Little Link
Donation protected
Howdy there friends and family! Let me introduce myself and my family to you. My name is Tanya. I am married to my amazing husband Patrick. We have a beautiful 4 year old girl together named Lily. We are expecting our little man Fall of 2015. His name is Lincoln. Inspiration for the name of this fundraiser came from our daughter, she talks to him everyday and calls him "Little Link." Link is a very speical little man. The day after our anatomy ultrasound, he was diagnosed with gastroschisis.
What is gastroschisis? Gastroschisis is a defect in the abdominal wall. During the growth of a baby in the womb, the abdominal wall somehow doesn't close together properly. That leaves a hole where organs can escape out through. Studies have not found what causes this condition..... It just happens.
Our little one currently has his small intestine on the outside of his body. He also has a "complicated case" which effects 10% of babies with gastroschisis. Part of the intestine that is on the inside of his abdomen is dialated and the hole that the intestine is coming out of is constricted. Currently the amniotic fluid that is surrounding our little one is on the low side (common with babies with gastroschisis).
Helplessness: deprived of strength or power; powerless; incapitated - dictionary.reference.org
My husband and I has never truly understood the meaning of helplessness until the day we found out about Link's diagnoses. We have absolutely no control over this situation. We can't make our sons' intestines go back inside his body... but we have choosen an hospital who can.
Thankfully, we have an amazing children's hospital 1.5hrs away from our home. We will be under the care at Childrens Hospital of Philadelphia when the time comes.
When I have reached 32 weeks of pregnancy (September 11,2015... hah go figure) my daughter and I will move to New Jersey with my grandparents to be in close proximity of CHOP while my husband stays home and works. I will go for fetal monitoring twice a week until the beautiful 37 weeks of pregnancy comes around. Then the fun begins. I will be admitted into the hospital and the lovely induction phase will begin. (mind you I was induced with my daughter... not a fun experience). I am still able to deliver vaginally (amazing, right?!) but once Lincoln is delivered he will be taken away to the NICU. From there, they will place a silo bag over the outside intestine to prevent temperature drop and infection. The silo bag will be suspended above him. This will help move the intestine back into the abdomen using gravity and a little ease.
Mind you during this time, we will not be able to hold or cuddle our baby, only touch. He will be receiving a "gatorade like solution" via IV to keep him hydrated. Once the small intestine is inside the abdomen (usually takes about 1-2 weeks) his abdomen will be closed together surgically. Then the wait begins. The surgeon at CHOP said that the abdominal repair is easy, the wait afterwards is difficult. Sometimes the intestine can be bad/dead/necrotic/twisted" If this happens then he will have to go back into surgery for another repair. But let's not think about that right now.....
He will slowly be introduced to breast milk via NG tube, a dropper, then hopefully by breast. Once he has no signs or symptoms of GI complications and is stable we will be able to bring our baby home. This can take anywhere between a few weeks to a few months. Every story is different.
My husband and I are asking for MAJOR prayers. Some days feel so bleak. It is so hard not to let this absolutely consume our every day thoughts. We are both "planners" and with a condition like this, we can't plan. We are also concerned about our daughter being introduced to this. How are we going to tell her about Link and his missing.... link? How is she going to react when she sees him for the first time in the NICU? How do we tell her that we are moving to NJ but daddy has to stay home? So many questions, so little time.
We are also asking for any financial support. No penny is too little. When we were debating whether or not to set up a GoFundMe account it hit us as to how prideful we both really are. We are so proud of where we are at and what we have gotten through to get to this point in our lives. Asking for help is not our idea of fun, it's quite uncomfortable.
But with the days flying by the more stressed and concerned we become. In April 2015 I switched full time jobs as an LPN. I absolutely adore my job, my coworkers and doctors I work with. But due to that switch, I will not receive any paid time off besides the small amount of PTO I have accumulated. Once my PTO hours run out (within the first 3 days I am in NJ) I am officially unpaid. My husband has to stay home and work because sadly, life goes on. Rent, electric, water, car insurance, etc. has to be paid. Also, once I have gone through my PTO hours I will have to pay out of pocket for Lilys, Link, and my insurance (approx. 250/month)..... joy... With only 1 income and a little bit of savings, we are wondering how this is going to work out. And of course, we have major medical bills heading our way from Link's surgery/hospital stay.
Like I said before, every penny counts. I do not expect a lot and that is why I set the fundraiser goal to $1. I have no idea where this will lead. Maybe it will serve as a stress reliever for myself. Or maybe this will help someone in the future who goes through this same situation. Btw, whoever that is, I am praying for you immensley. But no matter what happens with this fundraiser, I am most thankful for anyone who reads this and prays for us through this difficult journey.
