Our little man is doing well. We haven't had to clear out his nose since yesterday afternoon. Thank you for all the suggestions. We kept him in his carseat yesterday so he was a bit more propped up. He slept there too. I didn't want to move him into his bassinet that I can't adjust (because it's a pack n play not a real bassinet) to sit up a bit, so he slept in the carseat too. His cele isn't leaking, and hasn't leaked in 5 days now. Praise God. His circulation still seems a bit off, but if we adjust his position it gets better.
Mom Sams goes home today, which will be sad. I wish we could all go to the airport with her, but I am effectively on house-arrest right now as a carseat isn't really safe for Joshua. Some people have suggested doing a Moses basket type carseat and putting him on his tummy, but his cele is too big I think and he doesn't seem to like being on his tummy yet. So in the meantime, I stay at home. That's okay, I don't like being away from him and he can't travel. So I live vicariously through this and other blogs. :)
Oceana is doing well and doesn't seem to have suffered any sibling-jealousy. She does want to get up in my lap sometimes when Joshua is feeding, but doesn't get angry (beyond being told "No.") about it. Her sleeping habits have gotten out of hand over the last week. I think there's just enough going on and we're just a bit careless about bedtimes and naptimes, so that she's not sleeping well when she does sleep. Last night she woke up at 9, 11, and 3. Finally at 3 I brought her in bed with us, because I need to be near Joshua and can't risk falling asleep in her bed. This seems to be the only major effect on her so far. In response to a question from a poster: No, she doesn't understand the situation. She asks (when she sees his encephalocele) what it is. Matt has said "His encephalocele", I just tell her baby has a "special head". She gives him kisses and holds his hands. I don't know how she'll react when he goes to be with the Lord. I'm wondering if she'll forget, in the same way she forgets when a relative visits and then leaves. She has always adjusted to change really well, that will be a blessing to us in the future. We made a point to include Oceana in his life because we don't want her to question us later in life as to why we didn't let her see him, hold him, interact with him. I think that would be mean. I thought about how I'd have felt if my parents had lost a son and not let me hold him or love on him - I'd feel like I missed out on part of my life.
She is such a precious girl. I can't tell you how good it is that she's our first, rather than Joshua. It is such a blessing to have her. Like I've said before, she is our sunshine. She is the light in our day, the encouragement in our lives. We never lack for entertainment in her presence. She calls him "Baby" and "Shah-wuh".
We were offered (thru this blog) to be included in a local photographer's personal project, called 365. You can check it out at http://www.stateofthenation.co.nz/. Brent wants to include Joshua as one of his portrait subjects. I'm really excited about this as we'll receive the digital image. We wanted a friend of ours to take some family portraits with Joshua, but she left on vacation just a day and a half after we came home from the hospital so it never happened. This is really a blessing to us.
My sister Cate arrived yesterday - nearly by surprise. She received a text from a family friend (who had come to visit Joshua several days before) who asked could she get off work because they want to fly her up to see Joshua. Cate had been here for Christmas, but flew home to Invercargill (bottom of the South Island, we live in the upper half of the
I was heartbroken and delighted at the same time yesterday, when I read on Tristan Asher's site (on my list) that Mary Grace Summons was born and passed away the other day. Mary Grace had Trisomy 18, as does Tristan. I've found several women online who are on Trisomy 18 journeys. T-18 babies often die in utero, are stillborn, or pass away quickly after birth. There are only a few cases of children over 10, most won't make it to their 1st birthday if they do survive birth. Mary Grace had 7 hours with her 2 big sisters and her parents. What a gift to spend time with her, but how heartbreaking to lose her. I thought this was what we'd be walking through. My heart goes out to this family, who know the same God I know. I know they find (some) comfort in knowing she's with Jesus. But it's still heartbreaking.
I was telling my mom last night about how some people keep wanting to "fix" Joshua. My mom and my sister were remarking on how I have the best attitude of anyone, in regards to Joshua.
Ok, well it doesn't feel like it... but here's what I think.
Joshua is with us for a time. And it's what's supposed to happen. I wish it wasn't happening, I want this situation to have a different outcome. But Joshua has a rare and severe defect. There are some encephaloceles that can be repaired quite easily - with minimal damage to the brain. Some children (with smaller and differently presented celes) go on to live a normal life without any mental deficit. But...this isn't the case for Joshua, as his is an extremely large occipital encephalocele. It is a MIRACLE that Joshua carried to term, was born alive, and is still with us after a 9 days. Everyone (including us) wishes there was something that could fix it (like reconstructing his skull, putting his brain back inside, etc). We all wish there was an answer in this situation. But there's not. It's not as though someone's going to say just the right thing one day and I'll say, "OH THAT'S WHAT'S BEEN MISSING! I wish I'd known that before now, because now this whole thing makes sense. I know why this happened!" There's not an answer, and that's ok. I wish there was - believe me! You think you love Joshua? You think you want Joshua to live? Multiply that by a million and you'll be close to how much I want it!
But there's no answer, there's no fix. We're doing Comfort Care for Joshua. And there's nothing wrong with that. It is not wrong to do that. It's not wrong to stop SEARCHING for an answer. We've looked, we've researched, we've done doctor's appointment upon doctor's appointment. We've been to see 9 doctors (one way or another) and several midwives. We've exhausted the possibilities. There aren't any good ones. And it's okay. We want to enjoy the time we have.
And we are enjoying it.
Who wouldn't enjoy this little face?
And as a side note: The reason we can't upload a lot of photos is not because of blogger, but our internet company. We have a 10gig upload/download limit per month, otherwise we get an additional charge for each gig we use. So we're close to our limit and have another 9 days before it rolls over. Thank you for the offers to help though!