Living without Alex 1-27-07

SATURDAY, JANUARY 27, 2007 04:26 PM, CST

This post was moved from Alex's blog


One year ago at this very time my body began the process of birthing you. As I sit here holding your brand new brother in my arms I still hold a hurt in my heart. All the hope and joy we felt one year ago still haunts me. We had no idea what a roller coaster ride we were in for and today it's all very surreal.

Thank you Alex for helping your brother into this world safely. We can see your spirit and determination in him already. Thank you for the gift that you and god gave us. A part of you lives on...

Happy birthday sweet boy. I love you and miss you to the depths of my soul.

Living without Alex 7-21-06

FRIDAY, JULY 21, 2006 12:15 PM, CDT
It has come to my attention that folks are feeling a bit cut off since I abruptly ended this journal. Although I continue to feel that this chapter of our lives must be closed I would like to invite you all to keep up with us in a different way.

I have been chosen to be a journalist for StorkNet online. So I invite you to follow our new pregnancy on that site.

www.storknet.com

Scroll down to the bottom where it says Journals and you will find "Kat's pregnancy after loss journal". I update it weekly.

Thank you all again for your continued support!

living withought alex 7-9-06

SUNDAY, JULY 09, 2006 05:54 PM, CDT
This will be the final entry to this site. I want to thank everyone who has been reading this for the past few months, your prayers, your tears, your love has not gone unnoticed. People we know, and some we don't have been so touched by our sweet angel boy and our journey and we have been honored to share it with you.

In conclusion, a little something I wrote.

Sometimes........

Sometimes I am scared, scared that I will lose again, scared that my memories will slip away.

Sometimes I am angry, angry that such a beautiful person was taken too soon, angry that I didn't get to watch you grow up.

Sometimes I am grateful, grateful that we had those weeks with you, even though we couldn't hold you, you were there within our grasp showing us wonders that we had not yet been worthy to experience.

Sometimes I am sad, sad because I miss you so much my heart hurts.

Sometimes I am guilty, guilty because I might have been able to change things if I had only known

Sometimes I am happy, remembering how your strength and spirit filled the room, seeing you do it your way regardless of the "rules".

Sometimes I cry, I cry tears of sadness, I cry tears of heartbreak, and every now and then I cry tears of gratitude.

Sometimes I hope. I hope that I was a good mother to you even though the obstacles made it difficult for me to be a proper mother. I also hope that I can be half the person you were.

There are a lot of "sometimes". But there is one "always" and that is...... Always I will love you.

I know that time in heaven goes so fast, by the time you turn around to see if I am there with you, I will be. You feel no pain, you feel no fear. When I look up at the night sky and see that one brightest star, I imagine you sitting on it looking down on us and giving us your strength that we can go on without you. I may never understand, but at least I can wake up each morning knowing that nothing can ever take you from my heart.

I love you Alex, and I misse you terribly. For once in my life I'm not afraid to die, when it's my time someday I know that I will forever be with you again.

Alexanders birth story part 4

Part 4:

Please read the previous 3 entries before this!

The next day my mother arrived with the children so they could see thier brother again before we headed to Minnesota the next morning. It was probably the least stressfull day of the whole adventure since they didn't do anything to Alex, only let him rest and spend time with us. We got a room at the Ronald McDonald House that night and were urged to take advantage of what would be our last night of decent sleep in what turned out to be a very long time.

Monday morning we arrived at the hospital at 7am to spend time with Alex before his scheduled 8am flight. Unfortunately the flight team arrived EARLY and we got nothing more than to say goodbye to him and stand back as they worked to prepare him for his flight. Equipment had to be changed over, sedation begun, reports read, checklists checked. They loaded him once again into an incubator and Alex left for the airport for a ride on his "private" jet.

Craig and I left to start our own journey. We drove to my moms to pick the kids up and bring them home to get clothes and belongings for what we figured would be a couple weeks' stay at grandmas house and Craig and I loaded up our clothes and stuff. We brought the kids back and hurried back out onto the road to go to Minneapolis. The trip was fine but we eneded up getting lost and ending up across the river from where we needed to be because everyone assumed that a newborn would be in the NICU, he wasn't he was in the PICU which was about a mile away in a complete different building! We finally arrived at the right place at I beleive 6-7pm. Unfortunately we had by then missed the doctor but another cardiologist offered to go over with us Alex's condition and the game plan for him. We learned more details about the extent of Alex's defects and were told that they would do a procedure called heart catheterization the following day to get an even better look and then surgery would be scheduled. Alex would be the one in charge of when surgery would be, they would follow his lead but the sooner the better.

The hospital made arrangements for us that night for a hotel room nearby and put us on the waiting list for the RMH, we were told that people sometimes wait WEEKS to get into RMH. We didn't really care, we'd sleep in the car if it came down to that. We just couldn't worry about anything aside from Alex's life at that point.

To read the day by day journal entries I made while Alex was in the hospital click the "Alexander's life" link to the right in the labels section.

Alex's birth story part 3

SUNDAY, JULY 09, 2006 05:21 PM, CDT
Part 3:

Please read the 2 previous entries before this one!

The drive to Marshfield seemed to take a year. On the way we called everyone we knew and asked for prayers and told them the news, Alex probably wouldn't make it to Marshfield.

