Paisley's Trip to Boston
Donation protected
Hello everyone!
Nicole and Jason, have decided to do whats absolutely best for Paisley and in two weeks they will be making the move to Boston. Paisley has hit a plateau in her development and therefore needs more intensive therapies to make sure she achieves her full potential. These therapies are offered in Boston. She will also be able to be closely monitored by her neurologist and her neurosurgeon since she will be in the same city.
As I'm sure you can imagine, the cost of moving 600+ miles away on short notice is a huge financial burden for them. They are currently putting their house in Pittsburgh on the market and will be having to rent a apartment in Boston.
If you could please help contribute to their moving costs in anyway, it would be greatly appreciated.
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We (Eileen and John Schmidt.. Paisley's grandparents) have started this page to help fund Paisley's trip to Childrens Hospital of Boston. There she will be seen and treated by Dr. Orbach (the TOP doctor and specialist on Vein of Galen Malformation). Being treated at Boston will give Paisley the best possible chance she can have.
Paisley is now 7.5 months old and due to a recent CT scan showing an excessive amount of fluid building up in her brain, she is going to need to undergo her third brain embolization procedure.
This was taken from my daughters Facebook page, this is Paisley's story:
"So now that some time has gone by and we are finally home, I figured it's time to share just exactly what Paisley has gone through. I haven't really posted specifics on why she was in the hospital, etc.
On her 2nd day of life at Mercy, she was taken to have her routine CCHD screening (every baby gets this before they are discharged). After an hour had gone by and she still wasn't back in the room, I just knew something was wrong. Well I was right...she failed the screening and they found that she had a heart murmur and wasn't doing too great. They decided it was best that she was transferred to the Childrens Hospital of Pittsburgh NICU. As you can imagine, I was in a panic... my 100% healthy baby (or so we thought), was suddenly being rushed to the NICU. We were just hours from being discharged and on the way home with our new baby.
Once at the NICU, they ran a bunch of tests on her. Long story short we were told that early morning, that Paisley had a Vein of Galen malformation in her brain, and due to that was now in high output cardiac failure. I’ll post the link to the Vein of Galen page because it’s complicated to explain but basically it’s a malformation of a vein in the brain. It develops in utero but usually goes undetected till the baby is born and starts showing signs of distress. It’s also very rare, 1 in 1 million babies are born with it. (http://vogmparents.org/join-the-alliance/). They also decided to intubate Paisley at this point because they feared she was going to stop breathing on her own. At this point, they did not think Paisley was going to make it.
Due to the critical state Paisley was in, we made the hard decision to have Paisley undergo a very risk Embolization procedure (they gave us 50/50 odds). Where they went in through a catheter that was placed in her groin, up to her brain and “glued” off some of the veins that were feeding the Vein of Galen malformation. Paisley was a fighter and made it through the first procedure and we were just relieved to have our baby girl one more day. Later that day we talked to her Neurosurgeon who decided it was critical for Paisley to undergo another embolization procedure ASAP. The risks were a lot higher in this procedure, but it was necessary to try and save our baby girl. So once again, we watched as our 3 day old baby girl was transported off to her 2nd brain surgery.
One of the risks of the procedures was bleeding in the brain, and that was something that happened during the procedure. Due to this, they placed an EVD (basically a drain in Paisleys brain) to get rid of the excess fluid and blood. When the 2nd procedure was done, we were taken down to the OR to talk with the neurosurgeon who told us the procedure was successful and they were able to “Glue” off a few more of the main veins that were feeding the Vein of Galen. It was now time to “wait and see” if her condition improved.
Everything really is kind of a blur but over the next few days she remained stable, which to us, was a miracle in itself. She started having silent seizures due to the bleeding in her brain, and was started on IV seizure meds. After days and days of not being able to stop the seizures with countless medications…a doctor from the NICU and Paisley’s neurologist took us to a room, and sat us down to discuss her condition. Long story short, we were told we needed to make a decision about how we wanted Paisley to live. They told us based on her current condition they didn’t think Paisley would ever be able to breathe on her own, that she would never be able to regulate her own body temperature, would have to be fed through a tube her whole life, that her quality of life would not be what we originally thought it would be. Heartbroken doesn’t even begin to describe what we were feeling. I couldn’t cope and I couldn’t imagine being able to live my life without my baby girl in it.
