Hope for Baby Al Qasim in Seattle
Donation protected
This is our 5 month old, sweet little baby boy, Al Qasim Shaheed. He is our tiny warrior, he is our hero.
As I write this, my husband is driving back home, after rushing Al Qasim to St. Lukes Hospital, because his weekly lab work showed his sodium levels are dangerously low. Our little man will be in the hospital inevitably this time, and we desperately need help if he is to survive. This is our story. This is our life.
We are a family of 7, my husband Abbas, our awesome kids; Jazmine-13, Dane-12, Jade-7, Amirus-2, Al Qasim, and I'm Julie. Before I became pregnant with Al Qasim, we had a pretty normal life. My husband and I both worked full time to provide for our large family. We bought a home, in the country with acreage, and had so many plans and dreams for our furture. We spent our free time in the outdoors as much as possible, fishing, camping, swimming, hunting for Morel mushrooms. We strive to be good, decent people, helping others whenever we can, and striving to do as much good in this world as possible. We don't drink or do drugs, and are doing our very best to raise our children to be the best people that they can be. My husband and I had decided we wanted to have one more baby:)
When I was 20 weeks pregnant, we found out Al Qasim had a rare birth defect, called Gastroschisis, which means his intestines were outside of his stomach. Our doctors told us it wasn't too big a deal, that I would be induced a month early, and they would do surgery to put his intestines back inside. They said Al Qasim may have minor issues throughout life regarding digestion, that he would have to stay away from certain foods, but would otherwise have a normal life. I was set up to have ultrasounds every 2 weeks, to watch his growth.
At our 25 week ultrasound, I noticed that there appeared to be less bowel on the outside of his little tummy. I asked the Doctor what this might mean, but he was illusive and seemed unsure. At our 32 week ultrasound, it looked like there was no longer any bowel at all on the outside. Once again, the Doctor did not want to tell me why, or what could be happening. I knew deep in my heart that something was very, very wrong.
On September 9th, at 8:00am, at 36 weeks gestation, I was induced. Our sweet, beautiful baby boy, Al Qasim Shaheed Abdullah came into this world at 4:32pm:) It was immediately aparent that something was not at all right, my husband and I were allowed to kiss him before he was immidiately taken to surgery. 6 hours later, we finally learned that he had lost most of his intestine and appendix to necrosis. The blood supply had been cut off and it had slowly died and withered away. Al Qasim was left with just 32 centimeters of small intestine. He was diagnosed as Short Bowel Syndrome.
Our little warrior would have to overcome many obstacles to survive. He had to have a Central Line placed, in a major vessel just above his heart, so he could recieve IV Nutrition and Lipids. He had an Ostomy placed where his belly button would have been, so we could closely monitor his output. He was allowed to eat tiny amounts of breastmilk, which also needed close monitoring. He spent over a month in the NICU, and we had to train to learn how to care for his special needs before we could bring him home. I would not be able to go back to work, I had to stay home full time to care for our tiny guy.
Things went well for a while, we were able to slowly increase his feeds, and his tiny piece of intestine seemed to be tollerating and adjusting. Then his Stoma prolapsed, we had to rush back to the hospital for another surgery. Al Qasim's surgeon re-attached the intestine to his colon, and placed a G-Tube. A very long 4 weeks after that, we finally got to bring our baby boy home again! Even with all he had already gone through in his short life, he was the happiest, most talkative little dude, and absolutely adored by us all!
My wonderful husband had to quit his job and find part time work, so he could be home more to help me with the baby. Al Qasim was aproved for 30 hours/week for paid in home nurse care, but we live an hour and a half outside of Boise, and it has proven nearly immpossible to find an RN willing to drive this far. It has been very difficult and stressful trying to take care of Al Qasim, as well as our other kids.
For a couple weeks, it seemed as if our baby boy was doing better. Other than early stage liver disease, from the Lipids, his labs remained stable for the most part, and his intestine seemed to be starting to work a little. He had not been able to eat anything by mouth at all since surgery, all of his nutrition came from the TPN.