We spent the drive in silence. The radio was on but the only song I heard was "Jesus take the wheel" since it was repeating over and over in my head. I kept using it to push out the thoughts that were trying to invade, the thoughts of my baby being dead. How was I going to do this?!

About 30 minutes outside of Marshfield Craig's phone rang. I looked at the number and didn't recognize it. I knew what that meant, it was the hospital. Frozen with fear I handed the phone to Craig. I don't think I took a breath until he hung up and told me the news. Alex was at the hospital,. intubated and doing FINE! I again called everyone to let them know the good news! Hope started to creep in again and I don't think I stopped grinning and talking Craig's ear off the rest of the trip.

We arrived at the hospital and found our way to the NICU. We were greeted there by a very tall doctor who introduced him as the neonatologist caring for Alex tonight, he told us that he had gotten him intubated with no problems and started a medication to help his heart. The cardiologist was in with him now doing an echocardiogram on his heart and would see us in the waiting room as soon as she was done.

We went to the waiting room and spent 30 nervewracking minutes waiting to hear for the first time, what was really wrong with our son. Again time seemed to stand still.

Finally she came in and drew us a picture of what was wrong with Alex's heart. She told us our options and we made arrangements to transport him to the U of MN since this hospital he was at didn't preform pediatric cardiac surgery any longer. We were led into Alex's room that he shared with 3 other babies, at 4 lbs 14 oz he was the biggest baby in the room and the only one in an open bed. Aside from the ventilator he looked actually out of place there. His color was much better, the medicine they had given him opened his ductus arteriosis which allowed him to get the oxygen to his blood that he needed. My brother arrived and we spent some time with him before getting some sleep, the hospital was nice enough to supply us a room in the maternity ward just down the hall for the night.

On to part 4.....

Alex's birth story part 2

SUNDAY, JULY 09, 2006 05:06 PM, CDT
Part 2:

Please read the entry before this first.

After a couple of minutes I knew I couldn't just sit there and wonder anymore and Craig and I ventured down the hall past the well baby nursery and to the window of the special care nursery. I was actually releived by what I saw, a nurse giving him blow-by oxygen. I figured if he was getting blow-by then he was actually breathing on his own and that was a very good thing. They let us in and the nurse said "he's just having a little trouble getting enough oxygen, respiratory therapy is bringing a hood and we'll see if that does the trick" Not wanting to be in the way and it seeming as if everything is well under control and not too scary, we went back to our room.

We sat there and cried for a while, both still quite unsure what was going on but terrified that our perfect world had just been turned on it's nose. I tried to stay optimistic because I know babies, especially early babies can struggle with thier breathing and need some help for a few days. Still the tears woulnd't stop coming.

The midwife came in and I think for the first time I really started to realize that something wasn't right at all. It seemed as if information and no information at the same time was just flying all around us. I remember hearing "we think it's his heart, these things can be fixed" and "we can't get him intubated". Then the priest came. When I saw him my heart sank and I literally sobbed like I had never before. My baby was dying. We were taken down to see Alex and he was very very blue. I was scared of him and cried harder at the guilt of that thought. I looked at them bagging his tiny blue body and couldn't bear to watch my son die in front of me.

I stood there for a minute and the midwife I think kind of nudged me closer. Craig and I kissed his little head and told him we loved him. They asked if we wanted him baptised "if anything should happen".

We went back to our room to await the ambulance that would take Alex to a bigger hospital better equipped to care for him. Numerous people made numerous attempts to intubate him, with no success. Aircraft was grounded due to the fog. The 2 1/2 hour wait for the ambulance seemed an eternity and everytime I looked at the clock it seemed to be standing still. I was dishcharged and the midwife and nurse helped us pack up our belongings. They tried to get me to eat but there was no way anything was going down without coming back up.

Finally we were told the ambulance had arrived. We were taken back down to Alex to see him quick before he was loaded up. His color was worse but when the doctor lifted the mask off his face he let out a tiny squeak of a cry which for that moment I took as his way of saying "i'm ok". The NICU team informed us that they too had been unsuccessfull in intubating him and after we kissed him and told him we loved him they loaded him in the incubator and left with our sweet baby.

We went back to our room where the doctor sat down and told us the news, it was worse than we could have imagined. It was his heart, but they thought he had deformities in his breathing tubes as well, possibly all over his body.... she said "it's very very grave". We were given 2 pictures of him and they helped us to the car and we headed after our baby boy.

On to part 3.............

Alex's birth story part 1

SUNDAY, JULY 09, 2006 04:52 PM, CDT


Alexander was so special from the start. He truly was in every sense of the world a miracle. You see, Alex was a Vasectomy reversal baby. Reversals don't really carry a very high chance of success, but less than 6 months after, we conceived our sweet boy.

My pregnancy was very uneventful. It was almost TOO easy. I gained little weight, didn't have any complications.

At 5pm on January 27th, after a day of shopping my water broke almost 4 weeks early. Surprised and scared we got everything in motion to go to the hospital. My sister met us there to take the kids back home but before they left they hung out with us in the hospital room for a while. They left at 11pm to go home and get some sleep, knowing that when they returned in the morning there would be a new baby brother in the family.

