Good news: we are FINALLY home (though it took all day, and Iggy has to go back to the pharmacy tonight to pick up his meds because they weren't ready).
Bad news: Magnus has to be on oxygen all the time, for the foreseeable future.
We are pretty devastated. We have to give up our nanny share with the nanny we love, who HE loves, and who loves him. And now we have to scramble to find someone who can take care of a baby who is attached to an oxygen tank. The longest he's allowed to be off the oxygen is for 2 hours.
I was trying to cheer us up, and said to Iggy "hey, remember when we thought getting a G tube was the end of the world? And now it just seems normal." And then Iggy pointed out "it's not just the oxygen, it's what the oxygen represents." Yeah. The fact is, Magnus is not doing well, and now all you have to do is look at the cannula on his face to see it. But between the oxygen and the meds, it's still possible things could turn around for him. Through all of this, I keep remembering the neonatologist who told us when I was 26 weeks pregnant that we should just induce labor and let nature take its course because there was no way I would carry him to term. She was wrong. And this time, his doctors aren't giving up on him, but they are definitely worried. As are we.
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7 years ago
I'm glad you guys are home but so sorry to hear about the oxygen. I'm thinking of you and sending lots of love your way. I know it's impossibly tough but the oxygen also represents Magnus getting the care he needs to grow stronger and healthier. Please give Magnus lots and lots of kisses for me.
ReplyDeleteI'd like to think they sent Magnus home because they believe he can recover better there. He continues to beat the odds. Please take care of yourselves. You are very much in our thoughts. Sending love.
ReplyDeleteWe're thinking of you guys over here, and glad Magnus is back home, even if he's stuck with the oxygen. Hugs from us.
ReplyDeleteOh, Jen. Hoping so hard that things improve.
ReplyDeleteJen, we are so sorry to hear of this setback, and certainly hope things do turn around for your little guy quickly. Much love to all three of you.
ReplyDeleteI am relieved to hear that Magnus is back home where he belongs. I wish there was more that those of us who care so much for the three of you could do to ease some of your worry. Sending plenty of love and warm thoughts your way.
ReplyDeleteCan't wait to get out there and hold that dear little boy, and keep in mind that we're there to relieve you in any way that we can. If you can possibly do so, do try to do something nice for yourself in the coming days. Your batteries must be running on low, and they need to be recharged. Thinking of you guys and hoping that Magnus adjusts well to the oxygen.
ReplyDeleteI will not even pretend I know how you feel but I will tell you this. I know a little boy with HLHS (he sees the same drs & surgeon as C)and he only has one functioning lung. I know he was on 02 for a very long time but at 2 and 1/2 and post fontan he is not on 02 and is doing great. I do know when all else seems lost there are little chd warriors out there who keep beating the odds. If you would like to read some of their story, their carepage is Noah's Quest (it was set up through All Children's Hospital in St. Pete, FL). Every time I feel down and scared out of my mind, I take a look at Noah and I feel such hope. I hope you all get some much needed rest now that you are home and that Magnus just continues to improve.
ReplyDeleteWelcome home, little man!
ReplyDeleteI'm sorry to hear about this latest obstacle. I have great faith in Magnus and his parents, though, and continue to hold you all in my thoughts and heart.
I've been trying to think of what to say and I still don't know how to say what I want to. It sucks that this happened, and I wish we could magically make everything better for you guys. But at the same time, I can't help but cheer him on because Magnus has been beating the odds since before he was born. The strength and love that you have shown and given him will always be the best medicine, and I am so, so glad that he's gotten to come home to be surrounded by that. Fingers crossed for lots of good news in the very near future.
ReplyDeleteWow Jen, it's been a couple weeks since I've checked in on your blog & I am shocked at all the catching up I had to do. I am so sorry for the roller coaster you've been on. To think about little Magnus going through so much brings tears to my eyes. I have tears in my eyes for you & Iggy too. I wish there were something I could do for you. If you think of something, please let me know!
ReplyDeleteWe will be at the cath lab January 7th...sounds like it wouldn't be totally out of the question to see you there too. You mentioned previously, going back after the holidays for a follow up cath.
You are definitely on my mind & I truly hope that things start looking up.
Hang in there, you have a lot of people pulling for you!
I am hoping that the need for extra oxygen is temporary, and that giving Magnus and his heart a bit of a break will work in his favor in the long run. I wish we lived closer so that we could help you out with daycare.
ReplyDeleteThanks so much for the words of encouragement, everyone. We are so lucky to have so many people rooting for us.
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