Monday, October 31, 2016
To go to the floor or not...
Our doctors have gone back and forth ALL day about sending our Addy to the floor, basically a step down from ICU. Finally, they said they are looking for reasons to keep her here. First she had a murmur that they were worried about, it turned out that her heart has actually improved function. Next her NJ tube became an NG tube, it was supposed to be deeper but curled up in her stomach, turns out she's fine having it in her stomach. Next they are concerned that she hasn't lost enough fluid, then they are worried that she has lost too much so they give some back. Now her heart rate is a little high and they'd like to monitor it here, just in case. My open interpretation is that they are all grieving the loss of a precious little one and they are trying to protect her.
HLHS
Another HLHS baby earned her wings today and our hearts are breaking for them. She was four days older than our Addy and we have been following her progress from the start. We have had the privilege of getting to know her parents and having their support as our baby has gone through the same things. Our hearts are heavy for them and the tears keep flowing.
Sunday, October 30, 2016
Just want our family together
Last night we started to hit our breaking point. Four walls were closing in on us. We went on a much needed date. It was great to get out of the hospital but we realized we just want to have all our kids together. Afton, one of our twins has the stomach flu. It's no fun but it also makes visiting almost impossible. Our sweet doctor and nurses sent us home today to spend some time with our children. We were SO careful but can't wait to see them again, I have never felt so torn.
Addy is doing much better and will probably move out of ICU tomorrow. I'm grateful that I can see the light at the end of the tunnel. She requires almost no oxygen so I am praying that we can go home without it. She's sleeping comfortably for the first time in a couple of days and it's a relief to watch her breathing normally.
Addy is doing much better and will probably move out of ICU tomorrow. I'm grateful that I can see the light at the end of the tunnel. She requires almost no oxygen so I am praying that we can go home without it. She's sleeping comfortably for the first time in a couple of days and it's a relief to watch her breathing normally.
Echo
Our little Addy is getting an Echo now and her heart looks great. We are so grateful that her heart is doing well. She does have a collapsed lung but she doesn't look like she's struggling so they decided that most likely she has acid reflux and is aspirating. Her tube is being moved back to the NJ but this seems to be the name of the game with kids that have HLHS. In fact our doctor just told us that we've moved to the next stage, feeding issues.
Apparently she has been doing so well that everyone had assumed she'd go to the floor today so they were discouraged that she'll be here one more day. Their discouragement didn't pass to us, we are just happy that she is stable and progressing.
Our bright news of the day is that they want us holding her as much as possible and moving her around, this will help her clear our her lungs. They know that these babies need to be held more so they are really supportive, yay!
Apparently she has been doing so well that everyone had assumed she'd go to the floor today so they were discouraged that she'll be here one more day. Their discouragement didn't pass to us, we are just happy that she is stable and progressing.
Our bright news of the day is that they want us holding her as much as possible and moving her around, this will help her clear our her lungs. They know that these babies need to be held more so they are really supportive, yay!
Saturday, October 29, 2016
Wet lungs
We had a rough night for us but overall not awful. Addy is not getting enough fluid off so overnight her lungs got wet. We noticed her breathing last night before leaving for the night but we assumed it was pain, so she was given pain medicine, it turned out she needed a higher dose of diuretics. We have been holding her today and trying to get her comfortable enough to get some sleep. Luckily she has slept well.
We missed morning rounds by about five minutes but it didn't matter, all the doctors were upset that her swelling was missed so we have seen a LOT of them this morning. The surgeon is on call this weekend and has already been by a few times to check on her. He is frustrated that she will not be able to leave ICU until Monday, he had anticipated tomorrow, either one are a big deal to us.
We missed morning rounds by about five minutes but it didn't matter, all the doctors were upset that her swelling was missed so we have seen a LOT of them this morning. The surgeon is on call this weekend and has already been by a few times to check on her. He is frustrated that she will not be able to leave ICU until Monday, he had anticipated tomorrow, either one are a big deal to us.
Friday, October 28, 2016
Daddy Loves
There is nothing like the bond between Daddy and Daughter. He finally got to hold her after her surgery.
So fantastic!
It took us a little bit to get comfy and we had to fix a few kinks but then I got to hold her for two hours!!
Subscribe to:
Posts (Atom)