Alex was born quickly at 2:32am. He was absolutely perfect having none of the preemie problems we had been forewarned about. He nursed right away, passed his initial newborn exam with flying colors. We spent a few hours with him and moved to the post partum room. They wanted Alex to be in the nursery while we slept because the nurse didn't trust him not to pull some funny business, premature babies can sometimes do ok at first and then start to spiral down after a few hours and have trouble. Fortunately Alex did not.

In the morning Alex was brought to us after the pediatrician gave him a throrough once over. She told us that he looked great and we would most likely be taking him home with us on Monday. We had a little birthday party for him with the kids, complete with cake and chocolate milks. For some reason I needed to make sure that every one of them got to hug and kiss him before they left to go to grandmas house.

After they left Craig went to do his tradition, shopping for the going home outfit. The nurse came in and said that Alex was a little chilly so I should hold him skin to skin to warm him up. I changed his diaper and snuggled him. Craig returned and the 3 of us hung out watching tv for a while.

After a while Craig looked over at Alex and commented that he was very pink. I looked down and thought that he looked purple, but figured it was the lighting in the room. To be sure I leaned him back to get a good look at him and when I did his eyes got wide, he gasped, let out a tiny sqeak of a cry and then his eyes rolled back and closed. By this time Craig was already running down the hall to get some help as I was too stunned to think to push the call button......

Two nurses ran into the room and I was still holding him like that, his head in my hands and I, in a state of almost shock said very calmly "I don't think he's breathing right" I think I fully expected to be told he was fine actually, the heart doesn't let the mind process things sometimes. The nurse instead said "oh no he's NOT!" and grabbed him from my arms. She instructed Craig to grab his IV pole (he was on antibiotics because he was early) and they all took off running down the hall. I sat there for a minute, not quite understanding what just happened and staring after them.

After a few minutes Craig came back and said 'they are giving hime some oxygen". I still couldn't even fathom that something might be seriousely wrong.

Click the "newer" button below to move on to part 2

Living without Alex 7-7-06

FRIDAY, JULY 07, 2006 05:07 PM, CDT
Things seem to be getting harder for me and easier at the same time. I don't know how or why. Yesterday we went to our first midwife appointment and since it was my birthday the midwife agreed to let us take a quick peek with the ultrasound machine since it's far too early to hear the heartbeat with the dopper. The machine they have in the office there is ancient, and not very good and for a while we could see the baby, but no flicker of a heartbeat. I stared at the screen, willing that little heart to show it's presence.......... and then it did! Such a relief.

So why do I feel sad? I feel sad that this isn't Alex. I feel bad that I find myself thinking that another baby couldn't possibly ever be as special as he was. I feel bad that I don't know if I can bond with this baby because I'm afraid he or she will be taken too.

I don't feel good physically. I feel weak. I feel like something is wrong inside my body and I find myself always fearing for my own life. Something IS wrong with my body...... my heart is broken and I'm not sure it will ever really heal.

Grieving my child is something I could not prepare for. Initially not even as much as now. See at first people expected me to be a basket case. Now.... it seems people expect a person to just kind of get over it in a way, move on. It's so difficult to do that. Part of me never wants to move on, to get further and further from our lives with Alex. I am losing my memories, a little at a time and sometimes it just feels like it never really happened at all. I mean in so many ways it's like this past year never happened, because our lives by all outward appearances are exactly the same as they were a year ago. 5 kids, expecting another, Craig working his tail off, me trying to keep things running smoothly and struggling with the constant changes that having children brings. The only difference really is we have pictures on the wall of a baby who we never got to know, we live day to day with loss on the inside, while being "normal" on the outside.

Living without Alex 7-2-06

SUNDAY, JULY 02, 2006 11:33 AM, CDT
Wow, what a pity party that last entry was eh? Jeez Kat. I'm told I'm allowed to have pity parties now and then so I guess I should just take advantage of my right to whine and do it every so often.

I really am unsure if I've accepted things though. I've decided that after the holiday I'm going to call and make an appointment with the family therapy services. There just isn't any reason not to. If not for me, for my kids.

It seems that the kids' grief is rearing it's head now. It's really a learning experience. Kids do grieve differently than we do. Christian has been pretty teary lately and when prodded he admits he misses Alex. It's hard for Craig and I to ask the questions we need to and get to the bottom of things with them because our kids hurting so much is pretty hard for us to bear. So it's time to talk to someone.

It's really strange how the grief changes and evolves. In the early weeks you are under this fog and it's difficult to remember, to think, to process thoughts at all let alone difficult ones. That fog very very slowly lifts and then I've had a period of "I'm ok" You feel a bit empowered, because you know you have just experienced the worst emotional hurt possible in this world, and you survived it.

Now, the fog is gone the acute pain has gone. But now the questions rear thier ugly heads. Replacing the acute pain is a dull ache that won't go away. You don't feel quite so empowered anymore because you aren't entirely sure what life is for you now.

It's all just impossible to put into words because I struggle to understand it myself.

Living without Alex 7-1-06

SATURDAY, JULY 01, 2006 09:35 PM, CDT
Sometimes I wonder if I'm just not in a huge state of denial.... I don't visit the cemetary and I'm starting to feel insanely guilty for that. Maybe it's because although I think I've accepted it, I really haven't. In so many aspects I'm still living Alex's life........ maybe I have yet to realize his death?

