And then came the night… (part 3 of Elijah’s story)

Please read this or all of the posts tagged with “Elijah O’Neil” first if you are new to this blog. The following post contains graphic details pertaining to pregnancy and childbirth… I hope that nobody is offended.

Shortly after Elijah died, Amy from Now I lay Me Down To Sleep arrived to take photographs. NILMDTS is a non-profit organization where photographers volunteer their time to take professional quality pictures of babies that have died or will die soon. We had her take some pictures of us with all of our children, before we said goodbye to our 4 oldest (they spent another night with my sister). Then Amy took Elijah to another room for about 30 minutes to take solo pictures of him. I am anxious to see those pictures! She is sending me a disk of all of the pictures and I can hardly wait. Most of our family left during this time… only my Dad, Joey’s parents and younger sisters were there when she brought Elijah back to us. Amy then took a lot of pictures of Joey and I with Elijah and some with his grandparents. I am kind of wishing we would have waited and had Amy come after Elijah’s bath… because he looked so good when he was all cleaned up, even better than before!

At some point after Amy left, the nurses took him from the room to weigh and measure him… and they also gave him a bath. He came back to us looking so wonderful. Joey and I took several more pictures of him. We knew that we would want as many pictures of him as possible… so we took a lot!

My sense of time was all messed, so I don’t remember when this took place, but I know it was before his bath. Anyway, I had the nurse help me unwrap him so that I could see and remember every part of his body. Although the skin on his face was so soft and strong, the rest of his skin was quite delicate. We cautiously pulled the blankets from his body. He looked really good to me. His stomach had been very distended when he was born, because of his huge kidneys… but it didn’t look huge to me. Joey had seen him when he was first born, and he said that his stomach was really big, but for some reason it was smaller later. His hands and feet were so tiny, but his body all looked perfectly proportioned. He did have some cosmetic defects. He had an extra finger on each hand, but like I said… they were perfectly proportioned so at first we didn’t even notice it. He also had club feet. As I mentioned in a previous post, he did have a “sack” of “water” (some kind of fluid) on the back of his head. Although he did have these deformities, he was beyond beautiful to us! And his face was so perfect. I would have gladly had him be born with only the cosmetic defects.. if only he could have been healthy on the inside. *sigh*

So… Joey and I had decided that we were not going to keep Elijah’s body with us overnight… we weren’t sure what death would do to him and we didn’t want to see it. We wanted to remember him as he was… so soft and perfect. We planned to say our goodbye to him and give him to the nurse before we went to sleep. We gave him to the nurse around 9:30pm. It was so very hard. I woke up several times throughout the night, expecting to feel Elijah moving inside of me. I would put my hands on my stomach… and nothing was there. No hardness of baby. Just squishy jelly fat (haha). I felt very alone that night. Joey slept like a rock (I don’t blame him, neither of us had gotten much sleep at all for 4 nights), but I couldn’t sleep. Nighttime was mine and baby’s time… that was when Elijah had been the most active inside of me. It was rough… and still is rough. Every night, when it is silent and dark… that is when the grief sets in. That is when I am saddest. I miss the time Elijah and I had together. 24 weeks… and I had been feeling him move for 12 of those weeks… it wasn’t long enough. It is never long enough, though… We’ve had Abi for over 4 years and I know that it will never be long enough to have to say goodbye and give her back to the Lord. I hate that I have a lifetime to live without Elijah… and that I know we will be saying goodbye to our Abigail sooner rather than later. I’m not strong enough for this… why does God think I am?! I can only cling to His promises. He will be my strength. These are just a few of His promises.

This is what we think he had: polycystic or dysplastic kidneys (cysts in the kidneys causing it to enlarge and fail), occipital encephalocele (a water cyst on the rear of the skull), polydactyly (extra fingers), and club feet (I guess… but his feet didn’t look bad to me, although they were a little twisted. I don’t know if it was from being so squished inside of me or just club feet). Feel free to look up those words on wikipedia or somewhere else… that’s what we did. I think that it was the kidney problems that caused his death. Maybe we will have better answers when the results from the chromosome test comes back. The extra fingers and the club feet wouldn’t have caused his death, and from what I’ve read about the cyst on the back of the head, that can be repaired after birth and doesn’t cause any brain problems. If we hadn’t gotten the ultrasound and he had died in the womb and then been born (at home perhaps, as we had planned) then we would have thought that he had died from the big, soft squishy thing on the back of his head… we wouldn’t have known that his kidneys had issues at all. Also, from what I’ve read… the kidney issues don’t always show up (in ultrasounds, etc.) before baby dies. Sometimes baby dies at almost 40 weeks gestation and without doing an autopsy or something, you wouldn’t know why baby had died.

Anyway, it’s just interesting how Elijah’s pregnancy turned out… with the enlarged kidneys showing up early on, no amniotic fluid, me bleeding/placenta abruption, deciding to get induced and then never needing the pit, etc. It’s easy to wonder if we made the right decisions… if we could have done something differently… if we could have saved him. But, I know we have to leave that in God’s hands. May God give us His peace.