Slack’s Place

A real-time account of life among the Earthlings…

My Baby Boy

by Slack, on January 9th, 2004

Well, today we finalized things with Leilani’s death. Paperwork, final expenses, etc… How do you put into words the feelings I’m going through? I don’t believe it is possible. This is something you have to go through on your own to understand. You can sympathize, and even imagine, but unless you’ve lost a child, and more specifically a child with a twin, you won’t understand. I pray nobody ever has to experience this again. I wrote before about infinite emptiness — NOW I know what that is. It would be one thing if we lost our only child. But to loose a child and still have one in NICU is uniquely draining. The contrast of life and death is amazing. Once again it reminds me that moving forward is the only way to heal.

Even in light of commercializing my daughter’s death I still had one of the best days of my life today. We went in to visit Rhys of course, and he is doing very well. Very active. Very tollerant of his cares. His nurse today said he is showing very good signs. We have not heard the official word regarding a possible infection, but the response from the transfusion, blood counts, and the fact that the infectious disease people have not yet called about his cultures is a great sign that he does not in fact have an infection.

His nurse involved us in his cares today which was a nice treat for me. I got to cradle his head and help clean him up. Mom will be able to hold him again on Sunday and we are really looking forward to that.

Life will always be a bit darker since we lost our daughter, but Rhys will be our guiding light and our inspiration.

Here’s a picture of Rhys. I’m holding his head, and mom is holding his hand. :)
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THANK YOU

by Heidi, on January 9th, 2004

I just wanted to let everyone know how much Allen and I appreciate all of your support, prayers, and love. To go through something like this is hell on earth, but with all of you surrounding us it has helped greatly and more than I could ever express in words. Thank you.

Rhys had a rough night last night with his oxygen desaturations. His lungs are so immature and will be for some time. The docs drew blood and urine samples today to try and grow blood cultures to see if there is an infection looming. We should find out the results of these tests tomorrow afternoon. He had another blood transfusion today and is doing much better. He is sucking his thumb and latched onto the nurse’s finger when they were changing out his tubes. His nurse today says this is a very positive sign that he is learning to comfort himself. We also found out his brain bleed is a Grade 3 of 4. A second scan has showed that his bleed has not gotten bigger. We are concerned about the permanent affects of this (Cerebral Palsy, etc.), but only time will tell. Please continue to keep Rhys in your prayers. I feel so far away from a greater power right now.
Thank you so very much for all that you have done. You are all truly great and wonderful people and, we are so blessed to have you in our lives.

Rhys
Rhys 010804.jpg

Leilani Skye

by Slack, on January 7th, 2004

How do I start this entry? At around 8am today we got “the call” from the doctor. He told us Leilani was not doing well, and we should head to the hospital. Shortly after 8am her heart stopped beating, and she lost her fight. It was not expected she would pass so quickly, but she was fighting hard and I suspect she just could fight no longer. She showed amazing spirit to make it as long as she did.

Now she is watching over her brother and us and my life will forever have a void I could never again fill. We’ve decided not to have any services for her. She will be cremated and then we will return her ashes to Hawai’i.

We feel so lucky to have had has much time with her as we did. In such a short time our lives have been so enriched and changed by her. She gave me joy I’ve never before experienced, and a love there are no words for. A piece of my soul was killed today. This wound will heal but the scar will never go away.

Leilani Skye Trevethan

December 19, 2003 – January 7, 2004

Our precious daughter, my beautiful princess. You will be deeply missed.

You touched our lives so magically.

Rest now my innocent angel.

My Late Night Rant

by Slack, on January 7th, 2004

VIEWER DISCRETION ADVISED: I’m a bit off my rocker tonight…

Where or where shall we begin. I’ve always been fond of starting with the bad stuff… I never like to leave on a bad note, so we’ll save the good stuff for last…

We started the day by visiting our daughter to find that nothing has changed. In her case no news is not good news. Her skin has broken down even more. Her stats are faultering even more than last night. She still has not urinated. Another doctor was on duty tonight. I asked for some perspective from him, and basically got the same thing: It would be a miracle if she pulled through this. I asked the doctor to try putting in a catheter to see if they could get her to urinate. It’s possible that she has so many drugs in her that she just “can’t” pee… The cath line was not successful. They could not tell if they put it in the right place and she started bleeding the moment they started fussing with her. We’ve stopped posting photos of Leilani because her condition is truly bad. There’s hardly a patch of skin on her that is not bloody or peeling. Here’s the problem: She has an infection. This causes her tissues to swell. The swelling in turn makes it hard for her to breathe because of the effects it has on her lungs. In preemies lung troubles cause problems with maintaining blood pressure. Low blood pressure causes the kidneys not to profuse. Kidney problems make it so she cannot urinate. This stops her from expelling the fluids building up from the infection and IV lines. And to boot, she is so swelled that her skin is breaking down from being so stretched. This makes her even more suseptable to infection… Yeah, she’s a happy camper… I can’t tell you how frustrating this viscious circle is…

We’re off to a beautiful start. Then we go visit Rhys to find he is still not pooping. Not a terrible thing at the moment, but we are concerned. They are also stopping his antibiotics today. I know it’s a good thing, because too much can hurt him in other ways… But, they stopped Leilani’s antibiotics, and the next day we find where we are today with her… We’re a bit nervous about it.

