New Update on Phoenix
UPDATE on Phoenix Sebastian (still at Doernbecher's Children's Hospital in Portland).
Not only did his Mormor and Morfar (grandma and grandpa, Peppe and Dave) and Aunt Anna Maria and her fiance Dimitri stop in Portland on their way back to Seattle to help get Phoenix situated at Doernbecher's, while his moms (Lisa and Steph) tried to catch up with him (driving to Portland, while Phoenix flew)... but, the next day, his Uncle Per stopped by to see and hold his new (first) nephew.
The scare of bowel surgery quickly subsided and after many fretful hours in a strange and different setting, we were pleased to learn that Phoenix would first be treated medically (with antibiotics and anti-inflamatories, as opposed to surgery) for his NEC (necrotizing enterocolitis).
Then, we had a new scare... a "whopping heart murmur" was found during an exam. This was found to be PDA (Patent ductus artriosus). This may have caused or exacerbated his NEC. We are currently attempting to treat this condition with medication (liquid ibuprofin!) before surgery will be considered.
He has had many xrays and echocardiograms, not to mention daily blood tests. Poor little guy has been through a lot in his short life, already.
He has had his gavage (feeding tube) replaced with a stomach suction tube (that was just removed today). He has had multiple IV's in his hands and feet replaced with a picc line (peripherally inserted central catheter,
from his leg to his chest). And, just today had it pulled 2.5 cm to relocate it. He also had his velcro stickers that held his "cool shades" for his phototherapy (for his jaundice) removed. He does still have his nasal cannula with a moderate amount of oxygen flowing. And, all of the wires / probes to monitor his respiratory rate, heart rate, and pulse.
He's quite the master at pulling tubes and wires from his body. And he is a regular Houdini at getting his hands / arms loose from any swaddling job that the nurses try to use to contain him.
Although in this setting we can not "kangaroo care" hold Phoenix as we did in the Bend NICU, we do get to hold him several times a day. We talk to him and read to him and try to comfort him the best that we can.
It is now a wait and see situation, to see if he will need surgery on his heart and / or his bowels. Our hope and prayer is neither. We will find out about his heart on Thursday (4/16) or Friday (4/17). And, we will find out about his bowels when they begin feeding again (after his fasting for a week, IV fluids / lipids / protiens, only) to see if his NEC has healed and if he can digest properly, on Friday (4/17) or Saturday (4/18). If all is well, he will get to go back to the Bend NICU for the remainder of his NICU needs.
Because the OHSU / Doernbecher NICU has just filled up with new, critical care preemies, Phoenix has actually been moved to where the "growers and feeders" are cared for, just this evening, due to his now, somewhat "stable" status. We are taking this as "good news".
Please keep Phoenix in your thoughts and prayers.
UPDATE on Phoenix Sebastian (still at Doernbecher's Children's Hospital in Portland).
Not only did his Mormor and Morfar (grandma and grandpa, Peppe and Dave) and Aunt Anna Maria and her fiance Dimitri stop in Portland on their way back to Seattle to help get Phoenix situated at Doernbecher's, while his moms (Lisa and Steph) tried to catch up with him (driving to Portland, while Phoenix flew)... but, the next day, his Uncle Per stopped by to see and hold his new (first) nephew.
The scare of bowel surgery quickly subsided and after many fretful hours in a strange and different setting, we were pleased to learn that Phoenix would first be treated medically (with antibiotics and anti-inflamatories, as opposed to surgery) for his NEC (necrotizing enterocolitis).
Then, we had a new scare... a "whopping heart murmur" was found during an exam. This was found to be PDA (Patent ductus artriosus). This may have caused or exacerbated his NEC. We are currently attempting to treat this condition with medication (liquid ibuprofin!) before surgery will be considered.
He has had many xrays and echocardiograms, not to mention daily blood tests. Poor little guy has been through a lot in his short life, already.
He has had his gavage (feeding tube) replaced with a stomach suction tube (that was just removed today). He has had multiple IV's in his hands and feet replaced with a picc line (peripherally inserted central catheter, from his leg to his chest). And, just today had it pulled 2.5 cm to relocate it. He also had his velcro stickers that held his "cool shades" for his phototherapy (for his jaundice) removed. He does still have his nasal cannula with a moderate amount of oxygen flowing. And, all of the wires / probes to monitor his respiratory rate, heart rate, and pulse.
He's quite the master at pulling tubes and wires from his body. And he is a regular Houdini at getting his hands / arms loose from any swaddling job that the nurses try to use to contain him.
Although in this setting we can not "kangaroo care" hold Phoenix as we did in the Bend NICU, we do get to hold him several times a day. We talk to him and read to him and try to comfort him the best that we can.
It is now a wait and see situation, to see if he will need surgery on his heart and / or his bowels. Our hope and prayer is neither. We will find out about his heart on Thursday (4/16) or Friday (4/17). And, we will find out about his bowels when they begin feeding again (after his fasting for a week, IV fluids / lipids / protiens, only) to see if his NEC has healed and if he can digest properly, on Friday (4/17) or Saturday (4/18). If all is well, he will get to go back to the Bend NICU for the remainder of his NICU needs.
Because the OHSU / Doernbecher NICU has just filled up with new, critical care preemies, Phoenix has actually been moved to where the "growers and feeders" are cared for, just this evening, due to his now, somewhat "stable" status. We are taking this as "good news".
Please keep Phoenix in your thoughts and prayers.
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