Then, very suddenly, things started going downhill. Al Qasim began vomiting constantly, even though we were venting intestinal secretions out of his G-Tube every 2 hours. He was no longer our happy, sweet little warrior. He began to withdraw, he stopped smiling, he stopped cooing, he stopped trying to roll over and play. He no longer wanted to interact with us, or even hold eye contact. He would just lay very still, staring off into space, with his tiny fists clenched so tight. He cried constantly, and his cry changed to a high pitched scream. It seemed as if he was always in some degree of pain. It was absolutely heartwrenching.
Our surgical team decided it was necesarry to do another surgery, called a Step Procedure, to try to lengthen his intestine and hopefully make it work better. They scheduled it for the 3rd of Feburary, and we could hardly wait.
Last week, I got a part time job that I can do mostly from home! I can't even explain how exciting this was for us:) I only have to leave home on Friday's for weekly meetings. Yesterday was my first Friday meeting, in Boise. While I was there, my husband called and said that he needed to rush Al Qasim to the hospital, because his lab work came back showing dangerously low sodium levels. I had to cut my meeting short and rush home to be with our other children. And here we are.
Al Qasim's surgical team are now telling us that our best chance would be to send Al Qasim to Seattle Children's Hospital for surgery. They no longer feel that they can help him here. The severity of his condition is very rare, and he has gone down hill so quickly, it is going to take specialty surgeons who are very experienced with intestinal rehab in babies for him to have a chance.
Of course we are going to do whatever we have to do to try to save our precious baby boy. He will most likely be transfered via life flight to Seattle within the next week, two weeks at the most. This means that my husband and I will be taking turns flying back and forth, for who knows how long, to be with Al Qasim as often as possible.
This is where you come in. We will desperately be needing help with travel and hotel expenses. We will also be needing help with bills and expenses here at home, as we will not be able to work as much as we need to in order to support ourselves and our family.
Please, every little bit helps, if you can't donate, it would help immensely if you share this as much as possible. Please, make it go viral. Our baby boy deserves a fighting chance to live. He is the sweetest little guy, he has the most amazing little personality and we really want to know him and watch him grow. Any help we receive would be so greatly appreciated. Please also include our little man in your prayers.
Thank you so very much for reading this, I know it is a lot. I just want everyone to know our situation, and to know that we would never ask for help if we didn't need it desperately.
Thank you,
Julie Abdullah and Family
As I write this, my husband is driving back home, after rushing Al Qasim to St. Lukes Hospital, because his weekly lab work showed his sodium levels are dangerously low. Our little man will be in the hospital inevitably this time, and we desperately need help if he is to survive. This is our story. This is our life.
We are a family of 7, my husband Abbas, our awesome kids; Jazmine-13, Dane-12, Jade-7, Amirus-2, Al Qasim, and I'm Julie. Before I became pregnant with Al Qasim, we had a pretty normal life. My husband and I both worked full time to provide for our large family. We bought a home, in the country with acreage, and had so many plans and dreams for our furture. We spent our free time in the outdoors as much as possible, fishing, camping, swimming, hunting for Morel mushrooms. We strive to be good, decent people, helping others whenever we can, and striving to do as much good in this world as possible. We don't drink or do drugs, and are doing our very best to raise our children to be the best people that they can be. My husband and I had decided we wanted to have one more baby:)
When I was 20 weeks pregnant, we found out Al Qasim had a rare birth defect, called Gastroschisis, which means his intestines were outside of his stomach. Our doctors told us it wasn't too big a deal, that I would be induced a month early, and they would do surgery to put his intestines back inside. They said Al Qasim may have minor issues throughout life regarding digestion, that he would have to stay away from certain foods, but would otherwise have a normal life. I was set up to have ultrasounds every 2 weeks, to watch his growth.
At our 25 week ultrasound, I noticed that there appeared to be less bowel on the outside of his little tummy. I asked the Doctor what this might mean, but he was illusive and seemed unsure. At our 32 week ultrasound, it looked like there was no longer any bowel at all on the outside. Once again, the Doctor did not want to tell me why, or what could be happening. I knew deep in my heart that something was very, very wrong.
On September 9th, at 8:00am, at 36 weeks gestation, I was induced. Our sweet, beautiful baby boy, Al Qasim Shaheed Abdullah came into this world at 4:32pm:) It was immediately aparent that something was not at all right, my husband and I were allowed to kiss him before he was immidiately taken to surgery. 6 hours later, we finally learned that he had lost most of his intestine and appendix to necrosis. The blood supply had been cut off and it had slowly died and withered away. Al Qasim was left with just 32 centimeters of small intestine. He was diagnosed as Short Bowel Syndrome.
