I've had several friends mention my lack of blogging lately. I know. I'm not going to say it's because I've been busy. I'm not going to say it's because I don't have anything to say. The truth is, it is hard to write when I grow weary of my own thoughts and emotions. I don't want to complain. I don't want to live in sadness, nor do I want to constantly feel like I have to force myself to stay positive. Well, I suppose I do the latter is just part of how I handle our situation. And in truth, it isn't always forceful. There are so many beautiful things and people in our life. It is just hard. And I feel like such a whiny baby when I complain about how crappy things are for us. Yes they are hard. Yes others have it more difficult throughout the world. Much, much, more difficult. It is both challenging and easy to maintain perspective. We see so much sadness in the lives of others, and while we sometimes feel like we have a bum deal too, we are energized and comforted by our perfect family and all the love around us. So I often feel conflicted about my feelings. How's that for a mouthful?
We have been off and on sick for the past month. Fortunately, Norah hasn't had to make a trip back to the PICU. We, along with the staff at South Davis are pretty aggressive at doing what we need to keep her from going downhill. That has meant steroids, albuterol when she's wheezing, extra suctioning, extra vitals, and extra measures towards preventing the spread of illness. Jeff has had to make some solo visits, and Norah is (sort of) getting used to seeing me with a mask. She hates the mask. I think she is a bit afraid of it, being that masks and gowns at SDCH typically mean that a trach change is coming. She tries to pull it off my face, and sometimes she cries, but I do what I can to remind her that I'm not going to do anything mean, and that I am just going to play and cuddle. The other good news is that she is still doing 11-hour sessions every day on the home ventilator. She needs to tolerate it 24/7, then also grow big enough so the FDA will "let" us take her home for good. She is up to 7.3 kg (16 lbs), and she needs to be 10 kg (22 lbs)... which is proving to be slow-going. The unfortunate thing is that the respiratory director still considers her to be the most fragile (respiratory-wise) in the entire hospital... and that is with a handful of newer babies that use the ICU ventilator, too. Hopefully he only says that because he is so attached to Norah, and has seen how scary things have been with her. After all, he was one of the key people that helped bring her back to us on quite possibly the worst day of our lives.
Norah is so funny lately. She loves to hang upside down off of her Boppy pillow or my lap. She laughs, she plays, and she is so very smart. She rolls everywhere in her crib, as well as sits up in it. I'm sure it's just a matter of time before we have to start putting the rails all the way up to the top. I hate that - it's sort of like a cage. She is still the cuddliest girl in town, she still loves to play with Harper's cars, and give him a smack when he tries to hug or kiss her. She always has mischief all over her face. She is social, but she demands that all new people earn her respect and attention. She is 20-months going on 20-years. I love her.
We are preparing Harper for kindergarten. I made a chart for him to put up stickers when he completes a kindergarten-type activity. So far it has been working out great. Just yesterday, we got crafty by each drawing pictures of our family of five (I am not pregnant - Norah's ventilator is our fifth family member). Next - and this is the big one - will be social activities. I've been on the hunt for local community activities that we can go to... hopefully I can find some that will work with our crazy schedule. We recently did the "Kindergarten Round-Up" at his school. He was super shy at first, but by the end of it, he was ready to run around with the other kids.
Both of our kids are really growing up so fast. I just can't wait to get them both under the same roof for more than a few hours.
We have been off and on sick for the past month. Fortunately, Norah hasn't had to make a trip back to the PICU. We, along with the staff at South Davis are pretty aggressive at doing what we need to keep her from going downhill. That has meant steroids, albuterol when she's wheezing, extra suctioning, extra vitals, and extra measures towards preventing the spread of illness. Jeff has had to make some solo visits, and Norah is (sort of) getting used to seeing me with a mask. She hates the mask. I think she is a bit afraid of it, being that masks and gowns at SDCH typically mean that a trach change is coming. She tries to pull it off my face, and sometimes she cries, but I do what I can to remind her that I'm not going to do anything mean, and that I am just going to play and cuddle. The other good news is that she is still doing 11-hour sessions every day on the home ventilator. She needs to tolerate it 24/7, then also grow big enough so the FDA will "let" us take her home for good. She is up to 7.3 kg (16 lbs), and she needs to be 10 kg (22 lbs)... which is proving to be slow-going. The unfortunate thing is that the respiratory director still considers her to be the most fragile (respiratory-wise) in the entire hospital... and that is with a handful of newer babies that use the ICU ventilator, too. Hopefully he only says that because he is so attached to Norah, and has seen how scary things have been with her. After all, he was one of the key people that helped bring her back to us on quite possibly the worst day of our lives.
Norah is so funny lately. She loves to hang upside down off of her Boppy pillow or my lap. She laughs, she plays, and she is so very smart. She rolls everywhere in her crib, as well as sits up in it. I'm sure it's just a matter of time before we have to start putting the rails all the way up to the top. I hate that - it's sort of like a cage. She is still the cuddliest girl in town, she still loves to play with Harper's cars, and give him a smack when he tries to hug or kiss her. She always has mischief all over her face. She is social, but she demands that all new people earn her respect and attention. She is 20-months going on 20-years. I love her.
We are preparing Harper for kindergarten. I made a chart for him to put up stickers when he completes a kindergarten-type activity. So far it has been working out great. Just yesterday, we got crafty by each drawing pictures of our family of five (I am not pregnant - Norah's ventilator is our fifth family member). Next - and this is the big one - will be social activities. I've been on the hunt for local community activities that we can go to... hopefully I can find some that will work with our crazy schedule. We recently did the "Kindergarten Round-Up" at his school. He was super shy at first, but by the end of it, he was ready to run around with the other kids.
Both of our kids are really growing up so fast. I just can't wait to get them both under the same roof for more than a few hours.
I know where you are coming from on this post. Life does move on and you have the odd day that is worse than others and you don't want to complain online or look ungrateful at the hand life has given you as you are doing ok with the majority of it all. You are going through bigger obstacles than a lot of families have ever known or ever will know. You do a hard job and do what you can so big hugs to you. xxxx
ReplyDeleteIt's great to hear both kiddo's are getting on wonderfully. They do grow up fast.
Can't be alone with your own thoughts? You're more like your brother than you probably want to admit. However you're far more responsible, respectable, kinder, have better hair, smell nice, teeth are straighter, and your best friend isn't a dog that only plays with you because somebody tied a pork chop around your neck.
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