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.