momto3g3b
03-05-2006, 02:39 AM
On Thursday, March 2nd, Charley, my best friend, Karen, and I left for the hospital at 6:15am. When I showed up to check in at 6:30am, the nurse expressed surprise that I was there so early, asking me, "What time is your surgery?" I answered, "8:30," and was told, "Oooohhh, I think yours was rescheduled." I did a double-take and said, "Uh, a PHONE CALL would have been nice! What time was it rescheduled FOR?" I was told 12:15pm, but then the nurse told me she'd call and find out what was going on, so I should come on in and get settled in a room rather than go home. So that's what we did.
Charley turned on some music videos to help pass the time and I got to change into a lovely hospital gown, then get monitored for the last time. While the nurse was taking my vitals, another nurse came in and said that she'd talked with Dr. K (my ob) and yes, there'd been a scheduling mix-up on the hospital's end of things, but Dr. K was getting everyone assembled and we were going to start at 7:30am rather than 8:30am, so she was there to "double-team" me and help get things ready. That news bumped up my nervousness about 10 points, but overall, I figured it was better to get things done sooner than later. You know, just get it over with! So...I was shaved a bit where the incision would be, got an IV placed and was given a little bit of something to drink that helps prevent nausea/heartburn and tastes like a sweet tart, with emphasis on the tart. Then, all ready to go, I laid back in the bed and watched a really horrible video with Madonna in it (she needs to stop wearing leotards, lol). At 7:30am, the door opened and a nurse popped her head in the room. My nurse asked, "Are we ready to go?" and the other nurse replied, "Um, nope. You've been bumped back to 10:30." My nurse thought she was kidding, but it was true. I had another 3 hours to wait!!! Charley & Karen went to get something to eat and I read a magazine, watched some tv, and spent some time praying about the upcoming surgery.
Finally, at 10:30am, it was time to go. I walked to the operating room and when I got there, was immediately overcome with the shakes due to nervousness. The anesthesiologist was awesome and very reassuring to me, one of the nurses covered me with a warm blanket, and then my ob came in. She said she knew I was nervous and wanted to be with me while I got my spinal put in. How's *that* for a nice doctor?
The spinal hurt worse than my previous 2, but once it was in, the worst was over. My ob was incredible because she talked to me throughout the procedure, telling me what she was doing and making sure I was okay throughout it all. Charley held my hand and stroked my hair (through the sterile cap I was wearing), the anesthesiologist kept telling me how great I was doing and making sure I was feeling all right, and I had 2 nurses nearby saying positive things, as well. When Joshua was born, Dr. K immediately held him up for me to see before handing him off to the nurse.
My friend, Karen, took pictures of the birth and the time immediately afterward when the neonatologist and nurses were working on Joshua. He was very purple at first and stayed that way for a while since he'd inhaled a lot of amniotic fluid when taking his first breath & therefore had very wet lungs. His Apgars were 7 at one minute and 8 at five minutes. It was during this initial assessment that one of the nurses noticed the abnormality on Joshua's back and mentioned it to the neonatologist. She (the doctor) looked at it and said it looked like it could be spina bifida. Karen heard that and motioned for Charley to come over, so he left his position by my head and went over to where Karen was, right beside Joshua. I watched Charley's eyebrows furrow and then he peeked over a nurse's shoulder to look at the baby before coming back over to me. I asked him what was wrong and he answered that the baby was purple for a while, but was pinking up nicely now. I glared and demanded, "No, Charley, what is WRONG?!?" He sat down, picked up my hand (my arms were still strapped down) and leaned near my ear, telling me that Joshua had an area on his back that didn't look right and the neonatologist had said it could be spina bifida. At the mention of that condition, tears squeezed from my eyes and I just stared across the room at my baby. I could not understand how spina bifida could even be a possibility when I'd been under the care of a perinatologist for the past 20 weeks, a man who had checked my baby's spine several times and declared everything to be just fine. It didn't make sense to me at all and suddenly all of my joy at the birth of my son turned to apprehension as I had to lie there and wonder what was going on.
