Christmas 2007

was rough.  I’d be lying if I said I felt much other than sadness when I look at this picture.  We should have had our family picture in front of the Christmas tree, with two adorable healthy little babies dressed in pink and blue.  There should have been 5 of us.  Not 4, huddled in a corner of a hospital room.  I know. I should be happy that Lina is doing so well.  I should be celebrating her progress.  I should be thankful for my two beautiful little girls.  And I am.  But the sadness, the emptiness overwhelms it.  I can’t help it.  But there it is. Our family photo. 

And missing my mom has made it all just that much harder.  How many times this season have I wanted to call her – to ask her about a recipe, for example.  That’s something I will never ever be able to do again.  “Hey mom, can you send me that recipe for that thing you used to make…” It’s something so simple, but it breaks my heart.  I’ve wanted to talk to her about the presents I got Annika.  To make a list of the ideas for her to send.  There were no presents under the tree from Grandma this year. And Grandma used to have so much fun shopping for her.  IT’S NOT FAIR!!! I just want to scream.   I know it’s cliche, and I know it’s not useful, but “WHY ME”?  “WHY US”?  Why did this all have to happen? 

 When she was sick and I was there with her, it was strange. I felt sad, but also very matter-of-fact about things.  I did what I had to do.  I knew what was coming and there was nothing I could do to change things, so I just tried to spend as much time with her as I could while “getting things done” (taking care of the house, taking care of Annika, trying to work remotely and so on).  I didn’t let myself step back and think about ‘the big picture’ (the big picture being not having any parents left, my children growing up without their grandparents, losing the ties with my childhood…).  All of that is hitting me now.  Hitting me hard.  And it hurts.  A lot.

And I miss my dad, too.  It’s been almost 5 years since he died. But it still feels so empty without him.  I think about him so much when I look at Annika.  He’d have been such an amazing, devoted, doting grandpa.  I cannot even believe that he didn’t get to meet her…or her him.  I think the biggest hit this year, toy-wise, was a big box of marbles.  As she laid on the floor on Christmas Day, playing with her marbles, I could just see him there on the floor with her.  Teaching her how to shoot them. 
Why couldn’t things have been different?

Lina since then

Well, I’m skipping over a lot of detail here. It’s been 2 months since Cole died. Hard to believe. I still miss him terribly, and cry about him a lot. Lina’s doing well, though, thankfully.

On the night that Cole died, they called to tell us that they thought Lina had an infection called NEC (necrotizing enterocolitis). It was the last thing we needed to hear. It’s an infection in the intestine and can be very, very serious. Fortunately, I think they caught it early. They started her on several antibiotics, and it seemed to clear up relatively quickly. She was on the antibiotics for 14 days and they held her feeds for that time (she continued to get TPN – nutrition through a central line – but they held the feeds of breast milk they were delivering through a tube to her stomach). Although the infection was cleared up, her belly was very distended all the time, and she didn’t poop much. This was a concern. But repeated x-rays just seemed to show lots of air in the belly. There was some concern that she might have a stricture in her intestine, a common complication with NEC. There was talk of doing a “contrast study” where they inject a dye into her intestine and take a series of xrays to see if there was a blockage. But fortunately it never came to that, and she seemed to work out her issues.

Her belly is still distended a lot, but she’s never shown any more signs of infection. I think she just gets a lot of air in her belly from the CPAP.

She’s grown. The last time I posted about her, I think she was 500 grams (about 1 lb 1.5 oz). Now she’s 1650 grams (3 lbs 10 oz). She actually looks like a real baby! She has a little double chin and everything.

She’s still in the isolette, but the heat is off. That means she has to regulate her own body temperature (she used to have a sensor that would make the isolette’s temperature go up or down to keep her at the right temp). And we dress her in clothes and swaddle her.

We started to work on bottle-feeding about two weeks ago. Once a day we try to give her a bottle. She only manages about 5 to 15 cc’s before she poops out. Then she gets the rest through her gavage tube (she’s taking about 32 cc’s every 3 hours now). Part of the problem is that she has a hard time making a seal on the nipple because of the tube in her mouth. If she could get off the CPAP, we could put the tube in her nose which would make the bottle easier.