"We have this hope as an anchor for the soul, firm and secure." - hebrews6:19
P.S. prayers that our cars don't fall apart during this time would be super awesome too! ;)
What is gastroschisis? Gastroschisis is a defect in the abdominal wall. During the growth of a baby in the womb, the abdominal wall somehow doesn't close together properly. That leaves a hole where organs can escape out through. Studies have not found what causes this condition..... It just happens.
Our little one currently has his small intestine on the outside of his body. He also has a "complicated case" which effects 10% of babies with gastroschisis. Part of the intestine that is on the inside of his abdomen is dialated and the hole that the intestine is coming out of is constricted. Currently the amniotic fluid that is surrounding our little one is on the low side (common with babies with gastroschisis).
Helplessness: deprived of strength or power; powerless; incapitated - dictionary.reference.org
My husband and I has never truly understood the meaning of helplessness until the day we found out about Link's diagnoses. We have absolutely no control over this situation. We can't make our sons' intestines go back inside his body... but we have choosen an hospital who can.
Thankfully, we have an amazing children's hospital 1.5hrs away from our home. We will be under the care at Childrens Hospital of Philadelphia when the time comes.
When I have reached 32 weeks of pregnancy (September 11,2015... hah go figure) my daughter and I will move to New Jersey with my grandparents to be in close proximity of CHOP while my husband stays home and works. I will go for fetal monitoring twice a week until the beautiful 37 weeks of pregnancy comes around. Then the fun begins. I will be admitted into the hospital and the lovely induction phase will begin. (mind you I was induced with my daughter... not a fun experience). I am still able to deliver vaginally (amazing, right?!) but once Lincoln is delivered he will be taken away to the NICU. From there, they will place a silo bag over the outside intestine to prevent temperature drop and infection. The silo bag will be suspended above him. This will help move the intestine back into the abdomen using gravity and a little ease.
Mind you during this time, we will not be able to hold or cuddle our baby, only touch. He will be receiving a "gatorade like solution" via IV to keep him hydrated. Once the small intestine is inside the abdomen (usually takes about 1-2 weeks) his abdomen will be closed together surgically. Then the wait begins. The surgeon at CHOP said that the abdominal repair is easy, the wait afterwards is difficult. Sometimes the intestine can be bad/dead/necrotic/twisted" If this happens then he will have to go back into surgery for another repair. But let's not think about that right now.....
He will slowly be introduced to breast milk via NG tube, a dropper, then hopefully by breast. Once he has no signs or symptoms of GI complications and is stable we will be able to bring our baby home. This can take anywhere between a few weeks to a few months. Every story is different.
My husband and I are asking for MAJOR prayers. Some days feel so bleak. It is so hard not to let this absolutely consume our every day thoughts. We are both "planners" and with a condition like this, we can't plan. We are also concerned about our daughter being introduced to this. How are we going to tell her about Link and his missing.... link? How is she going to react when she sees him for the first time in the NICU? How do we tell her that we are moving to NJ but daddy has to stay home? So many questions, so little time.
We are also asking for any financial support. No penny is too little. When we were debating whether or not to set up a GoFundMe account it hit us as to how prideful we both really are. We are so proud of where we are at and what we have gotten through to get to this point in our lives. Asking for help is not our idea of fun, it's quite uncomfortable.
But with the days flying by the more stressed and concerned we become. In April 2015 I switched full time jobs as an LPN. I absolutely adore my job, my coworkers and doctors I work with. But due to that switch, I will not receive any paid time off besides the small amount of PTO I have accumulated. Once my PTO hours run out (within the first 3 days I am in NJ) I am officially unpaid. My husband has to stay home and work because sadly, life goes on. Rent, electric, water, car insurance, etc. has to be paid. Also, once I have gone through my PTO hours I will have to pay out of pocket for Lilys, Link, and my insurance (approx. 250/month)..... joy... With only 1 income and a little bit of savings, we are wondering how this is going to work out. And of course, we have major medical bills heading our way from Link's surgery/hospital stay.
Like I said before, every penny counts. I do not expect a lot and that is why I set the fundraiser goal to $1. I have no idea where this will lead. Maybe it will serve as a stress reliever for myself. Or maybe this will help someone in the future who goes through this same situation. Btw, whoever that is, I am praying for you immensley. But no matter what happens with this fundraiser, I am most thankful for anyone who reads this and prays for us through this difficult journey.
"We have this hope as an anchor for the soul, firm and secure." - hebrews6:19
P.S. prayers that our cars don't fall apart during this time would be super awesome too! ;)
Organizer
Tanya Jenkins
Organizer
Ephrata, PA