The neonatologist came over and said that she was taking Joshua to the NICU and I just nodded at her. One of my angel nurses asked if the doctor could wait for "just a sec" so I could see the baby before she took him away and as soon as she heard the word "yes," went and got my baby for me. I got to hold Joshua for about 45 seconds before he was taken out of the room, and I was immediately struck by how much he looked like Emily. I gave him a few kisses and told him I loved him and then he was gone, out of my arms, and I was off to my room to recover from the anesthetic.
I didn't get to see Joshua for another 8 hours, as he was having problems with his breathing and jaundice levels. That was expected, of course, but I hadn't realized I wouldn't be able to see him at all and I struggled with wanting to go to NICU and not being able to. The nurses kept telling me I'd have to wait because doctors were assessing Joshua's back and his jaundice/anemia levels and trying to figure everything out. I was given a breast pump and I expressed 2 ounces of colostrum, which was taken over to NICU by a nurse for them to feed Joshua.
Finally, I'd had enough of waiting and Karen went to find a wheelchair for me to ride to NICU in. She helped me get in, get situated, and then she pushed me to NICU, where I finally got to see my little boy. When I got there, I asked if I could nurse him because he was rooting around, trying to get his fist into his mouth, and I was told that I couldn't. Apparently, when they'd fed Joshua some of the colostrum I'd expressed, he had trouble with his breathing (much too rapid), so they decided that he couldn't eat anymore until his respirations were brought under control. So I was left there, sitting beside my baby boy, unable to hold him or nurse him at all. I gave him a pacifier to suck on and I let him hold my finger as I stroked the soft skin on his arm and hand. It wasn't nearly enough, but it was something and better than nothing.
I had difficulty sleeping that night, so at 4:30 in the morning, I went back to the NICU and asked to hold my baby. The nurses on shift were *very* nice and immediately offered assistance to me ~ one got me a recliner to sit in while another wrapped Joshua up in a blanket and got all of his wires and monitors arranged. They handed him to me (ahhhhh, bliss) and I sat there for 3 hours, just rocking him. I was told I still couldn't nurse him due to his unsteady respirations, which sort of upset me because it felt incredibly WRONG to be holding my baby and when he started to fuss, to have to offer him a pacifier instead of a breast for comfort, but I complied because I didn't think I had any other choice but to do so.
At 7:30, it was almost shift change and it was definitely time for my pain meds, so I went back to my room, where Karen was awake and dressed for the day, and we ordered breakfast and sat around, chatting. At 9am, we went back to NICU to hold Joshua some more. I was hoping I'd get the chance to breastfeed him, but it didn't happen. At 11:30, Karen and I went back to my room so I could get more pain meds and some lunch. I got the medication, but at 11:50, before we could order lunch, my phone rang. It was Susan, the NICU nurse who was taking care of Joshua, calling to tell me the radiologist was there, getting ready to do Joshua's ultrasound. Karen and I went right over to the NICU and got there in time to watch the ultrasound. When it was over, the radiologist came over to me and showed me the abnormalities in Joshua's spine. He told me, "Your son has a lipomyelomeningocele and a dorsal meningocele. This is a form of spina bifida. Someone will sit down and discuss this in-depth with you and your son will need surgery soon to address the problem." Then he WALKED AWAY without saying another word or waiting to see if I had any questions or comments. The guy had the social skills of a rock. And as he walked away, I started crying. I felt like someone had punched me in the heart and it physically HURT. Karen was crying with me and hugging me, and two of the NICU nurses came over to hug both of us. When I finally gained my composure, I kissed Joshua, left the NICU and went to my room so I could call Charley. He was planning to come up with all of the kids and I knew I couldn't tell him the results of the ultrasound with all of the kids there, so as much as I didn't want to do it over the phone, I had to.