Speaking of CPAP, that’s our big challenge. She’s on “room air” right now, which means the oxygen level she’s getting through the CPAP is at 21%, the same as in the air we breathe. But she still needs the CPAP to give her a little extra support when she breathes. The past few days we’ve been trying to take her off little by little. She’ll be off for 15 minutes here, a half-hour there. She becomes tachypneic though – meaning she breathes really fast to compensate. And that tires her little body out. It will come, but when…

So anyhow, long story short, she’s doing well. She won’t be coming home next week, though, which is what we’d hoped. Her due date is January 8th, and we’d been told that we could probably expect her to go home around then if all went well. One doctor/nurse I talked to said we could probably expect her home more like by Valentine’s Day. My heart sank. That’s another month+!!! Another doctor/nurse though didn’t seem convinced it would be that long. Still. It won’t be next week.

Here she is at the beginning of December – she how chubby she’s gotten? And that’s almost a month ago.

And doesn’t she look cute in clothes?

Halloween

was awful. I knew that things were going to be rough with the holidays coming up, but who knew that Halloween would be so hard? My plan was to go to Annika’s Halloween party at school and then take her trick-or-treating. But that day all I could think about was how I’d never get to dress my baby boy up as a pirate, or Darth Vader… or dress Lina and Cole as Minnie and Mickey Mouse.

That’s one of the worst things. Not only did I lose my baby, my child. I lost a dream. All the twin things I was going to get to do with them. Thank god I hadn’t already bought a whole bunch of stuff. We hadn’t bought the carseats, stroller, any of that yet. Though we’d received quite a few matching pink and blue outfits as gifts. Those are hard to look at.

Anyhow, back to Halloween. It was such a hard day. We skipped trick-or-treating. We don’t live in an area with a lot of trick-or-treaters anyhow (we had 2). So we’d have had to drive around to find a more kid-friendly neighborhood. It was all just too much. So my poor little bumblebee didn’t get to go. She didn’t know what she was missing of course, but I still felt bad.

I don’t even have a good picture of her in her costume.

October 26th

The worst day of my life.

Well, I sent this website’s address out with my Christmas letter, and said I hoped to have it updated by the time anybody got it. I know I didn’t manage that, but here I go. My last update was October 23rd, when things were bad, but I was still holding out hope.

We spent so much time with the doctors that week. Words used to describe his prognosis were “dire”, “grim”. The size of the bleed and the fact that they weren’t able to drain it with a spinal tap was not good news. He developed hydrocephalus (hence the need for the shunt). The infection wasn’t helping anything. Whereas up until then, he had appeared so strong and his movements all appeared to be so normal, they started to look strange. Every couple of seconds he’s squinch up his face and close his eyes tight and pull his legs toward his body. He seemed to be in pain. It looked like he was having seizures, though the neurologist said he didn’t think it was seizures. He did seem to think it was related to the bleed though.

We spent so much time with all the doctors. They said with a Grade IV IVH in general, there was a 75-90% chance of some deficiency which could be on a very wide spectrum from muscle weakness or a slight limp to never walking, never walking, severe mental retardation… With that kind of information, it’s so hard to make any kind of decision. With the Grade III IVH on his left side too (which carries a 35% chance of impairment on its own), though, and from what they were seeing on the ultrasounds…the hydrocephalus, the movements… it seemed more and more clear that we were almost certain to have impairment, and that it would almost certainly be in the “severe” category.

Going in an out of the hospital (it’s a Children’s Hospital) we would see kids that were so, so sick. Kids that couldn’t even sit up by themselves in their wheelchairs…had no muscle control, couldn’t talk… That is not the kind of life we wanted for our baby boy. We did not want him to suffer. And he already seemed to be suffering. And honestly, we considered Annika’s life, and Lina’s. For all the resources (time, financial, emotional) that a very sick child would take, how fair would that be to them?

In the end, we made the heartbreaking decision to remove Cole from life-support. We met with the hospital’s “ethics committee”, and they agreed that this was a reasonable course to take under the circumstances. Still, it was the most difficult thing I’ve ever done, and I know that it will torment me for the rest of my life. Our doctor told us that it was possible he would continue to breathe after taking him off of the ventilator, and that the process could take a very long time (days).

We waited in a conference room while they got him ready. They took him off the ventilator and removed all the tubes and wires. They dressed him and wrapped him in a blanket and brought him to us. We held our sweet baby boy while he passed away in our arms at 3:00 on October 26th. It took less than an hour. I took this as another sign that he was really, really sick. He was ready to go. My poor, poor baby boy. How could this happen to him? To us?

How does a person get past the death of a child?