Luka continues to improve day by day. He is now off of all his sedation and anxiety medication. That's super exciting, though it makes visiting him a little more frustrating because we have to be extra careful not to stimulate him too much. If we talk to him to much, or touch him too much, his heart rate gets too high and we have to back off. Nurses keep scolding us for stimulating him more than we mean to. They let us wipe his mouth (it gets foamy because of the feeding tube), but then fuss at us for wiping "too much". Sometimes all we are allowed to do is sit and look at him. Yesterday they did allow us to hold him for a few minutes, and overall he tolerated that well. For us, it was so awesome.
I pretty much cry like a crazy person the whole time we visit him. It's pretty embarrassing. It just so stressful to have him there, hooked up to machines and having other people take care of him. But whatever it takes to make him well enough to come home.
The CPAP mask looks worse than it is. It's definitely a step in the right direction from the ventilator tube he had, though the mask covers up his darling little face.
He's foamy because of the CPAP and the feeding tube.
I can't wait until he's stable enough for us to interact with him more without disrupting his heart rate too much. Then he can have family visits, too. His next steps are to get rid of the CPAP mask and graduate to a nasal cannula, then attempt mouth feedings. Exciting!
This must be such an emotional roller coaster for you! You seem to be handling things incredibly well, considering. I would be a nut case, I think, and I'm not even maternal! Well, to humans, anyway.
ReplyDeletethinking of you guys often......stay strong...he will be home and in your arms before you know it!
ReplyDeleteI am so happy that he is doing better! I think about the three of you everyday, it must be really hard what you are going through. Hopefully from now on it will only get better.
ReplyDeleteI'm sure your arms are aching to hold him.I'd be crying all the time, too. Each day he seems to be making such good progress, though, I'm sure it won't be long before you can hold him as much as you want/need/like to. Our thoughts are with the three of you every day.
ReplyDeleteThank you so much, everyone. We really appreciate the kind words.
ReplyDeletei just want to add, leigh and ken, that mariann and i are thinking of you all right now... keeping up with your blog and keeping you all in our hearts. i wish that there was more i could do from here in nyc, but i guess all we can do now is send you our healing thoughts and promise luka that one day in a few years, you can all come visit us and we'll show luka nyc the way he is supposed to see it. <3
ReplyDeleteThank you Jasmin and Mariann xoxo
ReplyDeletehe is so dang cute and little! and he's doing better! and you two are holding together amazing. i can't tell you how sorry i am to think of the stress of this beginning for you guys. but it sounds like he's slowly gaining strength and that's the point. this will someday be a distant memory, it will! we love you all.
ReplyDeleteI just started reading your blog now -- as i was researching about vegan pregnancy. I want to say that I am so sorry your family and little one had to go through this. I am also so very much hoping that all turned out well (I’ve not finished reading your blog – but I pray that they did).
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