Tristan, our 22 week "Miracle Baby"
Donation protected
Hello world, meet Tristan Josiah. He was born on December 30, 2015 at a mere 22 weeks gestation; weighing in at 1 lb 4 oz while being 22cm in length. The story that preceded his birth in the emergency room at 2:29 am is one that is difficult to tell.
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The morning of December 29th I went into what I now know was labor. A little after midnight I went to the emergency room; my water broke in the waiting room and soon after Tristan arrived.
He came out crying and breathing on his own. No one was prepared for a baby to arrive so I just held him as close to me as I could in an attempt to keep him warm. It took the staff a full 10 min to get a bed ready for him and take him from me. Meanwhile our little miracle baby held his own for that entire 10 min.
The night was rough to say the least! The doctors told us that they were going to do everything they could, but that 22 weeks was just way too early to be optimistic. Physicians only really began to treat 24 week old babies starting just a few years ago. But Tristan made it through the night, and that is when we knew everything was going to be ok.
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Every single day is touch and go, being only 22 weeks, major organs are not fully developed. His eyes were also still fused shut because they do not usually begin to open until 26 weeks. He did not have fingernails, and his lungs or heart were no where near prepared to survive outside of the womb. Infants also do not produce their own blood at this stage, so he has had dozens of blood transfusions.
It has been 122 days since Tristan has arrived and I can't seem to remember what my life was like without him. He has spent the entirety of his life in a hospital or ambulance, and the majority of that time in a Giraffe Omni Bed (incubator). He has had 5 separate ambulance rides. On day 12 he took his third trip to Children's Healthcare of Atlanta at Egleston for his first real surgery to repair what we know now was a perforation in his intestine.
The first two trips to Egleston were for PICC line placements because the level 3 NICU we were at did not have equipment small enough to give him an IV. Finally on the third trip, Egleston decided to keep him, and we have been there ever since! Yes it is over an hour away from home and the other hospital was "more convenient", but I am confident in the quality of care he is receiving here.
Timeline Since Birth:
- Day 5: abulance ride to Children's for a central line; they did not succeed and he got a PICC line instead. Sent him back to the other hospital on the SAME DAY
- Day 7: the Doctor gave him 48 hours to live.
- Day 8: ambulance ride back to Children's for another PICC line
- Day 9: ambulance ride back to other hospital
- Day 10: He proved the day 7 doctor wrong...
- Day 12: ambulance ride to Children's; intestinal drain inserted and Central line
- Day 22: I got to hold my son for the first time!
- Day 23: he went back under for an exploratory intestine surgery
- Day 31: heart surgery, PDA lidigation
- Day 76: surgery to put his intestine back together; and then laser surgery on his eyes as well
These are just the major milestones Tristan has acheived, but every single day has had it's ups and downs. We have taken a step forward, only to fall two steps back. The emotional rollercoaster has been intense, but I think we are coming to an end.
Tristan could come home anyday now and with the potential health obsticals we are facing there is no way we could leave him with a regular nanny and trust that they would be qualified to meet all of his needs. I just want him to be home safe and sound and comfortable.
He is currently still on some ventalator support and on a feeding tube, but he has come a long long way! The doctors say it is possible that if he seems stable in all other aspects other than light oxygen support, he could come home anyway, requiring a ventalator system in our home as well.
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I realize that I have not introduced myself, only because this story is about Tristan, not me. I am Tristan's mother, a 25-year-old mother of 2. I am a senior at Georgia State and will be graduating with a bachelor in Sociology this semester! Before Tristan came into our lives I worked every day that I was not in school. But since he was born I spend all of my free time in the hospital with him and hooked to a breast pump!
Insurance will be covering a good portion of the expenses at each hospital (at least that is what I have been told), but there has been no say about the at home medical equipment. Apparently those things, like an extra oxygen tank or a heart monitor, are considered "luxury"... and we can't afford nor does insurance cover luxury. Insurance also doesn't cover the unexpectedness of this birth, so all expenses acrued by us in the emergency room are also not covered.
We have also been working very hard to prepare our house for the arrival of not just a baby, but a fragile baby. We are striving to make our home meet the technical and safety standards Tristan will require.
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I realize that this fundraiser could have been more effective if started right after Tristan was born, but I thought we could do it on our own. I was wrong. I have swallowed my pride and will ask for help from those who understand that we need it. Things have been so hard and I have tried to stay strong, but it is all catching up to us faster than we can run. Every single day is a mental struggle.
I feel like I am just rambling on giving unneccesary information, but in the same breath I think that if we are going to ask people for help the least I could do is provide full disclosure for the intent of the said funds. Also to express the gratitude we have for all of the loving support of our friends and family.
I know that we are blessed to have a son that has proved to us time and time again that he is a fighter and he is here to stay. I am hoping that we get a chance to celebrate his life and enjoy every little breath he takes when it is time for him to come home, and anything that you can donate would allow us just that much more clear conscious. Thank you to everyone who continues to keep us it their thoughts and prayers!
And if you know someone who is a NICU parent and they are having a hard time, or if that person is you, please do not hesitate to contact me. There is hope for our little ones and they just need us to be the best parent we can be!