Then we discover that my car is having problems. Yay! Car problems! So, we have to take my car in and are left with one vehicle. Not a terrible thing by itself, but I’m subtly reminded of a proverb with a camel and a piece of straw… YIPPIE!

Then shift change found Leilani’s night nurse refusing to take care of our baby because she was overwhelmed with emotion crying and sobbing. This was one of the nurses that rubbed me the wrong way in one of my last entries. Turns out she does have a heart. A bit too much of a heart to work in a NICU. Though I can’t help feel comforted to know that my baby girl touched her so much. :) The effect of this is having a nurse that was playing catch up because she was not expecting to take care of my child. YEEE HAW!

Then in a moment of weakness I decided to give a call up to one of my old demons. Yes, I smoked. Back up! I’m on a fucking roll here!

Stay with me, we’re moving into the comic relief portion. We ran into an interesting little woman in the hall on the way to the cafeteria. Let me give you a play by play:

Interesting woman: Excuse me. Do you work here?

Me: No.

Interesting woman: This is so embarrasing…

What I am thinking: Oh lord, here we go…

Interesting woman: My daughter just had two babies here in the hospital. The nurses refuse to feed the babies and I don’t have any money.

What I’m thinking: Ok, your obviously high. The nurses aren’t going to refuse to feed babies…

Looney Lady: So, I’m trying to get enough change to buy them some bologna and bread.

What I’m thinking: Maybe if I kick her in the knees it would make a loud, satisfying snap!

Looney Lady: So, I was wondering if you could spare some change.

Me: No.

Then she walked away. After we got down the hall and I thought more about it. I wondered aloud, “What if that was a test from god to see if we are worthy of his help? Because if it was, we got a big fat F!”

Heidi assured me, “No honey, that was just a stupid toothless alcoholic.” :) I love my wife.

Panhandled in the fucking hospital. What kind of halfwit smacktard would do that!? Needless to say, that didn’t help my attitude. Bologna and bread!? What the fuck is that!? It wasn’t even clever…

After having a nice meal… Wait, no, it was prechewed cafeteria slop… Anyway, we return to the NICU and find that Rhys did poop after all! Yay! Way to go kiddo! The nurse said he “made a REALLY big poop!” Lo, it looked like it was quite an event. There was more stain than diaper. :) Poor keike. He desaturated right after it happened, so I imagine it was quite a traumatic experience. :) He’s fine now tho. :)

As we left for the night to get some sleep, Rhys was resting nicely. Leilani’s stats were as stable as they would likely get. I won’t sleep much tonight, because I fully expect to get “that call” tonight. Hopefully tomorrow we will behold a miracle and my baby girl will be on her way to recovery. Nobody around here is giving up.

I’ll leave you with a picture of Rhys
Rhys 010604 1.jpg

Dark Days Upon Us

by Slack, on January 6th, 2004

Leilani is not getting better. Today the doctors let us know that her lab work shows she is experiencing kidney failure. If not reversed soon (in a day or two), then it will very likely not get better. She’s still kicking around, and being a general pain in the butt for the docs, so that is comforting. Her bowels are still working — also comforting. But, her blood pressure is low, she is not urinating, her oxygen saturation is not as high as we’d like, and she desaturates easily. Her skin looks awful, and I imagine she is in quite a bit of pain from it all. The doctors have gone into “let’s make her comfortable” mode. I don’t know if any of you out there have ever been asked where to draw the line on a loved one’s life, but if you have, you know where I’m at — I wish this on nobody. How do you tell the doctors not to do chest compressions to ressucitate your daughter and not feel like you’ve given up? I know ethically a line has to be drawn, but it is much easier said than done. If she doesn’t beat this infection soon, I fear it may be her last fight. The thought of loosing my daughter is rotting me inside out.

I can’t impart on any of you what this feeling is like. Helplessness beyond description. Abysmal emptiness. It chills the soul to the point of pain. Nobody should have to endure this horrible feeling… Nobody… What little faith I did have, was shaken to the core today…

Tomorrow is another day…

Rhys and Mommy

by Slack, on January 5th, 2004

Before calling it a night two really kewl things happened. Mom got to hold Rhys for the first time! That was sensational! Also, the Nurse Practitioner allowed Heidi to stay over night. They gave her a room so that she would be just down the hall from the babies. Leilani is still doing not so well. It’s good that Heidi can be close by and drop in on her all night long. I have work in the morning, and our pets need to be taken care of. Otherwise I would have stayed as well…

Time to try and get some sleep… Wish me luck… I think I’ll let IZ sing me to bed (Heidi hates music before bed) along with a glass of scotch… Ugh…

Rhys and Mommy
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