Lately the whole thing has just seemed kind of surreal. Like there's no possibly way all this has happened. I feel like it was this crazy dream, one of those dreams that haunts you long after you wake up even though you know it was only a dream.

Maybe none of this makes any sense. I don't even thing anyone reads this journal anymore so I'm thinking about discontinuing it. Why should they read it? The adventure is over. The excitement is over.......... all that is left is............ I'm not sure what.

Living without Alex 6-30-06

FRIDAY, JUNE 30, 2006 12:20 PM, CDT
Last night I had a dream that I was running around this big city and I couldn't find my way. I was afraid, lost, but refused to give up. I woke up and kind of chuckled how that dream so truly reflects the past 5 months.

It's hard to beleive that Alex would be 5 months old now. He would be a "real baby" as I like to call babies that are no longer lazy newborns, but are playing and learning. I cannot picture him 5 months old. He is truly forever a newborn to me.

I've been very busy. The parade preparation is taking a lot of my time. Bears had to be shipped yesterday, summer in a tourist town is hectic anyway. The kids have been running from one summer school activity to another.

Wednesday I had lunch with another heart mommy. The first I've met in this area. It was so nice to just talk and have someone actually GET what I was talking about! Thankfully her sweet daughter is a survivor, but it seems she still went through some feelings of loss, loss of the child they excpected maybe. No one ever really thinks thier child will be born sick, especially when the pregnancy doesn't indicate anything like that. Anyway, we are going to work on implementing a support group in our area.

Well, the work is never done!

post moved from Alex's blog 6-27-06

TUESDAY, JUNE 27, 2006 11:42 AM, CDT
I'm feeling a bit better about things. Well maybe not so much BETTER about them, but I'm able to distract myself pretty easily.

We are going to be in the local 4th of July parade for the Bubba's Bears project. Due to mis-measuring I get to dress up as the big blue "Bubba Bear" instead of Hailey, joy! So, pray for cool weather!! It'll be fun though, were gonna have quite a few people with our group, we'll have a little "float" with a Big bubba's bear on it and then the kids will hand out Candy and my friend and I will pass out blue and red keychains. We'll be playing Laurie Berkner music so the kids will get a kick out of it all.

Yesterday we recieved our official documents stating that we are, in the eyes of the law, licensed to "practice the business of charity" hehe. It's nice to finally be all recognizable and legit.

Well I'm off to pick up the kids from summer school and then to work more on the parade stuff!

post moved from Alex's blog 6-25-06

SUNDAY, JUNE 25, 2006 01:26 PM, CDT
I'm finding myself asking some hard questions today, questions that I don't have the answers for. Questions that I'm not sure I WANT to answers to.

Did my baby die because of someone's mistake? I'm sure every bereaved parent asks this. You want to blame somebody, you want it to be someone's fault so you have a place to direct your hurt and anger. But...

Last night I had a dream. I dreamt I was walking in a beautiful field full of daisies and in the distance I saw a red haired little boy, no bigger than the tallest flower running. I ran to him to realize that I was standing face to face with my son. I scooped him up in my arms and cried the tears that have been dormant for so long. I asked him if he was happy and he said he is. I asked him if there was anything we could have done to save him and he said that Craig and I had done everything we could have, but that he had planned to stay until he had his bleeding problem. After that he got sicker and finally God asked him if he wanted to go home and he said he couldn't stand the pain anymore and went.

I know it was a dream. But did the heparing "incident" kill my child? He was doing so well before that, SO well. Sure he had his complications, but he really was improving. Did someone KILL my child? I have the surgical report from that incident, it doesn't jump out at you, was it correct?

That dream really upset me. I has knocked down my resolve. I always just convinced myself that he wasn't meant to be here, from the start God had planned to take him back. But what if that wasn't the case? What if he would still be here if someone hadn't screwed up and given him too much heparin. I still don't know the specifics on that, it was all very hush hush and I still remember that evening was the ONLY time, in 6.5 weeks that I had EVER been asked to leave the room during nursing shift change. What were they hiding?

In the days that followed that I heard tiny bits at shift changes and what not....... I heard "heparin incident" "got too much heparin". At the time Craig and I, we were too scared to ask. We had no options for Alex at that point besides right where he was at. We had to keep our faith. I even admit I went so far as to tell people things that weren't true about the situation being investigated when it wasn't. Part of that was probably because of my own guilt, I felt a duty to look into it, but I couldn't stand to know. It's something you can't understand unless you are there, your child laying in that bed with nowhere else to go. You just have hang on to any thread that it might have not happened the way it appears.

I guess a case could be made that he DID live that night. With a lot of hard work from the docs and nurses he DID live. But did he? That morning everything worked, after that, he never peed again. I remember Dr D telling me that night "if he hadn't bled, I think we could have gotten him closed, so we want to try again asap" but after that, he was just too weak to withstand it. So if that hadn't happened would he have been closed? If he had been closed would he have gotten septic? I don't know what to do. I want to know the answers, I want honesty....... but if no one could be forthright with me before, why would they now? I'm angry. Why didn't anyone just come to us and say "this happened, were sorry?" Because we aren't lawsuit happy people, you know what we would have said? "humans make mistakes, thank you for being honest". But they weren't honest. That's what makes me angry. I think someone may have made a horrible mistake and no one had the decency to tell us.

