Friday, July 21, 2006

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.

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!

Sunday, July 9, 2006

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 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

Friday, July 7, 2006

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.

Sunday, July 2, 2006

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.

Saturday, July 1, 2006

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.