I think Paisley must’ve heard the doctors that night, because over the next few days Paisley started to turn the corner. Her seizures started to decrease, her vital signs started to improve. She would open her eyes and look at us, move her arms and legs, react to her surroundings. The doctors decided to try and insert a feeding tube and for the first time in her life, feed her through it. Daily Paisley was improving, and proving the doctors wrong. She was able to be cold stressed (A test to decide whether she would be able to hold her own body temperature, something they said she wouldn’t be able to do) and she passed with flying colors! I was finally able to dress my little girl and take her off the warming bed. Her oxygen levels were also improving daily, and they were able to wean her off the ventilator. On September 10th, they removed the breathing tube and Paisley was able to breathe on her own for the first time in 21 days (another thing they said she would never be able to do).
After continuing to show improvements, we reluctantly left our little NICU family and were transferred to the Children’s Home so that Paisley could hopefully learn to eat from a bottle. On her 3rd day of being at the Children’s Home, Paisley went from never eating from a bottle to taking a bottle multiple times a day. After 7 weeks of being in the hospital, we were finally discharged to go home on October 6th.
Sorry that this is so long, but her story is not something that can be explained in a short paragraph (even this is the VERY condensed version). Paisley continues to amaze her doctors every day, she does things they said she would NEVER do. They didn’t expect her to even make it past that first night in the NICU. She has a long road ahead of her and possibly more surgeries, but she has shown us she is more than capable of doing that! She has now been seizure free for many weeks, her heart is almost 100% normal again, and she is back on track for weight gain and growth.
The following pictures were taken of Paisley in the first few days of her being in the NICU at Childrens and after her procedures. I post these so that you can see just how far this little girl has come."
The funds from this fundraiser will be used to help Nicole and Jason with all of Paisleys medical expenses, travel expenses, Etc.
Nicole and Jason, have decided to do whats absolutely best for Paisley and in two weeks they will be making the move to Boston. Paisley has hit a plateau in her development and therefore needs more intensive therapies to make sure she achieves her full potential. These therapies are offered in Boston. She will also be able to be closely monitored by her neurologist and her neurosurgeon since she will be in the same city.
As I'm sure you can imagine, the cost of moving 600+ miles away on short notice is a huge financial burden for them. They are currently putting their house in Pittsburgh on the market and will be having to rent a apartment in Boston.
If you could please help contribute to their moving costs in anyway, it would be greatly appreciated.
--------------------------
We (Eileen and John Schmidt.. Paisley's grandparents) have started this page to help fund Paisley's trip to Childrens Hospital of Boston. There she will be seen and treated by Dr. Orbach (the TOP doctor and specialist on Vein of Galen Malformation). Being treated at Boston will give Paisley the best possible chance she can have.
Paisley is now 7.5 months old and due to a recent CT scan showing an excessive amount of fluid building up in her brain, she is going to need to undergo her third brain embolization procedure.
This was taken from my daughters Facebook page, this is Paisley's story:
"So now that some time has gone by and we are finally home, I figured it's time to share just exactly what Paisley has gone through. I haven't really posted specifics on why she was in the hospital, etc.
On her 2nd day of life at Mercy, she was taken to have her routine CCHD screening (every baby gets this before they are discharged). After an hour had gone by and she still wasn't back in the room, I just knew something was wrong. Well I was right...she failed the screening and they found that she had a heart murmur and wasn't doing too great. They decided it was best that she was transferred to the Childrens Hospital of Pittsburgh NICU. As you can imagine, I was in a panic... my 100% healthy baby (or so we thought), was suddenly being rushed to the NICU. We were just hours from being discharged and on the way home with our new baby.