Post moved from Alex's blog 6-23-06

FRIDAY, JUNE 23, 2006 06:06 PM, CDT
Upon learning that children will be soon having a new sibling, most kids will speculate as to whether the baby will be a girl or a boy, or in the case of Shaylin, will declare her hope that the baby will just simply be cute. However my children, instead now just say they hope the baby will be healthy.

Innocence is something we take for granted with our children. We watch them learn and marvel over butterflies, the moon, clouds and take simple joy in thier experiences. It's very difficult when a part of that innocence is taken from your children, through no fault of anyone it's gone, forever.

I first became aware of this at the Ronald Mcdonald house when one day as I was sitting by the fireplace watching Shaylin and Jacksen play with thier little friends, I witnessed a game that both interested and saddened me. The game involved a baby doll and the children played out the scenario that the baby was sick and needed an ambulance, when the ambulance arrived these children, the oldest a mere 6, began putting "lines" in the baby and instructing each other on life saving measures.

My children now worry about things that are far beyond the imagination of most children. They worry if thier new sibling will be healthy, if he or she will live. They confront thier own mortality...... if babies can die, then children can too. They now know that people die and go away forever, aside from Jack who insists that every pair of baby shoes we see at the store would looke insanely adorable on "baby wex".

As sad as it is, there are also blessings involved. My children have a much greater appreciation for thier safety and thier lives than most other children. The families and special children we met at the house have shown them that people may not always be like them on the outside, but that's ok. They don't see things in black and white anymore. The fact that they know that nothing is forever, makes them more inclined to make the most of every day and to appreciate what they have been given. And that is a lesson that as parents we cannot teach, it's a lesson only learned through experience.

Thank you "baby wex", for helping show us ALL the way.

post moved from Alex's blog 6-22-06

THURSDAY, JUNE 22, 2006 02:54 PM, CDT
It's not often something can send me back to that place. The sobbing mess on the floor place. It happened this morning.

The little girl, Ashley that I talked about in my last entry has gone to heaven. It hit me hard this morning and I spent a bit ranting at God and everybody else. The WHY factor you know. I hope that someday when I get to heaven I will have the priveledge of understanding because I just don't. I try to see the silver lining but it's hard when these kids fight and fight and fight so hard only to die anyway. It doesn't make any sense! Craig said something about lessons to be learned, and I beleive that. But who's lessons are they to learn? The parents? well how fair is it to put a child through that for someone else's education? Is it the child that is learning? Why does it have to be learned THAT way.

It will never make sense to me, it's probably not suppose to but I'm a question and answer kinda gal, and I want answers!

post moved from Alex's blog 6-19-06

MONDAY, JUNE 19, 2006 04:04 PM, CDT
Once again I need to ask for your prayers. This time for a little sweet girl named Ashley who also has a special heart.

Ashley is in the PICU and so much of what she is going through we lived through with Alex. She's in rough shape, transplant seems to be her only option but she's too sick for ECMO support until a heart becomes available. Please pray for this family that thier miracle comes in the form of healing for this sweet little girl.

Yesterday was fathers day. I can't really say how Craig did with it because for the first time in quite a few years, he worked on father's day. He was kind of distant in the morning and left for work early and I imagine he did that to stop by the cemetary before work. A lot of you get to listen to my ramblings, but don't get to know much about my dear sweet husband unless you know him personally. He's such a great husband and father and my heart hurts for him. I wish I could just take his pain away and I can't. He's doing much better that's for sure and I am confident he's on the right road to healing. I just wish he didn't have to hurt.

Post moved from Alex's blog 6-17-06

SATURDAY, JUNE 17, 2006 09:18 PM, CDT
I don't really know what to write in here anymore. My thoughts and feelings seem clouded lately. Not a day goes by where I don't think of Alex and I don't expect that will ever change, nor do I want it to.

So many people take for granted. Take for granted that they will give birth to a healthy baby and take that baby home, that they will watch that child grow and learn. So many people just expect that thier child will be here tomorrow. Of course they do, they haven't seen what i've seen.

I ask you all to pray tonight. For a sweet little girl named Tiahna that is in the U of MN hospital fighting for her life from Leukemia. Such a beautiful baby. Her parents received some disheartening news today, the kind of news that really sets you back in the knowledge that your child might not live through this test. Not that I'm sure they've ever forgotten it, but sometimes you let yourself drift to the other outcome and by the grace of God you can keep yourself there in that happy place of "my child will come home". And then things change and you have to look in the face the possibility that kids DO die. They die suddenly, they die after long illnesses, they die because of mistakes, accidents, murder. Children die. Treatments sometimes can't work and we fight with God for our children until the time comes to realize that these children aren't ours to keep and it's a fight we can't win. This is a hard reality to swallow for anyone, but when you are the parent of a child who might die, the feeling is undescribable.

