#6 Kaden's baseball tournament/ Year two- post delivery- Part 2 (March 2003)

               This past week, I was able to attend Kaden's state baseball tournament.  It was a very humbling and rewarding experience.  I wake up every day praying that I will have the ability to fulfill my responsibilities and give my kids opportunities to grow and thrive.  That I will have the mental strength to manage and push through my pain, nausea, and other symptoms, the energy to function, and the cognitive faculties to think clearly and deal with all that life brings.
              On Monday, I knew I wasn't in good shape and I had to figure out how to get Kaden to his 3 day baseball tournament about a 1/2 hour from our home.  He needed to be there at 1pm until 3:30pm and from 5pm to 7:30 pm.  That doesn't seem too difficult, but unfortunately it's very difficult for me.  I am too sick to drive most days now and if you can imagine chasing your three yr old around for 8 hrs in 95 degree weather while you have the flu and a cold and your muscles and joints hurt like you just worked out for the first time in years, that's a little piece of what it would mean for me to take my sweet little Logan to the baseball tournament.
               I usually take all my boys to games, but they're usually only a couple of hours long and I can push through the symptoms for that long, but after time my body will completely crash.  I'm constantly trying to figure out how to save some strength and energy to push myself longer.  If I felt well enough to drive somewhere in the morning, chances are I wouldn't have the ability to drive home when the time came.  If I had Logan with me without someone's help, I would be struggling to walk after a few hours because of the energy production needed to lift and chase him and possibly need at least half the following day to recover enough to function again.  Depending on how hard I push myself sometimes I'm down and out for days.  I have to choose my activities very carefully and pace myself to try to keep that from happening.  It happens a lot though because I still want to keep up and do what normal people do.
               I knew that I had to figure out how to get Kaden and myself to the tournament and I had to have help with Logan.  Teagon is old enough to come with me or help out wherever Logan goes.  I felt such sadness and emotional pain as I struggled with the reality of my situation.  I really can't drive my son a half hour from our house?  I can't take Logan out of the house for an extended period of time?  The other problem was the high chance of thunder and lightning storms in the late afternoon.  If someone dropped us off at 1 pm and a few hours later, it started pouring rain, we would be stranded, with no car until Matt arrived after 6 and we wouldn't have a way to leave in between games so we would be there the whole time out in the scorching sun.  This was causing me a lot of concern and anxiety as I tried to figure out a solution.
              I had to ask for help. It's not easy to give up control and ask for help with something that you feel you should be able to do when that ability has been taken from you.  I can't express how grateful I am for my family and freinds that helped me to give my son this opportunity.  It was tough for me to accept the reality that I had no control over the situation and couldn't do it alone no matter how bad I wanted to or thought I should be able to.  I've gotten really good at putting on a smile and acting as normal as possible when these kinds of situations come up, but when I find myself alone for a few minutes, tears run down my face.  I have lost the ability to function like I once did and it's getting worst.  That's hard for a 31 yr old woman to deal with.  It's natural to grieve over what we've lost and sometimes the tears just come, but we have to keep going, we have to choose to see what we still have. I know through the grace of God and kindness of others I'll get through it somehow and continue to experience lots of joy in this life that I've been given.  Looking back, I'm amazed that we got through the baseball tournament and am so humbled at the love we've felt as people gave their time to help us.

               There are many moments when we're just living life like everyone else does that I become so overwhelmed with gratitude that Kaden is here and that I get to have him in my life because there was a time when I wasn't sure if that would be the case.  As the days went on, Kaden's health began to deteriorate.  He went from just needing oxygen to completely depending on machines to keep him alive.  One day, the nurse handed me a paper to sign.  I was completely overwhelmed as I realized what it was.  It was a consent form to allow Kaden to be given blood transfusions.  As I read through the risks, I felt so much sadness, but there was no alternative.  His blood had lost all the crucial properties needed to perform it's vital functions so it needed to be completely replaced.  I am too sick to donate blood, but Matt goes in several times a year to donate because we will always remember what that gift meant in our fight for Kaden's precious life.  A couple of weeks ago, Matt got a call from the blood bank to come in first thing in the morning to donate blood because a tiny baby was in need of Matt's blood type and specific markers found in Matt's blood that were crucial to the babies health issues.  I felt such love for that little one and his family and was so grateful that we could help them in their time of need.
              I sat with Kaden every single day.  He was so sick that for a time I couldn't even touch him because his vitals were so unstable that any stimulation held was a serious risk.  One day a nurse, sensing my deep sadness as I turned to leave for the night, took one of the small, white hospital rags from Kaden's side and told me I could keep it.  It might not seem like a big deal, but this simple act of kindness meant so much to me.  I snuggled that rag every night, in the beginning it even smelled like my sweet little boy and it was incredibly comforting to have a little part of him with me always.  Kaden was in critical condition, he had to have one on one care 24 hours a day.  The nurse was assigned to him for a twelve hour day shift and a twelve hour night shift, they stayed with him, alert and ready to act when needed to keep him with us.  I am so grateful for the nurses who gave him such loving care.  So often, one problem would improve and then three other problems would occur.  I felt so discouraged as I would feel such hope one minute that his condition was improving only to find out something else had gone seriously wrong.  I've never prayed so hard in my life as I did during that time.

