JETT
Again my baby was looking better today. Tummy and fluid going down every day.. He was again very active today.. He had his rate increased on his vent today because he was having brady's and his sats were down, but apart from that he was good.. I left for quiet time, then when I went back he was having a cannula resited because it had tissued. I can't describe how that feels, to know that your son is about to be put through pain and you can do nothing about it.. Then he had his tube retaped.. More trauma :( I was just a bawling mess, and haven't quite got over it, even though he is totally settled and his sats are good.I know he needed the procedures to be done, but it doesn't make it any easier. I wish I could protect him from all this..
His tube did need to be retaped, that's probably why he was swinging from low to high with his oxygen..
Other news he loves his dummy, as you can tell by the picture :)
Last night I spoke with a Dr who confirmed that if Jett does in fact have a stricture which they are almost certain he does, he will need surgery. For now though because he is so unwell, they are treating him very conservatively. He will have to have the contrast x ray as soon as he is stable, then we'll take it from there. Surgery is a very frightening thought..
MUMMY
Mummy feels like shit. I hate that my baby is going through so much.. I am also losing patience with people. I KNOW there is no possible way to understand what this is like unless you have been here, but seriously, people have no idea.. The amount of times I have heard "Oh that's great Jett's doing well, you must be happy" Umm, doing well, is simply just something I say.. Doing well, means he is not dying today. Doing well means he is alive and isn't having to have a lifesaving procedure this minute..
What's really happening? His lungs, heart and gut all have problems.. Sure they are common problems in premature babies but that doesn't make it any easier. I know bubs are resilient, but again there is always that moment when something is happening when I think "what if he doesn't pull through this" Everyone says "Think positive" I am trying, but it is easy for other people. They aren't there, they aren't living this.. *Sigh.. I should stop ranting, I have a lot of support which I am grateful for, but in all honesty sometimes I feel like I am telling people what THEY want to hear, simply because I don't want to hear them crap on about how terrible it is and how hard it is.. It isn't black and white, people think he's either good or bad, truth is, he's not ok, but he's not, not ok.. Not sure if anyone will have a clue what I am on about, but that's my vent over... I could crap on about this for days... Time to express :P
ETA: I sound all over the shop when I just read that back.. I don't know how I want people to react.. I just wish my son was born at term with no health issues and I got to take him home...
Rant away!
ReplyDeleteYou make perfect sense and to be honest I am surprised you held it all in that long!! Who are these people you are talking to anyway? If they are important to you, then no doubt they will respect your space and be following your blog closely. If they are randoms then politely excuse yourself and be on your way - you don't have to explain yourself!
I did not take any phonecalls during my 5 months there, except to Matty. I rang people as I needed them, I updated noone - only thru my blog. I found if I updated about, say, a desat day, then a week later they ask me about that desat day when I next talk to them .. but you know how much can happen in a week! ie desat is gone, since then we have done bradys, changed a med and are suss on something else .. blah!! It's so full on!!
I did text messages only .. but loved my blogging like you do :)
Sure 'Jett's well and your happy" .. pffft ... there is no such thing as 'happy' in the NICU, just good days - even great days! But these days are just breathers, recovery days really, considering the whole journey.
You are doing amazing Abby. You are alive, healing, and very present with your son. No, you don't know what longterm health stuff you will have or not have with Jett, and saying 'don't worry about that now' doesn't make it any easier. Does it help you to hear that my boys have NONE of the longterm stuff threatening them at the time? Except for slow development in on of my twins. I honestly believe it is because I was THERE .. never underestimate your love, your time, your just BEING THERE while he sleeps. Medicine can only do so much. He needs you to live .. and because of you he will thrive.
My heart goes out to you gorgeous Mumma xX
Abby honey, speak freely. I can never understand fully what you're going through. Hell, you and I both know the horror of being in ICU ourselves. But- I can't imagine the anguish at watching your baby go through this. I wish I had the words to offer some comfort, but I just don't. Stay strong. You inspire me daily to be a better mother to my son. I desperately want a happy ending for you. I even caught myself praying for you, despite being intensely non-religious. I'll continue to do so. Know you're in my thoughts always. Sending you strength and courage to see you through. I wish I could do more.
ReplyDelete-Forshelby.
Suzi... I love the last part of your comment.... and Abs... you are doing such a great job of being his mummy, he picked the most perfect mummy for him that he could and he picked YOU!!!! I love you and I pray that everything just powers along and you have him home before you know it and he's a healthy little guy. xoxo
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