I'm probably not making much sense tonight and that's ok. My heart is heavy tonight. I feel like since Alex died death follows me. Although I may not always personally know the children or thier families, children dying is everywhere I turn. Sometimes I wonder if it's me lol maybe i'm bad luck or something. I wonder why God lead me to this place I stand right now. What purpose does it serve to keep death in my sights? What do you want me to do with this wisdom and knowledge that you've given me through the life and death of my dear sweet son? I pray for direction.

Post moved from Alex's blog 6-13-06

TUESDAY, JUNE 13, 2006 12:01 AM, CDT
So I didn't go to Tyler's funeral on Saturday. I won't elaborate.

I'm really glad that I got pregnant again so soon. I find myself being able to see babies again without being so sad, I almost ALMOST was able to go into the infant department at walmart today........ big step.

I have however been feeling a little guilty. I look at Alex's picture on my computer desktop and I just search his little face and try to remember him........ my memories are so hazy and I hate it. I can't remember anymore his smell, I can barely remember what his fuzzy hair felt like. I vaguely remember the way he scrunched his face up during his silent cries. I find myself angry about that. If I can't have my baby why can't I have my memories at least? Why do I have to lose those too? Sometimes I look through the photo album at the pictures of him and I can remember the day, but I can't remember that moment the picture was taken. I can't remember how it felt to hold him. It's frustrating.

post moved from Alex's blog 6-9-06

FRIDAY, JUNE 09, 2006 10:00 PM, CDT
Tomorrow is Tyler's funeral. I'm a little nervous still waiting for the part of this that's going to suck me right back to losing Alex and tear me apart. So far, so good though.

Yesterday we had a bbq at my moms for Craig's birthday. It was a beautiful day and we spent the day just being lazy and watching the kids do 'stupid human tricks' as my sister liked to put it....... you have to understand, her sense of humor is even more left field than mine (corrected the I before E thing there Jana, in case you ever read this aren't you proud?)

Today we went to the MN zoo and had a blast. Allen snuck out of work and joined us and we made a day of it. After we went and saw a IMAX 3D film which was awesome, it was hilarious to watch Shay and Jack (who have never before even been to a normal theater) reach out and try to touch the 3d pictures. I'm not sure the poor man in front of Shay appreciated it much though. They would get scared at the jumpy parts and then just giggle like insane little elves lol

I noticed about halfway through the day that although I still find my eyes wandering toward babies, especially newborns (since Alex will forever be one in my mind, even though he'd be over 4 months old now) I don't look at them and feel that overwhelming sadness I use to.

It's amazing how the heart can heal. The problem I battle now is how much healing is fair and how much should I make myself feel guilty for if that makes any sense. I like to beat myself up when life is going well for me I guess and I need to stop doing that.......

Rest in peace Tyler 6-7-06

WEDNESDAY, JUNE 07, 2006 04:56 PM, CDT
Last night I had the honor of being in attendance as Tyler earned his wings and went to be with God and Alex. It was a very moving, spiritual experience. The 'wonder twins' are together again, for eternity.

Godspeed little Tyler, I am forever grateful for the opportunity to know you.

Post moved from Alex's blog 6-5-06

MONDAY, JUNE 05, 2006 08:53 PM, CDT
As when Alex was in the hospital, no news is good news. As we heal, this journal becomes less needed as a venting place for our pain.

Things with Bubba's bears have been plugging along. We are getting a growing number of bear requests and I'm happy to be putting the time into this. As soon as I get all the bugs worked out I can start handing more off to the many people who have volunteered to help with it, which is going to become a welcome break since it really has become a full time job and I find myself pretty exhausted at the end of the day sometimes.

Today miss Shaylin graduated from her pre-kindergarten program. She was a doll in her little cap and gown and they always just make those things absolutely adorable, you can't help but get a tear in your eye........ go class of 2019!

Tomorrow is the last day of school for all the kids. This school year has just flown by with everything that has happened. It's kind of strange how this time last year we were in exactly the same place in a lot of ways as we are now. Expecting a baby, preparing for summer with 5 active children keeping us busy with summer school activities. The only thing that is so very different is that we are different people than we were. It's strange that such different people are living the same life.

Of course it's not the same. It will never be the same. But to all outward appearances it really has to be. We are showing people that we can survive, our family has taken a hard hit, but we will stay together and be stronger than ever.

Post moved from Alex's blog 6-2-06

FRIDAY, JUNE 02, 2006 12:07 PM, CDT
So, someone stole the flowers off Alex's grave that my mom put there for memorial day. How nice is that? Stealing flowers from a deceased person is bad enough, but a BABY? Do people have no morals?

Otherwise, things have been going well. Bubba's bears is keeping me busy and I like that it does. Craig has even learned how to do the bears which is a great help! It's neat to see the pictures we get of kids with our bears all smiling and happy.

Asking once again for your prayers today. For Luke, who is being extubated today for the final time, if he struggles too much they are going to give him a tracheostomy, so please say a little prayer that he does well and doesn't need one.

And for Tyler. His family isn't getting very good news about his prognosis and may have to make some difficult decisions soon. Please pray that the doctors can find some way to turn things around for him, and if that is not in God's plan, pray to give him and his family some peace.

Post moved from Alex's blog 5-30-06

TUESDAY, MAY 30, 2006 02:38 PM, CDT
Now that the news has really started to sink in I find myself torn. I am very excited but I'm SO scared. I'm not so much scared of them finding something during the tests they will do when I'm pregnant , I'm more afraid they will miss something and we'll think once again that we've just had a perfect healthy baby and then he or she will get sick like Alex did unexpectedly.