               As his condition continued to worsten, there was a time when the Dr. told me he didn't know if he was going to make it.  I was so fearful that the time would soon come when the hospital would tell us it was time to turn off the machines.  We asked the doctor if we could give him a blessing and Matt and his Dad were able to do that for him.  Within a few days, Kaden's condition began to improve and we were finally able to hold him in the days ahead.  I'll never forget how it felt to hold him close.  I can't put into words what it meant to me the day I got to take him home, 20 days after he was born.  He is an amazing, happy, healthy little boy.  Looking at him now, you would never know what the first weeks of his life looked like.  I am forever grateful for the silent strength that he exhibited during that time, I know that he came into this world with the knowledge that he would experience pain and suffering and fight for his life.  I am forever changed by his courage and strength.  He taught me early on that the way we deal with the hard times in our lives matters and can make a difference to those around us.

             









               I feel such love and compassion for the families that don't get to take their babies home.  I know that they are the strongest of us all to be given such a heart wrenching, shattering trial.  I know that miracles happen, this is one of many that I have been blessed to witness, but as sure as miracles can and do happen, sometimes they don't happen because of reasons we don't understand at this time.  God knows us individually and he loves us more than we could ever comprehend.  In his infinite wisdom, he allows to go through hard things that are most definitely not fair. This happens not because of anything we've done wrong to bring it upon ourselves or because we don't pray enough or do enough good in life.  It happens because of matters that we can't comprehend that only God comprehends.  Bad things happen to good people, but I believe that everything happens for a reason.  We don't need to fear when things don't go the way we want them to go.  God is aware and constantly finding ways to bless us and help us along our way, no matter what life brings.  All darkness will eventually give way to light if we choose to see the light and hold on to it with all our might.
               

#5 Year two- Post Delivery- Part 1 (March 2003)

               This has been a hard post to write, these memories bring up a lot of emotion and pain.  As I was writing I had a really hard time remembering exactly what happened because I have hidden these memories deep in the depths of my mind.  Three years after this experience, I was asked to speak and answer questions about my pregnancy and delivery in a Child Developement Class at BYU-Idaho.  I was totally shocked by what happened.  I stood at the front of the class with two other women who were also there to share their experiences.  As we took turns answering each question, I was blown away at how different their experiences were compared to mine.  Their responses were everything I had expected my delivery and the days following to be.
               I was horrified at the physical and emotional reaction I had at that moment.  I completely broke down in front of the whole class and I couldn't get control over my emotions.  I am a cryer by nature, but this was something entirely different.  It felt like I had never properly dealt with the trauma that myself and my baby boy had experienced and in that moment it all boiled up to the surface.  It took me a few days before I could get myself together.  It's amazing what the human mind does to protect us from painful memories, but sometimes its too much to cope with and we are forced to deal with our pain.  I know what that feels like all too well as I have struggled to maintain some sense of normalcy while living with a life shattering illness.
              The days described in the next few posts were some of the hardest days of my life.  As I wrote this, I wondered if it was too personal to share and I'm still not sure about that...But as the tears fell in remembering this devastating time, I was filled with a hope and peace so strong and comforting. I've been through some really hard things and just as I survived them and came out stronger, I can and will survive what I'm dealing with in my life today.  I've also felt such love and gratitude for my three little boys while writing this post.  They are living proof that miracles happen and because they are here, I know there is always hope.

