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So this is not something I usually post because it involves something deeply personal about my pregnancy.
In early December we found out that our son is suffering from Congenital Diaphragmatic Hernia (CDH), where his diaphragm didn't full close. He is left with a hole in his diaphragm, allowing the organs in his abdomenal cavity to move into his chest cavity, restricting the growth of his lungs and affecting the positioning of his heart.
So far a portion of his intestines, most of his stomach, and now a portion of his liver is sitting in his chest cavity.
He'll need surgery with in days of birth to move the organs back into his abdomen and repair the diaphragm. He is expected to stay in the nicu a minimum of five weeks but could be up to 3 months or more, depending on his progress during pregnancy and how he responds and heals post surgery.
We hope to stay as much time as possible in the NICU with him during his time their.
And thats why I am posting this link today. Its hard for me to ask others for help, especially financial. It would mean the world to us if you could donate money so we can be there for our son.
Donations would go toward loss salary while staying with our son in the NICU, transportation to and from the hospital, food while staying there. Also the money would go toward things needed when we bring him home from the hospital, like the possibility for oxygen needs, feeding tubes and formula, medication, and other monitoring equipment he may need. Additionally, depending on how his hernia progresses before birth, we may need to relocate out of state and we want to be able to have that option to give him the best care.
@robert-the-foul @r0bilargreenleaf
If you can not donate, please share. I’ve provided two different fundraising sites:
Our baby has been diagnosed with congenital diaphragmatic hernia (CDH), a serious condition that will require specialized care and a prolong
Our baby has been diagnosed with congenital diaphragmatic hernia (CDH), a se… tiffany F needs your support for Help Us Be Present For Our CD
Im not producing enough milk for him 😭
Hes gone through my stash at the hospital and now whatever I produce and home and bring in they prep, then supplement with hypoallergenic formula when they run out.
Been trying to go from pumping every three hours to every two hours, or try to and have a stretch of sleep at night. But it’s difficult 😭.
Since starting the occasional nursing my supply increased a bit but not enough yet, especially since it’s not him exclusively nursing. And nursing sometimes ends up being after cares when hes still too agitated to nurse.
Today he did good, until he vomited a bit after we finished the five minute segment of nursing they have me cleared for. He also vomited earlier today before we arrived .
It’s a great thing though that hes “eating” and growing.
They have compressed his feeds to steady flow over two hours in one hour off.
Staying at 1L of low flow oxygen. The surgery team wants his feeds to weaned further before reattaching his intestines. Seems like they’re moving goal posts which is frustrating. They should’ve just said these things from the beginning , it would’ve caused us less annoyance. Especially since we were expecting to have surgery done soon after hitting 2L of oxygen which happened some time ago and possibly having him home by husband’s birthday in mid August. Which they said was doable . But now it’s still uncertain based on their new goals and it’s up to our son’s ability to tolerate it.
Surgery set so far for august 18th, they may try sooner but its set for that date (funny, 18th is an important day for me, my birthday, my sisters and cousins birthday, met my husband in person on an 18th, and chose to get married on an 18th). Recovery probably up to two weeks after but still no idea on discharge. Just very frustrating.
Think tonight or tomorrow hes getting moved to a window room! Luxury. lol, hope it’ll be good for him with natural light and perhaps have him looking out on occasion possibly, if his feeding and refeeding machine and his oxygen tube has some slack to do so. speech pathologist will have to observe him swallowing milk through a bottle and watch through X-ray to see if there’s any issue that could inhibit his ability to take feeding orally.
The speech pathologist tried bottle feeding but he vomited. Hence the full swallow study. they suspected trying too large a volume too soon for him to truly handle.
Hope he is able to fully feed orally.
To the person who donated a thousand thank you so much.
I appreciate every single person who has donated, you’ve helped us to visit our son everyday (and eat while were there)when we can(only reason we don’t visit is whenever we are sick).
Well then. They want to transfer him to another facility until his surgery in mid august. They say he doesn’t exactly need the nicu level of care (hes still on low levels of oxygen and is getting most feeding by tube and still has his ostomy bag and refeeding going on ) . They say he swallow study shows he is aspirating his food when he drinks the bottle. They’ll work on smaller amounts for feeding for now, that’s what they’ll help him on at the other facility too.
The Neonatalogist said to convalesce and work on nippling before surgery.
They’ll transfer him back for that but why can’t stay in one place. Plus the dangers of transferring .
One location is near the hospital he’s currently in, the other is further north in the city near where my parents live but it also had multiple kids to a big room.
It’s good that he doesn’t seem to need the intensive care but ugh this is stressful.
Strange , no one on the team knows what I was told over the phone . Nothing in his chart, the night nurse or one of the doctors on for tonight knows what I was talking about when mentioning the transfer of hospitals. Strange as fuck.
What....?! That is so strange. Definitely be getting everyone's full names now who tell you things because that's wild no one knows who told you that???? 😮 But I guess is that good he's not transferring now?
Turns out they do want to transfer . The night docs and nurse wasn’t updated i guess.
The hospital we’re currently at is level 4 nicu and he no longer needs that level of care, and they claim the other floors can’t do his refeeding through his lower intestine that’s exposed. And they claim the one they suggested that’s closer to the hospital can’t handle it either, so it’s the pediatric hospital that’s closer to my parents house . Both locations would work on rehabilitation with feeding and building up the motor skills and milestones for hus age I guess but it is opened and not private rooms like he has now but ugh.
And we won’t be able to accompany him to the hospital in the ambulance.
Then there’s the finding out the options for milk drop off and if Im able to get free meals for breastfeeding like I am here.
Ugh again.
