded all her cycler bags with different dosing of the same meds and started her on the cycler. The next two days were exhausting to say the least and didn't seem to make much improvement but not any worse. Friday afternoon, after of course I called asking why I hadn't heard what the other results were yet, I got a call back. "Come to the hospital now, she will most likely need emergency surgery"....I sat there in disbelief and then lost it. I could barely see through the tears or even hold myself up trying to pack for weeks or who knew how long. I felt so defeated I had been trying so hard to keep her healthy, I felt like I had failed. Basically what I was told is that she had yeast in her fluid, which is BAD! Dan and I drove up in silence and taking turns breaking down, and then I was numb. It was like I was outside my own body, in a terrible nightmare, back at a place I never wanted to be again until transplant. But we were here and having to hold ourselves strong and together while doctors filtered in and out not really doing anything to comfort her as she screamed, and cried burning up with a fever. Things finally got sorted out and Tylenol was given and she started to fall asleep and was told besides them starting an anti fungal medicine they would not know the plan till morning. So again hurry up and wait. That was a start to a night that I wouldn't wish upon anyone. I tried sleeping on a small little couch with Dan but she started to cry the moment I thought I may be able to go to sleep. As she cried, she started to scream, as she started to scream she started to shake, and I tried everything to calm her down, stop her shaking, and not break myself. She hadn’t ate in hours which is not ever what happens but we didn't pack formula. The next morning after hours of waiting and hoping for good news the doctors came in with the news, bad news. They began to say that there was no choice and the catheter would need to be removed. The hope was to place the hemo catheter at the same time but that probably was not going to be the case because of the infection and chance of it causing infection in a direct blood line. Then they began to tell us how long we would have to be in the hospital and how long she may have to do hemodialysis because her peritoneal cavity may be to scarred from infection to use again. Again not what I wanted to hear or what I even expected. Being hit with that blow and not expecting half of what they said, I broke down. I felt bad for the doctors because they didn't know what to say and I did try my hardest to hold it together but thinking of how long I would be away from home again and missing all the events I was planning on attending made me break. As the day went on we heard that they would have to do two different surgeries, which then turned into three and no idea how long we would have to say in hospital, but for sure would have to do at least 5 days a week of hemo dialysis at the hospital. Well all fine and dandy if we didn’t live 2 hours away. So now it is the juggling act on what we do, how long it will be, what will we miss and what will we have to do to sort it all out. I hate this place because it is so far from home and brings no good feelings at all, but the nursing staff is one of the most amazing group of people. In a time like this they do an amazing job to do what they can for you, and for that we are so very grateful. So we now sit and wait to hear what the next step will be, when it will be and what to expect. So hurry up and wait and put on your bungee cord because we are going jumping again.

I just had to post and take the time on my phone to just share how I was feeling. It is crazy how emotional I am right now. Anyone who really knows me, knows I try so very hard not to cry. Well crying I am. As I hugged Dan tonight I lost it. It was the first time I had seen Faith here for Christmas. When they first told me she wouldn't survive it was the first holiday I was trying to see how I could cope with out her being there. So on the eve of that day all I can say is I sit here in tears in amazement and she is what I get to see in the morning. Smiling, crinkling the paper and looking into my eyes. Our miracle is here!! She is here! Merry Christmas

New Phone New Life

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.