the past two weeks have been so f*cked up.
first, my sister had the routine pentascreen (genetic test during pregnancy) which came back with elevated AFP levels, which could be a fluke or could mean serious disorders like spina bifida in the baby. so she went for a follow-up ultrasound last friday, during which they saw that her baby--a boy--had a hole in his belly and his intestines were outside of his body. it's called gastroschisis. they told her if he survived to full-term, and if he survived birth itself, he would have a 90% survival rate though he would have to undergo surgeries and be in NICU and so on and so forth... i can only imagine what she and her husband went through, because i know when i found out i cried harder than when my grandmother died. it felt like i was learning that MY baby was going to be hurt, or might die. it was unbearable.
two days later, on sunday night, i got a call that she was in the ER because she was having contractions and had started premature labor. she was 23 weeks pregnant.
i rushed to the hospital and was there as they wheeled her into her room in shands' labor and delivery, where she told me she was dilated to 5cm* but thankfully her waters hadn't broken. they pumped her full of nifedipine to stop the contractions and they gave her steroid shots for the baby's lungs just in case he was delivered--at 23 weeks his lungs were not even close to being ready to take in air. she was confined to 100% bed rest with her feet inclined above her head to reduce pressure on her cervix, and stuck in the hospital with the understanding that she wouldn't be going home until she delivered, whether it be in 3 days or 3 months. we were all terrified and didn't know what to do, considering this baby was not only trying to be premature but also had complications that would put even a full-term baby at risk... all we could do was visit her and try to be encouraging, which we all did.
melissa made it 10 days drugged in misery, fear, pain (from ongoing contractions), and humiliation (bed pans and sponge baths) before Kai Lani was born on tuesday 10/27/09. he was 24.5 weeks gestational age, just over halfway "cooked." his birth was uneventful; melissa had a series of 3 contractions back-to-back suddenly, my mom called me, and he was born before i made the 6 minute trip to the hospital from my house. two pushes was all it took, as he was already nearly falling out of her by that point. he breathed on his own, he was vigorous, and they rushed him to NICU.
that was a bad night. after they took her baby away from her, they left melissa with us in her room to deal with the flood of birth hormones and the absence of her baby, which she was heartbroken over despite her best efforts to remain unattached out of self-preservation. we waited and waited for them to come in and tell us he was ok and that we could see him, but when they finally came in it was with the subtly-ominous words "we need you now" as they practically dragged melissa into the wheelchair... the RN actually allowed my mom and i to go in even though the rules say only 2 people per baby, which confirmed what i thought i had heard in her voice... we were about to lose him and it was time to say goodbye. i was completely distraught but trying SO hard to keep my shit together for melissa's sake but it was possibly the hardest thing i've ever done. i think she was numb. we went over to his little bed/machine and we learned he had been without a heartbeat for 10 minutes (though they were doing constant chest compressions on his tiny body)... watching them press on him and mess with tubes in his throat and thinking that he was dying pushed me over the edge and i started hyperventilating and completely broke down; thankfully the nurse saw me before i let it out and she rushed me out the door at which point i lost it, just sobbing uncontrollably in total despair and sorrow for melissa, for james, for that poor little baby and for the rest of us. i just couldn't watch them do what they were doing to his little fragile body, even though i knew they were trying to save him... i don't know where melissa got the strength to endure, but she amazed me that night. i am not nearly as strong as she is.
eventually melissa and james came back to the room sort of blankly staring, but they said he was ok. we were visited by a few other doctors who explained a lot about prematurity and gastroschisis and how it's not good that he had an "event" like that on his first night, so the outlook was uncertain. they said they would do a brain ultrasound after a few days to check for any serious hemorrhage that might indicate brain damage, as melissa and james had decided they didn't want to put him through a life that would be unfulfilling for him if he has serious mental disability. again, i don't know how they can be so strong. i think they are making the compassionate choice but i don't think i could do that myself... i wouldn't be able to willingly let go.
so far he's done well, he's been stable and they say he's "kicking and screaming" which is a good thing. they say there have not been any obvious signs of brain damage, so that's good but not a definite. he needs a blood transfusion so either james or me will be the ones to give it, depending on what melissa wants (james smokes/drinks so his blood isn't as "clean" as mine, as i take no meds, etc). he is so, so tiny though. it's painful to watch him be in the incubator...he should be cozy and safe inside melissa's womb for another few months. but it is absolutely amazing that the technology exists to keep him safe even outside the body. i'm not going to go into detail about all the things they have to do to him, the tubes in his body, etc, because it just makes me hurt inside, but i am grateful that they have done so much already. i just hope he continues to be ok and comes out as normal as possible... but i think everything happens for a reason, so whatever is is as it should be.
