Tuesday, May 30, 2006

Reality hits

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.

Friday, May 26, 2006

Ask and ye shall receive

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

Tuesday, May 23, 2006

I'm sorry, my baby died

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.

Sunday, May 21, 2006

If you want to hear God laugh....tell him your plans

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.

Saturday, May 20, 2006

The elevator story

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.

random oddities

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.

Friday, May 19, 2006

God's children

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.....

Thursday, May 18, 2006

Only as crazy as the xrazy worm says I am

hmmm. After reading the latest entry in our guestbook I am left pondering. Are my posts in this journal painting an accurate picture? Or am I just not seeing the accurate picture myself?

I'm not sure if that makes any sense or not. What I mean is, do these entries make me sound more depressed and grief stricken than I feel like I am, or am I really THAT depressed and grief stricken and I am the only one who can't see it?

You see, I actually think I'm doing fairly well. The bear project, the warm spring weather, and doing things outside with the kids have been keeping me busy, and happy lately. Sometimes I feel guilty almost, like I shouldn't be as 'settled' as I am with all of this. Am I just lost? Am I really battling demons so deep that everyone can see it but me? I'm not sure.

To the person who posted the last entry, thank you for your concern. I could tell it wasn't accusatory, but rather genuine and I thank you for that. The kids are doing well, I am very proud of them.

As far as antidepressants, I am not one of those people that thinks badly of them. There was a time when I needed them to get things under control and If that time comes again, I will. I do remember though that although they helped me to deal with things better, they also made it difficult for me to express my emotions,, and I really think that is important as of now. I'm told there are phases of grief, and a book I read said that if you dont' allow yourself to go through them, they will come back to haunt you. So I think it's important that I grieve properly, which, at least with my history I don't think is possible on medication.

Counseling may be an option, but I'm not entirely certain at this point anyway that it's needed. I fear it will just keep me in those depressing moments to talk them to death if you know what I mean. Alex is gone, there isnt' anything I can do to bring him back and I'm trying to pick myself up and carry on, and up until right now I had been sure I was doing a decent job of it, but maybe I'm deceiving myself. hmmmmm

I will have to spend some time thinking about this.

Wednesday, May 17, 2006

Prayer request

Please pray for Alex's old roomate and 'wonder twin' Tyler, he's a 'very sick little boy' as per his doctors at the U. It's never good when they say those words.

Monday, May 15, 2006

The way I see it Forest Gump had it all wrong

I think Forrest Gump had it all wrong with his Life is like a Box of chocolates thing. Life is actually very little like a box of chocolates. A box of chocolates comes with that nifty little map in the top of the box to tell you precisely where your beloved caramel chocolates are located. And even if you somehow, by chance LOSE that little map, you can be fairly certain that you are still going to get....... chocolate, yes?

I've been thinking about this, as if I have nothing better to do (and yes i'm certain I have certifiably lost my sanity) and trying to think of a clever metaphor for what life IS actually like. All i've been able to come up with is a pile of &*#$ and well, that's not very clever or nice....... although maybe fairly close to being accurate.

So anyway, that's my wisdom for the day, or lack thereof. And btw, I'd like to thank the FDA, FBI, CIA, NBA, of whoever it is that ensures that when I buy a box of chocolates, I DO know what i'm gonna get.

Sunday, May 14, 2006

mothers day... but different

Well, I thought i'd be ok. Really I did. Mothers day is just another day. I dreamt last night that it was the evening of mothers day and I thought 'whew, i got through it!' Only to wake up this morning realizing it had just begun.

I woke up crying, quickly got dressed and went to the cemetary. I sat there for a while, crying and talking to Alex and asking all of the mommies in heaven to take special care of him for me.

This afternoon my brother visited. He had been gone on vacation and it was nice to see him.

I now have a migraine. Strange because I haven't had one since I was pregnant and didn't quite know what it was when the vision changes hit me. So this will be short, the bright light of the computer monitor isn't so pleasant. I just have to get through dinner and then I can rest for a bit. Craig, bless his heart tried to get today off but couldn't.

Saturday, May 13, 2006

The roller coaster

I sit here tonight worrying, not about my own child but about someone else's. Apparently little Tyler is septic. If you remember, this is what ultimately took Alex's life. No child should have to go through any of this, it's not fair!

I'm feeling especially cranky tonight, since mothers day is less than 90 minutes away. I am a mother, but one of my children can't be with me. I miss him so much.

I read journals here on caringbridge about other kids who are in various phases of struggling with problems much like Alex's. The constant roller coaster of emotions. I am reminded of our stay in the hospital. I remember sitting on that first chair at the end of the hall in the waiting area during Alex's many OR procedures, waiting with baited breath for a glimpse of a doctor I knew was with him to come out, signaling that they were finishing up and I could see him soon. When they did come out I would wander down the hall and turn the corner to see if the door to his room was open. My heart always skipped a few beats as I walked in there because I couldn't be sure if he was stable or if he was having trouble. I remember the internal sigh of releive when I would see his monitor and every number was where it was suppose to be. I became very good at scanning that monitor for those numbers. If they were above 130 for heartrate, above 60 for systolic bp, above 80 for sats, between 36 and 37 for temp, and below 15 for CVP I could rest easy for that moment.

I became fairly good at teaching myself to only live in the moment. It wasn't possible to think ahead longer than that. Things could change in the blink of an eye and you never knew which way they would go.

I also became pretty good at reading people. You see, dont' tell anyone....... but I loved eavesdropping. I listened to everything. Hipaa laws be damned, I am a very curious person. Sometimes I would overhear that a baby was sicker than mine, and although I didn't want any baby to be sick, it put me at ease a little. One time when they were doing an echo on Alex, they were talking about another kiddo and the nurse said to me 'you know your kid isn't the sickest anymore when they are talking about someone else while looking at his heart'. Little things like that would just make your day.

I've read back on entries in this journal and come to the realization that while Alex was in the hospital, there was a lot of things I left out of his journal. Not intentionally but because my time on the computer was limited, and because at that end of the day my mind wanted nothing more than to just shut down from information and emotional overload. The memories are still fresh in my mind, sometimes they come in spurts. But I will put them here when I think of them and you all can once again, for the moment....... live with us in the pediatric intensive care unit.

Tuesday, May 9, 2006



Last night I dreamt I had twin baby boys. I have no idea what was wrong with them except that they were in the hospital and both had trach's. It was one of those riled up worrying dreams, worrying about how I'm going to keep them alive and where the next curveball is coming from. I hate those dreams. I feel that all too familiar knot in my stomach, the knot I had while Alex was in the hospital. It feels like when you suck your belly in and breathe like that all day..... your muscles are sore. It's strange.

Apparently Craig dreamt of Alex last night. I realized that I don't dream of Alex anymore....... not him precisely anyway. I dream of hospitals, illness, fear, but the baby involved is never Alex. What does that mean?
Kind of makes me feel guilty and even sad. Sad because at least if I dreamt about him for that moment I would be in some remote way WITH him.

I do however dream of twins a lot. Maybe it's because I worry so much about Tyler and Luke that in some way I feel like I had more than one sick baby. I don't know.

On another note, I think Austin and Chris might have mono or something. I won't go into it but lets just say that my boys, who NEVER get sick..... are really being kicked in the butt by something these past few days:( I'm watching the situation closely.

Anyway, looks like it's gonna thunderstorm and Jack could use some cuddling I bet.