😭🫂🫂🫂 I'm sorry that is so much changing ! I'll continue praying. I'm surprised about the not a private room anymore thing though with the level of care he still does need... wow. 😞 It will be okay though! I'm sure they will be accommodating considering the circumstances. If it's a full facility with a kitchen that does meals I can't imagine why they wouldn't have mesls available if you're there breastfeeding. That's kind of ridiculous about the ambulance transfer though. I don't get why one of you can't just be there it's not like you would be doing anything besides sitting...I don't understand how they can say you can't do that it seems like a legal thing to me has the hospital explained fully why it's not allowed?? Honestly I'd contact someone who knows law for an opinion bc that's wild to me. I get that he's in their care but you are his parents! Is it a very long drive? I'm so surprised they're saying you can't go with. 😭
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So this is not something I usually post because it involves something deeply personal about my pregnancy.
In early December we found out that our son is suffering from Congenital Diaphragmatic Hernia (CDH), where his diaphragm didn't full close. He is left with a hole in his diaphragm, allowing the organs in his abdomenal cavity to move into his chest cavity, restricting the growth of his lungs and affecting the positioning of his heart.
So far a portion of his intestines, most of his stomach, and now a portion of his liver is sitting in his chest cavity.
He'll need surgery with in days of birth to move the organs back into his abdomen and repair the diaphragm. He is expected to stay in the nicu a minimum of five weeks but could be up to 3 months or more, depending on his progress during pregnancy and how he responds and heals post surgery.
We hope to stay as much time as possible in the NICU with him during his time their.
And thats why I am posting this link today. Its hard for me to ask others for help, especially financial. It would mean the world to us if you could donate money so we can be there for our son.
Donations would go toward loss salary while staying with our son in the NICU, transportation to and from the hospital, food while staying there. Also the money would go toward things needed when we bring him home from the hospital, like the possibility for oxygen needs, feeding tubes and formula, medication, and other monitoring equipment he may need. Additionally, depending on how his hernia progresses before birth, we may need to relocate out of state and we want to be able to have that option to give him the best care.
@robert-the-foul @r0bilargreenleaf
If you can not donate, please share. I’ve provided two different fundraising sites:
Our baby has been diagnosed with congenital diaphragmatic hernia (CDH), a serious condition that will require specialized care and a prolong
Our baby has been diagnosed with congenital diaphragmatic hernia (CDH), a se… tiffany F needs your support for Help Us Be Present For Our CD
Im not producing enough milk for him 😭
Hes gone through my stash at the hospital and now whatever I produce and home and bring in they prep, then supplement with hypoallergenic formula when they run out.
Been trying to go from pumping every three hours to every two hours, or try to and have a stretch of sleep at night. But it’s difficult 😭.
Since starting the occasional nursing my supply increased a bit but not enough yet, especially since it’s not him exclusively nursing. And nursing sometimes ends up being after cares when hes still too agitated to nurse.
Today he did good, until he vomited a bit after we finished the five minute segment of nursing they have me cleared for. He also vomited earlier today before we arrived .
It’s a great thing though that hes “eating” and growing.
They have compressed his feeds to steady flow over two hours in one hour off.
Staying at 1L of low flow oxygen. The surgery team wants his feeds to weaned further before reattaching his intestines. Seems like they’re moving goal posts which is frustrating. They should’ve just said these things from the beginning , it would’ve caused us less annoyance. Especially since we were expecting to have surgery done soon after hitting 2L of oxygen which happened some time ago and possibly having him home by husband’s birthday in mid August. Which they said was doable . But now it’s still uncertain based on their new goals and it’s up to our son’s ability to tolerate it.
Surgery set so far for august 18th, they may try sooner but its set for that date (funny, 18th is an important day for me, my birthday, my sisters and cousins birthday, met my husband in person on an 18th, and chose to get married on an 18th). Recovery probably up to two weeks after but still no idea on discharge. Just very frustrating.
Think tonight or tomorrow hes getting moved to a window room! Luxury. lol, hope it’ll be good for him with natural light and perhaps have him looking out on occasion possibly, if his feeding and refeeding machine and his oxygen tube has some slack to do so. speech pathologist will have to observe him swallowing milk through a bottle and watch through X-ray to see if there’s any issue that could inhibit his ability to take feeding orally.
The speech pathologist tried bottle feeding but he vomited. Hence the full swallow study. they suspected trying too large a volume too soon for him to truly handle.
Hope he is able to fully feed orally.
To the person who donated a thousand thank you so much.
I appreciate every single person who has donated, you’ve helped us to visit our son everyday (and eat while were there)when we can(only reason we don’t visit is whenever we are sick).
Well then. They want to transfer him to another facility until his surgery in mid august. They say he doesn’t exactly need the nicu level of care (hes still on low levels of oxygen and is getting most feeding by tube and still has his ostomy bag and refeeding going on ) . They say he swallow study shows he is aspirating his food when he drinks the bottle. They’ll work on smaller amounts for feeding for now, that’s what they’ll help him on at the other facility too.
The Neonatalogist said to convalesce and work on nippling before surgery.
They’ll transfer him back for that but why can’t stay in one place. Plus the dangers of transferring .
One location is near the hospital he’s currently in, the other is further north in the city near where my parents live but it also had multiple kids to a big room.
It’s good that he doesn’t seem to need the intensive care but ugh this is stressful.
Strange , no one on the team knows what I was told over the phone . Nothing in his chart, the night nurse or one of the doctors on for tonight knows what I was talking about when mentioning the transfer of hospitals. Strange as fuck.
What....?! That is so strange. Definitely be getting everyone's full names now who tell you things because that's wild no one knows who told you that???? 😮 But I guess is that good he's not transferring now?
The student said Bertazzo told her, “You know what you have to do, carry on,” before taking off his headset and seatbelt, opening the door and jumping out of the plane, TN reported.
おはようなの!
Good morning!