               Towards the end of the delivery, a team of nurses from the neonatal intensive care unit came into my room to be ready to help Kaden in case his lungs weren't fully developed.  The instant he came into this world, he was surrounded by medical personnel in a blur of movement.  I looked on in panic and shock as they examined him and cared for him.  Matt finally brought him to me and I got to hold him for an instant before they took him from me.  They explained that he had passed the APGAR test with flying colors, but they were still taking him down to the NICU for a few hours to moniter him, just to be safe.  I wish I could have been in a better place to appreciate my time with him more at that time, I was in shock and so confused about what was happening around me.  I was so scared and disoriented.
               During the short time that I held Kaden, I gazed at his tiny little face, he was bruised and broken from the traumatic delivery.  His nose was smashed to one side and a dark purple bruise had appeared in between his eyes and up his forehead.  It was all a blur, it felt like a dream that I couldn't wrap my head around.  I couldn't understand why my baby looked like this (these are the feelings I felt at that moment in my state of shock...he was still the most beautiful baby boy I had ever seen).  He weighed 5 lbs 15 oz and was 18 1/2 inches long, he had a head full of dark hair.  He was very alert and bright eyed and I'll never forget how he looked up at me.  I noticed that with each breath, his little chest pulled in a little bit right in between his ribs.  The doctor thought his lungs were a little premature, a steroid shot is usually used to help speed up the growth process and he would be fine in no time.  They took him at around 1:00 AM and told me they would bring him back in a few hours.
               After they took him, the doctor stitched me up and showed me the placenta.  I'll never forget it.... It looked like a huge, thick piece of steak with a huge tear starting at the edge and going to the middle.  So that is what a placenta abruption looks like. That's what started all this trouble. I still have no idea how or why it happened.  I was told it usually happens to drug addicts...I didn't understand why it had happened to me. They finally got me to a new room and I tried to sleep.  I don't remember exactly the order or times that things happened, but at some point Matt was able to go down with our families and see Kaden.  I was so out of it.  Every hour or so, a nurse came in to check my vitals so I didn't have a lot of luck with sleeping.  I had lost a lot of blood and my low blood pressure was being closely monitered.
               As the night went on and the shock began to wear off, I became more and more aware that my baby was still not there.  When I would ask, I was told he was fine, I needed to rest, and they would bring him up in a couple of hours.  By morning, I was really starting to worry.  Matt called the NICU down stairs to see what was going on.  They said it would be a few more hours.  I couldn't walk yet, I wanted so badly to get to him.  Finally Matt took me down in a wheel chair.  The NICU is in the basement level and I was up several floors. It seemed like it took forever to get there.  When we got there I think he was only on oxygen at that time, but I don't remember a lot of details, I think it's too difficult to remember stuff like this.  All I remember is that I couldn't hold him and I couldn't take him with me.  I still felt so lost and didn't understand what was happening.  At one point I remember examining myself in the mirror.  I was mortified at what I saw, there were broken blood vessels and bruises surrounding my eyes.  My face seemed hollow and pale. I just didn't look right. This wasn't the same girl I had seen looking back at me couple of days earlier.
               I don't remember when we first found out that Kaden was in more trouble than they had originally thought.  I do know that they took him down immediately after he came into the world and began treating him for premature lungs.  What they didn't realize at the time is that he had a much more serious problem brewing.  It turns out premature lungs were never the problem.  As Kaden was coming into this world he had taken his first breath a little too early and some amniotic fluid got into his lungs.  This is a pretty common occurrence and can usually be resolved within a few days, but in Kaden's case, the doctors didn't realize it had happened at all until it was too late. Pneumonia had taken over his tiny lungs and put his life in serious jeopardy.
               I was in the hospital for a few days.  I spent as much time as I could with Kaden, at that point he was hooked up to some machines and we couldn't hold him at all, but we still didn't know exactly how bad the situation would get.  As the time came for me to get discharged from the hospital, we were shocked that Kaden wasn't coming home with us.  We were given the opportunity to stay at the Ronald McDonald house in order to remain close to Kaden.  One thing I remember happening the first couple of days was pumping colostrum.  I wanted to nurse my baby when the time came so I had to pump so that my milk would come in.  The colostrum and eventually the milk would be frozen and given to Kaden as soon as he was well enough to have it.  I still remember the first time my milk came in.  It's a feeling I'll never forget because I was so sad that I didn't have my baby there.  It was in the middle of the night that first night at the Ronald McDonald house.  I was in pain and shocked because this was my first child and first experience with having my milk come in and all I could do was pump to relieve the pressure.  I longed to hold my baby close and comfort and nourish him.  We didn't know how long I would have to pump to maintain my milk supply for Kaden when the time came, but it seemed like forever, I just wanted to hold my baby so badly.
               During my difficult pregnancy, I was told to hang in there because the second the baby was delivered, I would feel better...The symptoms would go away.  Some of the symptoms did go away, but new ones came.  Ronald McDonald house was a difficult time, I was supposed to be resting, but I couldn't stand to be away from my baby so I was at the hospital most of the day, every day.  I was losing weight so quickly, within a couple of weeks I had not only lost my pregnancy weight but ten extra pounds.  I remember curling up into a ball on the bathroom floor one night because I was throwing up and experiencing significant abdominal pain.  Matt was working two jobs at that time so he would leave early in the morning and get home late at night.  He would come straight to the hospital to see Kaden for a couple of hours and then we would go to the Ronald Mcdonald house to sleep.  About a week after Kaden was born Matt got into a car wreck, thankfully no one was hurt, but we lost our second car so I had to take a shuttle to and from the hospital everyday.  It was a very difficult time, we were both just trying to survive.