Our little warrior would have to overcome many obstacles to survive. He had to have a Central Line placed, in a major vessel just above his heart, so he could recieve IV Nutrition and Lipids. He had an Ostomy placed where his belly button would have been, so we could closely monitor his output. He was allowed to eat tiny amounts of breastmilk, which also needed close monitoring. He spent over a month in the NICU, and we had to train to learn how to care for his special needs before we could bring him home. I would not be able to go back to work, I had to stay home full time to care for our tiny guy.
Things went well for a while, we were able to slowly increase his feeds, and his tiny piece of intestine seemed to be tollerating and adjusting. Then his Stoma prolapsed, we had to rush back to the hospital for another surgery. Al Qasim's surgeon re-attached the intestine to his colon, and placed a G-Tube. A very long 4 weeks after that, we finally got to bring our baby boy home again! Even with all he had already gone through in his short life, he was the happiest, most talkative little dude, and absolutely adored by us all!
My wonderful husband had to quit his job and find part time work, so he could be home more to help me with the baby. Al Qasim was aproved for 30 hours/week for paid in home nurse care, but we live an hour and a half outside of Boise, and it has proven nearly immpossible to find an RN willing to drive this far. It has been very difficult and stressful trying to take care of Al Qasim, as well as our other kids.
For a couple weeks, it seemed as if our baby boy was doing better. Other than early stage liver disease, from the Lipids, his labs remained stable for the most part, and his intestine seemed to be starting to work a little. He had not been able to eat anything by mouth at all since surgery, all of his nutrition came from the TPN.
Then, very suddenly, things started going downhill. Al Qasim began vomiting constantly, even though we were venting intestinal secretions out of his G-Tube every 2 hours. He was no longer our happy, sweet little warrior. He began to withdraw, he stopped smiling, he stopped cooing, he stopped trying to roll over and play. He no longer wanted to interact with us, or even hold eye contact. He would just lay very still, staring off into space, with his tiny fists clenched so tight. He cried constantly, and his cry changed to a high pitched scream. It seemed as if he was always in some degree of pain. It was absolutely heartwrenching.
Our surgical team decided it was necesarry to do another surgery, called a Step Procedure, to try to lengthen his intestine and hopefully make it work better. They scheduled it for the 3rd of Feburary, and we could hardly wait.
Last week, I got a part time job that I can do mostly from home! I can't even explain how exciting this was for us:) I only have to leave home on Friday's for weekly meetings. Yesterday was my first Friday meeting, in Boise. While I was there, my husband called and said that he needed to rush Al Qasim to the hospital, because his lab work came back showing dangerously low sodium levels. I had to cut my meeting short and rush home to be with our other children. And here we are.
Al Qasim's surgical team are now telling us that our best chance would be to send Al Qasim to Seattle Children's Hospital for surgery. They no longer feel that they can help him here. The severity of his condition is very rare, and he has gone down hill so quickly, it is going to take specialty surgeons who are very experienced with intestinal rehab in babies for him to have a chance.
Of course we are going to do whatever we have to do to try to save our precious baby boy. He will most likely be transfered via life flight to Seattle within the next week, two weeks at the most. This means that my husband and I will be taking turns flying back and forth, for who knows how long, to be with Al Qasim as often as possible.
This is where you come in. We will desperately be needing help with travel and hotel expenses. We will also be needing help with bills and expenses here at home, as we will not be able to work as much as we need to in order to support ourselves and our family.
Please, every little bit helps, if you can't donate, it would help immensely if you share this as much as possible. Please, make it go viral. Our baby boy deserves a fighting chance to live. He is the sweetest little guy, he has the most amazing little personality and we really want to know him and watch him grow. Any help we receive would be so greatly appreciated. Please also include our little man in your prayers.
Thank you so very much for reading this, I know it is a lot. I just want everyone to know our situation, and to know that we would never ask for help if we didn't need it desperately.
Thank you,
Julie Abdullah and Family
Organizer
Julie Abdullah
Organizer
Ola, ID