I guess this is normal. And we won't breathe easy until after the baby is born and we get an echo done to be sure there is nothing wrong

Moved from Alex's blog 5-26-06

FRIDAY, MAY 26, 2006 03:50 PM, CDT
Well, I am happy to share the wonderful news that we have been given a gift from Alex and God.

We are expecting a new little miracle February 3, 2007

Moved from Alex's blog 5-23-06

TUESDAY, MAY 23, 2006 04:18 PM, CDT
Well, I finally did it...........

You may be aware that after the birth of a baby there is a '6 week' post partum appointment that every new mother must have, and every new mother thoroughly dreads. In my case, dreads enough to put it off for months.

My original appointment was to be March 14th, I decided not to go that day because Alex was really unstable and I couldn't bring myself to be 2 hours away from him. After he died I just didn't want to do it, it was another one of those things where I was suppose to be bringing him with me and showing him off to all the midwives and nurses, and I couldn't.

Well, my reproductive health at stake, I did bite the bullet and go. I should really have called first to make sure the staff was aware that Alex had passed, but I didn't. I kind of figured that they would already know.

So the nurse takes me back and is doing the bp and all that and she askes 'what is your babies name?' And I swallow hard and say 'he's deceased'. She of course said she was sorry a few times and finished up her part and left to get the midwife.

The midwife comes in and starts crying, which of course makes ME start crying, it's just a chain reaction every time. I'm ok until people cry. I jokingly yelled at her for making me cry and she said 'i know, but we feel like these are OUR babies too'. I can't explain it, but that made me really happy to hear.

All in all I was there for over an hour. We talked a lot about Alex's condition and what happened and our plans for having more children. She went over with me how things will be a little different my next pregnancy because I will be involved with a perinatologist in Marshfield for level 2 ultrasounds and fetal echo's. (A perinatologist is a high risk obstetrician, although I won't be 'high risk' unless they in fact find something wrong with the baby) The only thing that remotely makes me high risk is that I had a premature baby, and honestly that was probably due to him starting to struggle in the womb and initiating labor because it was time to be born.

I was pretty happy that I will still be able to have the pregnancy followed by the midwives rather than seeing an OB (again, unless there's something wrong) because I really love them and the way they do things.

Anyway, everything looks fine in that respect and we were officially given the green light. It was really nice, after the crying to be able to talk about Alex, and someone really wants to listen.

One more point to add, to anyone who might still be harboring doubt about my mental health. We talked about depression, about things that can help etc and she agreed with me that antidepressants probably aren't the answer as long as I can still be productive and live life. At the end of the visit she said that I surely don't seem 'depressed', sad yes. But not depressed.
So I am taking care of myself, and I do have the doors open for help if it's needed.

Living without Alex 5-22-06

MONDAY, MAY 22, 2006 11:20 PM, CDT
I've been a little off the past couple of days. I think I know why, but it's the sort of thing that you don't really share with mixed company;) I've just been a bit weepy and cranky. I KNOW I'm overworking myself but hey, someone has to do it.

On Thursday I'm planning another trip to the U of MN to deliver some bears and see some of my favorite babies (and big boy Caleb too!) . Craig had planned to go but now he changed his mind. He may never be ready but that's ok too.

Not much to write about tonight.

Living without Alexander 5-21-06

SUNDAY, MAY 21, 2006 03:32 PM, CDT
I would like to start off by thanking everyone who has shown us that there are good people in the world by thier kind words and generosity contributing to the Bubba's Bears 4 CHD project. I never in a million years expected the kind of response we have gotten.

I look back and think of all the events in our lives that have led me to this point where I am now. All of the times things just didn't work out the way we planned were just preparing us for the road that God meant for us to travel.

It's funny because a couple of years ago I heard in a country song the line 'if you want to hear god laugh, tell him your plans' and I thought that was sooo true. I never realized until now just how true it actually is.

We spend so much of our time trying to plan and control things and some of us are hard to teach I suppose. Life is so much less stressfull when you just let Jesus take the wheel and buckle up and enjoy the ride.

The elevator incident

SATURDAY, MAY 20, 2006 05:35 PM, CDT
So, I said i'd be sharing stories of our adventure and here's one that I am remembering today.

The Elevator incident.

When we first got to the U of MN we noticed that the elevators tended to be a little quirky. Sometimes they wouldn't recognize that the door was shut and you'd have to jump to get it to shut enough and go (yeah, and what'd they do with that 4 million donation from the Vikings?) And Craig and I joked that one day, one of us was going to get stuck in one. My biggest fear.

Fast forward about 4 weeks. Craig was at home working for the weekend. Tyler's mom and I decided to go up to the 8th floor (yes, that hospital is backwards, the cafeteria is on the top instead of the basement) and have some dinner. We have our 'is this really meat?' cheeseburgers and headed back down to the 5th floor.

The elevator stopped on the 6th floor to allow more passengers on. An elderly woman, her daughter who had previousely had a stroke and was in a wheelchair, and 2 other seemingly fairly healthy daughters. Along with another woman who was traveling alone. While they were getting on the door was goofy and was trying to shut on them. Wierd

So they get in, the door is finally allowed to close and..........nothing happens. All the buttons go dim, and instead of the little LED thing saying what floor we were on it instead said ---.