               One day I remember vividly walking into Kaden's NICU room and feeling complete dispair and shock as I saw that his condition had taken a turn for the worst.  I'll continue from this point in the next blog.  It's so emotionally draining to think about these sad times so I'll take a break and continue with the story in a few days.  Thanks to everyone who's reading my story.  I love you and appreciate your love and support.  I hope as you read these things you'll be given strength to get through the difficult things in your own lives.
             
             
                         

#4 Year two- Delivery Part 2 (March 2003)

              One of the first reactions I had when I found out I had a chronic disease was to withdraw from the people in my life. I'm not sure why...  I think its just human nature to withdraw and survive. It's too emotionally painful to talk about or think about and unfortunately people are quick to judge what they don't understand and can't see or explain.  I strive to avoid that negativity, but as time goes on, its too physically and socially painful to hide the truth. Also opening up about it makes it real and it means its not going away.  I know if I don't share my story, no one will ever understand or truly know me and I want to be understood and loved for everything that I am. It's difficult to feel this sick everyday while looking completely normal on the ouside.
               I'm so grateful for the kind words of support I've been given since starting this blog.  It makes me feel so loved and less alone.  When I have to ask for help or back out of a commitment because I'm too sick on a particular day, I don't have to feel so bad and uncomfortable trying to explain what's going on or feel like people think I'm just lazy.  I would never let anyone down in any way that I have any control over, in fact most days that you see me out and about with my kids or doing anything at all, I am experiencing symptoms that would put most people in bed for the day.  I function with symptoms worst than the flu everyday and the days when I actually can't get off the couch, I'm experiencing a level of symptoms that would send most people to the emergency room or at least cause serious concern.  I'll explain how I got to this place in the blogs to come.
               One thing that I hope this blog brings to people is the understanding that just because you can't comprehend or imagine how sick someone is, doesn't make them any less sick.  I know it sounds too awful to possibly be true, but sadly, it it true.  Underneath it all, I'm still a regular person, just like you, I'm not a hypochondriac, a germ phob, or hungry for attention.  I'm a friend, a wife, a mother, a daughter, a sister, a human being.  I had the same hopes and dreams you did as a child, I have the same hopes and dreams for my children that everyone does.  I laugh and cry and feel stress and hope like everyone else, but I am also very very ill.
               I didn't do anything wrong to deserve this or bring it on, it just happened, it's what I've been given and as much as I change my diet, pray, scream, hope, and search for help it is still here.  I hope with everything in me that I won't be this way forever and my biggest fear is that it'll keep getting worst.  As much as I've become accustomed to it, I still feel with every fiber of my being that it is wrong for anyone to suffer this much.  I choose to be positive everyday and I choose to find the good a midst the suffering.  Believe it or not I am happy inspite of the illness, when you ask how I am and I say "good" I really am good because I choose to be, not because i'm feeling better.  My health doesn't define my life or level of happiness.  I fight everyday just to survive, but I know I am strong enough because I wouldn't be given this trial to bear if I wasn't.  I love life, I don't take the little things for granted, and I love the compassion that I feel for others in all situations. I choose to focus on the good my illness brings to me, not on what it takes from me.
               I hope as I open up about my situation, I will bring peace to others dealing with the tough things in their own lives and also find some peace as I try to figure out how to cope with my situation for the unforeseeable future. It is my greatest desire to give my boys consistency and happiness while dealing with this very unpredictable and devastating illness and all the struggles that go along with it. My love goes out to everyone else out there who suffers, we can do this, hold on and don't ever lose hope.                
              Going back to March 2, 2003...This story is really traumatic and sad.  It was so hard for me to write and relive, but it is part of my health journey so I'm going to share it.  Please know that it is very close to my heart and still hurts and brings tears to my eyes as I think about it, but I am incredibly grateful for the outcome and would go through it again for any of my children.