melissa and james are holding up ok. it's not easy, but they visit kai something like twice a day and melissa is pumping diligently to make sure he has breast milk when it is time for him to take it. they can't touch him yet. they'll do the head ultrasound tuesday or thursday, so until then there is a lot of anxiety because no one knows what will ultimately happen to the little guy. for my part, it is so, so hard to think that he might be severely impaired and they decide not to continue keeping him alive. i don't know how or why, but i love that baby so much and i just want him to grow up and be rowan's cousin...
as a side note, visiting the NICU (again yesterday) was a very difficult experience. i was happy to see kai, and while he is a pathetic little creature, what was even harder was hearing all the other tiny babies cry, their premature cries so soft and plaintive, just wanting to be comforted and held and kept safe. for the most part, no one was there to visit them, though there was at least one attendant for every baby... but the attendants don't hold them. i realize people have to work, but how can you leave your baby in a box and not be there when it cries? i was overwhelmed a few times, just desperate to give them love but not allowed to... being surrounded by so much helplessness and vulnerability crying out for attention was quite too much for me. for a moment i considered a career path that would let me care for them, but i realized it would kill me to have to do anything that might hurt them even for their best interests.
equally so, i mourn the loss of my sister's pregnancy... she did not get to experience enough of the joy of carrying a baby, of feeling his kicks get stronger over time, of having a glorious belly, of being so big and uncomfortable you can't get around easily, of slowly learning who her baby is, of desperately WANTING that baby and wanting not to be pregnant anymore. and of just being happy about the birth, of having a shower and planning the room, and daydreaming about what he will look like and when he'll be born. kai's birth was all fear and worry and reluctance, and melissa's experience was cut so short she didn't have a chance to appreciate being pregnant. it sucks.
i have learned something about myself through rowan's birth and now kai's, however. i still do believe that nature dictates that some babies and some mothers die during childbirth, and that that is the normal way of life; but i also realize that the bottom line is, when it's you, and the technology exists to save yourself or your baby, you can't refuse it. maybe it goes against nature, but it is OUR nature to do anything to save our own lives and the lives of our children. until there is no choice, there is no choice. i get it, and even if i philosophically disagree with them, my actions speak to my reality.
please send happy thoughts of love and healing to kai, to melissa, and to james. they need it.
*if you do not know much about pregnancy and childbirth here's a quick breakdown: the cervix should be tightly closed until labor starts, at which time contractions begin to slowly--sometimes, usually for first time moms, VERY slowly--open the cervix. the goal is 10cm, but a mom is considered in "active labor," which means screaming in pain and breathing like in the movies, at 4cm.
first, my sister had the routine pentascreen (genetic test during pregnancy) which came back with elevated AFP levels, which could be a fluke or could mean serious disorders like spina bifida in the baby. so she went for a follow-up ultrasound last friday, during which they saw that her baby--a boy--had a hole in his belly and his intestines were outside of his body. it's called gastroschisis. they told her if he survived to full-term, and if he survived birth itself, he would have a 90% survival rate though he would have to undergo surgeries and be in NICU and so on and so forth... i can only imagine what she and her husband went through, because i know when i found out i cried harder than when my grandmother died. it felt like i was learning that MY baby was going to be hurt, or might die. it was unbearable.
two days later, on sunday night, i got a call that she was in the ER because she was having contractions and had started premature labor. she was 23 weeks pregnant.
i rushed to the hospital and was there as they wheeled her into her room in shands' labor and delivery, where she told me she was dilated to 5cm* but thankfully her waters hadn't broken. they pumped her full of nifedipine to stop the contractions and they gave her steroid shots for the baby's lungs just in case he was delivered--at 23 weeks his lungs were not even close to being ready to take in air. she was confined to 100% bed rest with her feet inclined above her head to reduce pressure on her cervix, and stuck in the hospital with the understanding that she wouldn't be going home until she delivered, whether it be in 3 days or 3 months. we were all terrified and didn't know what to do, considering this baby was not only trying to be premature but also had complications that would put even a full-term baby at risk... all we could do was visit her and try to be encouraging, which we all did.
melissa made it 10 days drugged in misery, fear, pain (from ongoing contractions), and humiliation (bed pans and sponge baths) before Kai Lani was born on tuesday 10/27/09. he was 24.5 weeks gestational age, just over halfway "cooked." his birth was uneventful; melissa had a series of 3 contractions back-to-back suddenly, my mom called me, and he was born before i made the 6 minute trip to the hospital from my house. two pushes was all it took, as he was already nearly falling out of her by that point. he breathed on his own, he was vigorous, and they rushed him to NICU.