Once at the NICU, they ran a bunch of tests on her. Long story short we were told that early morning, that Paisley had a Vein of Galen malformation in her brain, and due to that was now in high output cardiac failure. I’ll post the link to the Vein of Galen page because it’s complicated to explain but basically it’s a malformation of a vein in the brain. It develops in utero but usually goes undetected till the baby is born and starts showing signs of distress. It’s also very rare, 1 in 1 million babies are born with it. (http://vogmparents.org/join-the-alliance/). They also decided to intubate Paisley at this point because they feared she was going to stop breathing on her own. At this point, they did not think Paisley was going to make it.
Due to the critical state Paisley was in, we made the hard decision to have Paisley undergo a very risk Embolization procedure (they gave us 50/50 odds). Where they went in through a catheter that was placed in her groin, up to her brain and “glued” off some of the veins that were feeding the Vein of Galen malformation. Paisley was a fighter and made it through the first procedure and we were just relieved to have our baby girl one more day. Later that day we talked to her Neurosurgeon who decided it was critical for Paisley to undergo another embolization procedure ASAP. The risks were a lot higher in this procedure, but it was necessary to try and save our baby girl. So once again, we watched as our 3 day old baby girl was transported off to her 2nd brain surgery.
One of the risks of the procedures was bleeding in the brain, and that was something that happened during the procedure. Due to this, they placed an EVD (basically a drain in Paisleys brain) to get rid of the excess fluid and blood. When the 2nd procedure was done, we were taken down to the OR to talk with the neurosurgeon who told us the procedure was successful and they were able to “Glue” off a few more of the main veins that were feeding the Vein of Galen. It was now time to “wait and see” if her condition improved.
Everything really is kind of a blur but over the next few days she remained stable, which to us, was a miracle in itself. She started having silent seizures due to the bleeding in her brain, and was started on IV seizure meds. After days and days of not being able to stop the seizures with countless medications…a doctor from the NICU and Paisley’s neurologist took us to a room, and sat us down to discuss her condition. Long story short, we were told we needed to make a decision about how we wanted Paisley to live. They told us based on her current condition they didn’t think Paisley would ever be able to breathe on her own, that she would never be able to regulate her own body temperature, would have to be fed through a tube her whole life, that her quality of life would not be what we originally thought it would be. Heartbroken doesn’t even begin to describe what we were feeling. I couldn’t cope and I couldn’t imagine being able to live my life without my baby girl in it.
I think Paisley must’ve heard the doctors that night, because over the next few days Paisley started to turn the corner. Her seizures started to decrease, her vital signs started to improve. She would open her eyes and look at us, move her arms and legs, react to her surroundings. The doctors decided to try and insert a feeding tube and for the first time in her life, feed her through it. Daily Paisley was improving, and proving the doctors wrong. She was able to be cold stressed (A test to decide whether she would be able to hold her own body temperature, something they said she wouldn’t be able to do) and she passed with flying colors! I was finally able to dress my little girl and take her off the warming bed. Her oxygen levels were also improving daily, and they were able to wean her off the ventilator. On September 10th, they removed the breathing tube and Paisley was able to breathe on her own for the first time in 21 days (another thing they said she would never be able to do).
After continuing to show improvements, we reluctantly left our little NICU family and were transferred to the Children’s Home so that Paisley could hopefully learn to eat from a bottle. On her 3rd day of being at the Children’s Home, Paisley went from never eating from a bottle to taking a bottle multiple times a day. After 7 weeks of being in the hospital, we were finally discharged to go home on October 6th.
Sorry that this is so long, but her story is not something that can be explained in a short paragraph (even this is the VERY condensed version). Paisley continues to amaze her doctors every day, she does things they said she would NEVER do. They didn’t expect her to even make it past that first night in the NICU. She has a long road ahead of her and possibly more surgeries, but she has shown us she is more than capable of doing that! She has now been seizure free for many weeks, her heart is almost 100% normal again, and she is back on track for weight gain and growth.
The following pictures were taken of Paisley in the first few days of her being in the NICU at Childrens and after her procedures. I post these so that you can see just how far this little girl has come."
The funds from this fundraiser will be used to help Nicole and Jason with all of Paisleys medical expenses, travel expenses, Etc.
Organizer and beneficiary
Nicole Lasica
Organizer
West Mifflin, PA
Nicole Schmidt
Beneficiary