               After recieving three injections to stop the contractions the night before, I was in a great deal of pain and having contractions a couple of minutes apart.  As we headed to the hospital, I remember we had to stop and get gas.  That was a rough trip for me, the pain was getting worst and I was trying to stay calm and get through each contraction.  At the hospital, I was sent to the ER because I was only 35 and a half weeks along.  Probably just a crazy pregnant lady who thinks she's in labor.  They hooked us up to the moniters, the baby was still doing great, the contractions were coming like clockwork, and I still wasn't showing any signs of dialating or progressing in any way.  I remember just squirming in pain and feeling so scared and confused that I was in so much pain, but not in labor (these couldn't be the braxton hicks contractions I had read about) . There were other patients all around me separated by curtains on either side. I remember how hard the ER bed felt as I longed for any kind of relief.  They were going to send me home, but I was experiencing so much pain that they finally decided to admit me even though they had no idea what was going on.
               I was taken to a private room and given morphine.  I was told that this would ease the pain and either relax me enough to slow the contractions or help the labor to progress.  My parents had traveled from their home in Oakley, Idaho to Boise and were planning on getting to the hospital as soon as possible.  As the morphine kicked in, I was feeling a little more comfortable and expecting to be sent home soon because I still wasn't in active labor so I had Matt call my parents and tell them to go ahead and head to our house, we would probably be headed home soon.  I remember joking a little bit with Matt at that time and feeling some relief that the pain was dissipating.  Then everything changed in an instant.
              I felt a huge gush, and told Matt, "I think my water just broke."  To our immediate horror, we discovered that it wasn't water at all.  I was hemoraging.  Matt ran into the hall and called for help, within seconds I was surrounded by nurses.  There were nurses everywhere, placing IVs in my hands and arms.  I can only describe it as immediate commotion and chaos all around me and everything was moving so fast, but seemed to be in slow motion at the same time.
               So this is what happens with a placenta abruption... I had read about this in my pregnancy book, but it wasn't supposed to happen to me.  We're so thankful that they admitted us instead of sending us home or it would have happened in the car.  Now I had to deliver the baby.  They broke my water and started the petocin.  The pain from the placenta tear was constant and as the contractions became worst, I was drowning in pain, it was as if the world was covered in a haze and spinning in a blur around me, my family had arrived and watched in helpless horror as I whispered softly that I was going to die.  I don't remember speaking much except to ask that my little sister and sister in laws leave the room so they wouldn't feel afraid to have children.  It almost felt like I was going in and out of consciousness as I had completely lost the ability to manege the pain in any way.  I was unable to receive an epidural at any point because the blood loss I had experienced had caused my blood pressure to plummet.  This went on for hours as my body slowly dilated and effaced.  I do remember begging the doctor to do a c-section, but amazingly and thankfully the babies vitals held strong through it all so they chose not to do one.
              This ordeal began at around two in the afternoon (not counting the previous hours of contractions before the abruption). I had lost all track of time and logic, as the labor pains spread into my back, I felt as if I had nothing left and that if I closed my eyes, I would be engulfed into nothingness and just cease to exist.  The medicine they had given seemed to offer no assistance what so ever. I was beginning to lose all hope, without any relief in sight when the men in my family and the Dr who was treating me gathered around me and asked God to bless the baby and me with comfort, peace, and the strength to get through the situation.  Then the Dr gave me a pain medicine through my spine where an epidural would normally be placed and for the first time in hours, I was able to rest a little, if only for a few minutes.  Finally right after midnight, I was dilated to a 10 and 100% effaced.  I was beyond exhausted and the pain was excruciating, but as each contraction came, I found the strength from somewhere within or more likely from someone above to deliver my precious Kaden.
               Matt cut his umbilical cord and they placed him in my arms.  I know I was in shock at that point because I didn't know what was going on, I was so overwhelmed and confused.  I do remember Kaden's eyes looking up at me and locking with my own for a split second before they rushed him out of the room.  I think he knew I would need that memory to get through what happened next.  I didn't realize that it would be weeks before I held him again or saw those beautiful, bright eyes.