-----------------------------------------------------------------------
The morning of December 29th I went into what I now know was labor. A little after midnight I went to the emergency room; my water broke in the waiting room and soon after Tristan arrived.
He came out crying and breathing on his own. No one was prepared for a baby to arrive so I just held him as close to me as I could in an attempt to keep him warm. It took the staff a full 10 min to get a bed ready for him and take him from me. Meanwhile our little miracle baby held his own for that entire 10 min.
The night was rough to say the least! The doctors told us that they were going to do everything they could, but that 22 weeks was just way too early to be optimistic. Physicians only really began to treat 24 week old babies starting just a few years ago. But Tristan made it through the night, and that is when we knew everything was going to be ok.
-----------------------------------------------------------------------
Every single day is touch and go, being only 22 weeks, major organs are not fully developed. His eyes were also still fused shut because they do not usually begin to open until 26 weeks. He did not have fingernails, and his lungs or heart were no where near prepared to survive outside of the womb. Infants also do not produce their own blood at this stage, so he has had dozens of blood transfusions.
It has been 122 days since Tristan has arrived and I can't seem to remember what my life was like without him. He has spent the entirety of his life in a hospital or ambulance, and the majority of that time in a Giraffe Omni Bed (incubator). He has had 5 separate ambulance rides. On day 12 he took his third trip to Children's Healthcare of Atlanta at Egleston for his first real surgery to repair what we know now was a perforation in his intestine.
The first two trips to Egleston were for PICC line placements because the level 3 NICU we were at did not have equipment small enough to give him an IV. Finally on the third trip, Egleston decided to keep him, and we have been there ever since! Yes it is over an hour away from home and the other hospital was "more convenient", but I am confident in the quality of care he is receiving here.
Timeline Since Birth:
- Day 5: abulance ride to Children's for a central line; they did not succeed and he got a PICC line instead. Sent him back to the other hospital on the SAME DAY
- Day 7: the Doctor gave him 48 hours to live.
- Day 8: ambulance ride back to Children's for another PICC line
- Day 9: ambulance ride back to other hospital
- Day 10: He proved the day 7 doctor wrong...
- Day 12: ambulance ride to Children's; intestinal drain inserted and Central line
- Day 22: I got to hold my son for the first time!
- Day 23: he went back under for an exploratory intestine surgery
- Day 31: heart surgery, PDA lidigation
- Day 76: surgery to put his intestine back together; and then laser surgery on his eyes as well
These are just the major milestones Tristan has acheived, but every single day has had it's ups and downs. We have taken a step forward, only to fall two steps back. The emotional rollercoaster has been intense, but I think we are coming to an end.
Tristan could come home anyday now and with the potential health obsticals we are facing there is no way we could leave him with a regular nanny and trust that they would be qualified to meet all of his needs. I just want him to be home safe and sound and comfortable.
He is currently still on some ventalator support and on a feeding tube, but he has come a long long way! The doctors say it is possible that if he seems stable in all other aspects other than light oxygen support, he could come home anyway, requiring a ventalator system in our home as well.
-----------------------------------------------------------------------
I realize that I have not introduced myself, only because this story is about Tristan, not me. I am Tristan's mother, a 25-year-old mother of 2. I am a senior at Georgia State and will be graduating with a bachelor in Sociology this semester! Before Tristan came into our lives I worked every day that I was not in school. But since he was born I spend all of my free time in the hospital with him and hooked to a breast pump!
Insurance will be covering a good portion of the expenses at each hospital (at least that is what I have been told), but there has been no say about the at home medical equipment. Apparently those things, like an extra oxygen tank or a heart monitor, are considered "luxury"... and we can't afford nor does insurance cover luxury. Insurance also doesn't cover the unexpectedness of this birth, so all expenses acrued by us in the emergency room are also not covered.
We have also been working very hard to prepare our house for the arrival of not just a baby, but a fragile baby. We are striving to make our home meet the technical and safety standards Tristan will require.
-----------------------------------------------------------------------
I realize that this fundraiser could have been more effective if started right after Tristan was born, but I thought we could do it on our own. I was wrong. I have swallowed my pride and will ask for help from those who understand that we need it. Things have been so hard and I have tried to stay strong, but it is all catching up to us faster than we can run. Every single day is a mental struggle.
I feel like I am just rambling on giving unneccesary information, but in the same breath I think that if we are going to ask people for help the least I could do is provide full disclosure for the intent of the said funds. Also to express the gratitude we have for all of the loving support of our friends and family.
I know that we are blessed to have a son that has proved to us time and time again that he is a fighter and he is here to stay. I am hoping that we get a chance to celebrate his life and enjoy every little breath he takes when it is time for him to come home, and anything that you can donate would allow us just that much more clear conscious. Thank you to everyone who continues to keep us it their thoughts and prayers!
And if you know someone who is a NICU parent and they are having a hard time, or if that person is you, please do not hesitate to contact me. There is hope for our little ones and they just need us to be the best parent we can be!
Organizer
Lauren Belyeu Tirado
Organizer
Palmetto, GA