that was a bad night. after they took her baby away from her, they left melissa with us in her room to deal with the flood of birth hormones and the absence of her baby, which she was heartbroken over despite her best efforts to remain unattached out of self-preservation. we waited and waited for them to come in and tell us he was ok and that we could see him, but when they finally came in it was with the subtly-ominous words "we need you now" as they practically dragged melissa into the wheelchair... the RN actually allowed my mom and i to go in even though the rules say only 2 people per baby, which confirmed what i thought i had heard in her voice... we were about to lose him and it was time to say goodbye. i was completely distraught but trying SO hard to keep my shit together for melissa's sake but it was possibly the hardest thing i've ever done. i think she was numb. we went over to his little bed/machine and we learned he had been without a heartbeat for 10 minutes (though they were doing constant chest compressions on his tiny body)... watching them press on him and mess with tubes in his throat and thinking that he was dying pushed me over the edge and i started hyperventilating and completely broke down; thankfully the nurse saw me before i let it out and she rushed me out the door at which point i lost it, just sobbing uncontrollably in total despair and sorrow for melissa, for james, for that poor little baby and for the rest of us. i just couldn't watch them do what they were doing to his little fragile body, even though i knew they were trying to save him... i don't know where melissa got the strength to endure, but she amazed me that night. i am not nearly as strong as she is.
eventually melissa and james came back to the room sort of blankly staring, but they said he was ok. we were visited by a few other doctors who explained a lot about prematurity and gastroschisis and how it's not good that he had an "event" like that on his first night, so the outlook was uncertain. they said they would do a brain ultrasound after a few days to check for any serious hemorrhage that might indicate brain damage, as melissa and james had decided they didn't want to put him through a life that would be unfulfilling for him if he has serious mental disability. again, i don't know how they can be so strong. i think they are making the compassionate choice but i don't think i could do that myself... i wouldn't be able to willingly let go.
so far he's done well, he's been stable and they say he's "kicking and screaming" which is a good thing. they say there have not been any obvious signs of brain damage, so that's good but not a definite. he needs a blood transfusion so either james or me will be the ones to give it, depending on what melissa wants (james smokes/drinks so his blood isn't as "clean" as mine, as i take no meds, etc). he is so, so tiny though. it's painful to watch him be in the incubator...he should be cozy and safe inside melissa's womb for another few months. but it is absolutely amazing that the technology exists to keep him safe even outside the body. i'm not going to go into detail about all the things they have to do to him, the tubes in his body, etc, because it just makes me hurt inside, but i am grateful that they have done so much already. i just hope he continues to be ok and comes out as normal as possible... but i think everything happens for a reason, so whatever is is as it should be.
melissa and james are holding up ok. it's not easy, but they visit kai something like twice a day and melissa is pumping diligently to make sure he has breast milk when it is time for him to take it. they can't touch him yet. they'll do the head ultrasound tuesday or thursday, so until then there is a lot of anxiety because no one knows what will ultimately happen to the little guy. for my part, it is so, so hard to think that he might be severely impaired and they decide not to continue keeping him alive. i don't know how or why, but i love that baby so much and i just want him to grow up and be rowan's cousin...
as a side note, visiting the NICU (again yesterday) was a very difficult experience. i was happy to see kai, and while he is a pathetic little creature, what was even harder was hearing all the other tiny babies cry, their premature cries so soft and plaintive, just wanting to be comforted and held and kept safe. for the most part, no one was there to visit them, though there was at least one attendant for every baby... but the attendants don't hold them. i realize people have to work, but how can you leave your baby in a box and not be there when it cries? i was overwhelmed a few times, just desperate to give them love but not allowed to... being surrounded by so much helplessness and vulnerability crying out for attention was quite too much for me. for a moment i considered a career path that would let me care for them, but i realized it would kill me to have to do anything that might hurt them even for their best interests.
equally so, i mourn the loss of my sister's pregnancy... she did not get to experience enough of the joy of carrying a baby, of feeling his kicks get stronger over time, of having a glorious belly, of being so big and uncomfortable you can't get around easily, of slowly learning who her baby is, of desperately WANTING that baby and wanting not to be pregnant anymore. and of just being happy about the birth, of having a shower and planning the room, and daydreaming about what he will look like and when he'll be born. kai's birth was all fear and worry and reluctance, and melissa's experience was cut so short she didn't have a chance to appreciate being pregnant. it sucks.
i have learned something about myself through rowan's birth and now kai's, however. i still do believe that nature dictates that some babies and some mothers die during childbirth, and that that is the normal way of life; but i also realize that the bottom line is, when it's you, and the technology exists to save yourself or your baby, you can't refuse it. maybe it goes against nature, but it is OUR nature to do anything to save our own lives and the lives of our children. until there is no choice, there is no choice. i get it, and even if i philosophically disagree with them, my actions speak to my reality.
please send happy thoughts of love and healing to kai, to melissa, and to james. they need it.
*if you do not know much about pregnancy and childbirth here's a quick breakdown: the cervix should be tightly closed until labor starts, at which time contractions begin to slowly--sometimes, usually for first time moms, VERY slowly--open the cervix. the goal is 10cm, but a mom is considered in "active labor," which means screaming in pain and breathing like in the movies, at 4cm.
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