We all sat there for a minute just waiting and processing what was happening. After pushing all of the buttons and nothing happening to our dear dead elevator we called for help.

The nice security guard comes and from outside the door we hear him say in very broken english something about resetting the system. A few minutes later we feel ourselves move, we thought we were going up (except for the lady in the corner who insisted we were falling to our death), but the doors didn't open.

The broken english security man said he was going to call maintenence. He told us to back up as he was going to try to shove something in the door to 'get us some air' (as if elevators are air tight or something). Then inquired as to if we would like him to try to get us some magazines. About this point is where I succumbed to the unrestrainable urge to laugh hysterically and yelled that the magazines wouldn't be necessary, but a margarita would be quite nice.

A few minutes later the maintenence gentleman comes and tells us he is going to reset the system (didn't we already try that?) Nothing happens.

By this time we had been in our close quarters for approximately 30 minutes. They informed us that thier meneuvers hadn't worked (oh, really?) and they were calling the elevator company. A few minutes latery they informed us that they man from the elevator company would be there in 20 minutes, as he was coming from across town.

I offered my phone to the other unfortunate souls in the elevator so they could call anyone they needed to call. (my phone worked so nicely in MPLS, sigh) and when they were finished I called Craig at work.

Me: You'll never guess where I am
Craig: Jail? (WHAT?!?!)
ME: errrr. no. stuck in the elevator at the hospital
Craig: LMAO

Well, not exactly the response I was after. So I call Alex's nurse and tell her where I am, she too found it rather amusing but was kind enough to inquire as to whether or not I was ok.

I'm still trying to repress my laughter, thinking 'yep, THIS is my life!' When the elderly woman sits down on the floor, begins hyperventilating and promptly insists that we were all going to die, she had it all figured out. We were going to crash to our deaths'

The rest of us are trying to calm her down, lest the poor soul go into cardiac arrest on us. She did regain her composure after a few minutes and everyone in the elevator breathed a sigh of relief that we were not, in fact, going to have to preform life saving measures in the elevator.

A bit later we heard someone from outside tell us to stand back. It was like something in a movie and I pictured they were going to try to blow the door up with dynamite or something, they were quite dramatic.

Then this big buy prys the doors open in some heroic effort akin to a superman move. We all stepped out and strange lady in the corner proceeded to hug everyone, apparently going through such a 'traumatic' experience showed her the love.

Someone from the hospital took our names and addresses. I guess to prepare thier legal defense if any of us decided we were going to sue for pain and suffering or something and gave us all $4.50 meal vouchers for the cafeteria. Apparently we HAD actually gone up when we thought, because we were now back on the 8th floor.

A few of the folks then refused to enter another elevator and took the stairs down. Myself, thinking that 8 floors down was a bit ambitious (was going down to smoke) decided to get in another elevator. The nice security fellow demanded he ride with me, apparently he was afraid I'd break another elevator.

Living without Alex 5-20-06

SATURDAY, MAY 20, 2006 03:29 PM, CDT
After some thinking about the entry on Thursday (2 before this) I have come to the conclusion that this journal DOES tend to be a bit misleading. I mainly post entries here when I'm struggling, so that's what people see.......

Rest assured folks. I'm as sane as I always was (which may or may not be a good thing).

Last night I had a baby dream. Not sure if the baby was Alex, but it felt like it was. A healthy baby boy and I was just doing all the things you'd do with a healthy baby boy. Interestingly enough, I knew it was a dream and didn't wake up upset.

I don't have much to say today. It's a gloomy day and I have a pile of laundry waiting for me. A great day to preform some bear surgery and get some things done around the house. Which you can tell from this entry, I'm not doing.

Living without Alex 5-19-06

FRIDAY, MAY 19, 2006 01:02 PM, CDT
For those of you who've seen me make mention of Tyler, please pray with everything you've got.

A little background. Tyler was born January 17th with the same diagnosis Alex had. Alex and Tyler were roomates for over a month and we got to know his family well.

Tyler has been struggling lately. He has from what i'm told a blood clot in his heart and there was some concern he was becoming septic a few days ago.

At 1:30 this morning I received a phone call from his mother that his hemoglobin had dropped, she was on her way to the hospital and all she knew is they were doing a scan to see where he was bleeding from (if you remember from Alex, when your hem drops, it's bleeding somewhere).

Then at 3:30 she called me again. Tyler had taken another turn for the worse and was very dusky (hospital lingo for turning blue), they had gone up on his vent settings but it wasn't helping and at that time they were bagging him and his mother heard them say he was 'hard to bag'. I asked her to ask the doctors if she should have someone come, and the doctors told her to give them 30 minutes and they would come talk to her. I haven't heard anything since.

So I ask for your prayers again, your prayers were amazing in helping Alex to overcome so much, they are very powerful. I'd also like to ask you to pray for our other former roomate Luke, He's having some issues he's trying to overcome as well.
___________________________________________
Update: I got ahold of Tyler's mom. He pulled through but is still less than stable, the docs really aren't sure what's going on.....