Parents of lost babies and potential of all kinds: come here to share the technicolour, the vividness, the despair, the heart-broken-open, the compassion we learn for others, having been through this mess — and see it reflected back at you, acknowledged and understood.
Thanks to photographer Xin Li and to artist Stephanie Sicore for their respective illustrations and photos.
Sorry for cross-posting, but I want to get through to as many Glow parents as possible.
I am writing on behalf of Sarah, Sam and Tikva's Mom. She sends her deepest gratitude for everyone's thoughts, and is touched that so many of us want to do something helpful for her. Little Tikva is hanging in there, she has responded well to another round of strong antibiotics, and her infection markers are coming down...though Sarah and Hannes are not sure if this reflects the situation with her CMV or something secondary. Tikva has returned to some oral feeds (which is HUGE), but she is losing weight at a worrying rate.
As you can imagine, this state of constantly oscillating between good and scary is wearing Sarah and Hannes down. I am shivering to think of how many similarities Tikva and Raahi have -- this time, last year, Raahi was going through the exact same thing. She was taking some oral feeds, but losing weight, and one good thing was followed by something scary in a matter of hours. We didn't know what to think, and I know only too well how beaten Sarah and Hannes must feel. From the day Tikva was born (Raahi's first birthday; she was due the day after Raahi was), and had surgery for the same thing as Raahi did, Som and my deepest prayer has been "May their similarities end with their birth and surgery." I wish we all lived closer to Sarah so we could huddle around her through these scary days.
Sarah is connecting with Le Petit about the meal service that some of you have been talking about. She is thinking about it, since the hospital is 30 kilometers from where they live, and given they are always running, she has no idea where to get it delivered.
I had asked her when I mentioned the meal delivery service if there might be anything else we can help with. She had mentioned that they are researching like crazy about the best place for Tikva with regards to her care, so I had asked if she needs help with that, maybe, to ease some of it? Here's what Sarah says she needs. For those of you who are doctors and/or have a background in bio fields, or may have friends or family who are experts, or know someone through someone, "if anyone knows of someone ANYWHERE who can shed light on CMV infection in pre-term infant, we would be so interested to look at their research and/or contact them."
Sarah says that they are pretty disappointed with NHS, and would even travel to any other country as soon as they can (they are getting Tikva's citizenship registered, and her passport ready, and England is not their long-term home anyways), in order to get Tikva better care. She writes: "Here, no one can tell us anything about how this infection will affect her long-term, if she might have devastating brain damage later on, even if she appears ok now." We can only imagine what not knowing more and only having to silently watch can do to parents, and I was hoping someone among us will know something, or can find out?
Can we pull together our resources and our social networks to get Sarah information (both research as well as practices in hospitals all over the world, wherever we are) on long-term complications of and care for CMV in a pre-term infant? If you post here, I will compile all information and send it to her in an email. Or if she prefers, she can always come and check on Glow.
I know she would be grateful, and I am, too. Please let me know if you have any questions, and thanks guys!
Sorry for cross-posting, but I want to get through to as many Glow parents as possible.
I am writing on behalf of Sarah, Sam and Tikva's Mom. She sends her deepest gratitude for everyone's thoughts, and is touched that so many of us want to do something helpful for her. Little Tikva is hanging in there, she has responded well to another round of strong antibiotics, and her infection markers are coming down...though Sarah and Hannes are not sure if this reflects the situation with her CMV or something secondary. Tikva has returned to some oral feeds (which is HUGE), but she is losing weight at a worrying rate.
As you can imagine, this state of constantly oscillating between good and scary is wearing Sarah and Hannes down. I am shivering to think of how many similarities Tikva and Raahi have -- this time, last year, Raahi was going through the exact same thing. She was taking some oral feeds, but losing weight, and one good thing was followed by something scary in a matter of hours. We didn't know what to think, and I know only too well how beaten Sarah and Hannes must feel. From the day Tikva was born (Raahi's first birthday; she was due the day after Raahi was), and had surgery for the same thing as Raahi did, Som and my deepest prayer has been "May their similarities end with their birth and surgery." I wish we all lived closer to Sarah so we could huddle around her through these scary days.
Sarah is connecting with Le Petit about the meal service that some of you have been talking about. She is thinking about it, since the hospital is 30 kilometers from where they live, and given they are always running, she has no idea where to get it delivered.
I had asked her when I mentioned the meal delivery service if there might be anything else we can help with. She had mentioned that they are researching like crazy about the best place for Tikva with regards to her care, so I had asked if she needs help with that, maybe, to ease some of it? Here's what Sarah says she needs. For those of you who are doctors and/or have a background in bio fields, or may have friends or family who are experts, or know someone through someone, "if anyone knows of someone ANYWHERE who can shed light on CMV infection in pre-term infant, we would be so interested to look at their research and/or contact them."
Sarah says that they are pretty disappointed with NHS, and would even travel to any other country as soon as they can (they are getting Tikva's citizenship registered, and her passport ready, and England is not their long-term home anyways), in order to get Tikva better care. She writes: "Here, no one can tell us anything about how this infection will affect her long-term, if she might have devastating brain damage later on, even if she appears ok now." We can only imagine what not knowing more and only having to silently watch can do to parents, and I was hoping someone among us will know something, or can find out?
Can we pull together our resources and our social networks to get Sarah information (both research as well as practices in hospitals all over the world, wherever we are) on long-term complications of and care for CMV in a pre-term infant? If you post here, I will compile all information and send it to her in an email. Or if she prefers, she can always come and check on Glow.
I know she would be grateful, and I am, too. Please let me know if you have any questions, and thanks guys!
Love to everyone and our babies,
Mrittika