So, we're home. Lyra's memorial service was nice. It was a bit short on memorial and a tad long on the service part, but we heard the things we wanted to hear and it was great to see so many people come out. At least 150 people came, possibly closer to 200. People came from all over to be there for Lyra and for us. It was very healing for Maren and I to hug everyone and share some tears for Lyra.
After the memorial, Maren and I went up to the Philadelphia area to be with her sister's family for Thanksgiving. We then flew out to Wisconsin on Saturday morning. We had Lyra buried in a small, rural cemetary near Sturgeon Bay, WI, just a few miles from where Maren's family have a summer cottage on the bay. It was cold and rainy when we got there, but for the grave-side service on Sunday, which included only Maren, myself, and our mothers, the weather cleared up and the sun came out.
Maren and I are doing okay. It's very strange though. Because Lyra was our first child, we are forced into the reality of suddenly being back to our old, pre-parent, lives. This makes being at home somewhat difficult because everywhere there are signs of Lyra. You open the silverware drawer and there are her spoons. There are pictures of her on the mantle and fireplace. Walking through the family room you'll pass the mirror we used to play in front of. Other rooms may have a blanket or a toy of some sort.
It's been a little over a week since Lyra's death and the bright, searing pain of her passing has settled into a dull ache that I'm positive will never go away, nor would I want it to. The majority of that feeling is largely due to my frequent inability to suspend my disbelief that she's gone. The rapidity in which the pain has faded I think is mostly because Maren and I fully understood just how serious her condition was during her last month.
Many of you who were lucky enough to see her when she was outside of the hospital saw either a peacefully sleeping little girl or a smiling, happy, and active one, or rarely, a mad little girl who very much wanted daddy to hand her back to mommy. However, Lyra had many ups and downs throughout her 9 months. The first 5 or so went as well as we could have expected, but at the end of July, after her second cath, which resulted in her having to have the stage I surgery redone, a lot of problems began cropping up. The two major issues were the discovery of a lot of collateral arteries and problems with her blood.
During that second hospital stay, there were times Maren and I did not think she would make it home before having to undergo another surgery. And when she was diagnosed with NEC, a serious bowel disease that could also have required surgery, we were faced with the possibility that she may not make it out of the hospital at all.
This last surgery had serious complications that we didn't fully grasp until near the end. Most of you are probably not aware of this, but it was a minor miracle that she survived the surgery in the first place. I don't need to go into the details, but the major issue was that her lungs were severely damaged during the surgery and unfortunately her lungs needed to work normally for the Glenn physiology. Essentially, she was stuck in a catch-22 situation. She needed to get off the ventilator, but there was no way she could because of the extent of her lung disease.
There were times when she appeared to be recovering well, but I think what we were seeing was her ability to heal from many of the secondary aspects of her surgery. In the end, she never really adapted to the Glenn and the problem with her blood clotting made her situation more dire than it might have been otherwise. As support was being weaned off of her, it became apparent that she couldn't tolerate it.
As you know from reading this site, we were faced with few options. None really. The surgery that was being described to us was more or less a last ditch effort to get her back to a shunt, but there was very little optimism of this working out. We had more than one doctor explain to us, quite bluntly, that what they were going to attempt on a patient like Lyra, with her clotting/bleeding problems, had never been done before. Even if she had made it to and through the surgery, our best case scenario was that she would recover enough to become a candidate for a heart transplant.
When I look back on how everything transpired that Sunday morning, it's hard to say this, but it truely may have been the best possible outcome. Lyra was telling us that she didn't have the strength to endure another surgery. Maren and I are so amazingly grateful that we were there, that so many of her doctors and nurses cared so much for her and us, and that we finally had a chance to hold her once more.
Site note: This is likely to be the last entry for quite some time. Eventually I'll get around to moving everything over to a location just for Lyra. I'll be sure to let everyone know when this happens.
Posted by Tim at December 1, 2004 10:50 AM