It was one of the hardest conversations I've had to have and also one of the most incoherent. I choked out that Joshua had spina bifida and then started crying again. Charley, for the first time EVER with all of our kids' medical and neurological trials, started crying as he asked, "WHY US???? Why is this happening to another one of our children?" He has never asked "why us" and it broke my heart to hear those words, because I realized immediately that the line has finally been crossed. Both Charley and I have reached our limit and he was vocalizing it, telling God we can't handle any more of this.
After a few minutes, I had to hang-up with Charley because our pediatrician walked in to talk to me. He sat down and said how sorry he was about the diagnosis, then launched into what the plan was ~ that Joshua was going to be transferred to Portland right away and that he'd see a neurosurgeon, have testing done, and we'd go from there. I completely lost it and was just sobbing while he talked. Normally I can listen, ask intelligent questions and whatnot, but this time, I just couldn't do it. All I could hear was that my baby, my 1-day old son who I hadn't even been able to breastfeed yet, was going to be sent over 300 miles away for God knew how long. I knew I couldn't go with him, either. My heart was breaking into a million pieces and I had trouble breathing. It was a horrible, horrible conversation.
You know, Charley and I weren't sure what we were supposed to name this baby, but we both felt *very* strongly that the meaning of his name was important. Joshua Gabriel means "God is my salvation and my strength". Now, in light of the diagnosis and his being flown to Portland at 27 hours old to undergo testing for spina bifida treatment, both Charley and I believe we named him appropriately. God saved Joshua during the pregnancy when there was the blood incompatibility. He didn't let the anemia get to a severe stage to where we would have had to deliver Joshua early. He protected Joshua from major complications during delivery and afterward, as well. And now, God will be Joshua's strength as he faces the challenge of spina bifida. We don't yet know what the prognosis will be ~ whether our son will be mildly affected or more severely compromised, but both Charley and I believe that God *will* be Joshua's strength as he faces whatever challenges lie ahead. And his name is a continual reminder to both Charley and me that God is with our child, that He will both save and protect him, and that is a comfort to both of us.
Charley turned on some music videos to help pass the time and I got to change into a lovely hospital gown, then get monitored for the last time. While the nurse was taking my vitals, another nurse came in and said that she'd talked with Dr. K (my ob) and yes, there'd been a scheduling mix-up on the hospital's end of things, but Dr. K was getting everyone assembled and we were going to start at 7:30am rather than 8:30am, so she was there to "double-team" me and help get things ready. That news bumped up my nervousness about 10 points, but overall, I figured it was better to get things done sooner than later. You know, just get it over with! So...I was shaved a bit where the incision would be, got an IV placed and was given a little bit of something to drink that helps prevent nausea/heartburn and tastes like a sweet tart, with emphasis on the tart. Then, all ready to go, I laid back in the bed and watched a really horrible video with Madonna in it (she needs to stop wearing leotards, lol). At 7:30am, the door opened and a nurse popped her head in the room. My nurse asked, "Are we ready to go?" and the other nurse replied, "Um, nope. You've been bumped back to 10:30." My nurse thought she was kidding, but it was true. I had another 3 hours to wait!!! Charley & Karen went to get something to eat and I read a magazine, watched some tv, and spent some time praying about the upcoming surgery.
Finally, at 10:30am, it was time to go. I walked to the operating room and when I got there, was immediately overcome with the shakes due to nervousness. The anesthesiologist was awesome and very reassuring to me, one of the nurses covered me with a warm blanket, and then my ob came in. She said she knew I was nervous and wanted to be with me while I got my spinal put in. How's *that* for a nice doctor?
The spinal hurt worse than my previous 2, but once it was in, the worst was over. My ob was incredible because she talked to me throughout the procedure, telling me what she was doing and making sure I was okay throughout it all. Charley held my hand and stroked my hair (through the sterile cap I was wearing), the anesthesiologist kept telling me how great I was doing and making sure I was feeling all right, and I had 2 nurses nearby saying positive things, as well. When Joshua was born, Dr. K immediately held him up for me to see before handing him off to the nurse.
My friend, Karen, took pictures of the birth and the time immediately afterward when the neonatologist and nurses were working on Joshua. He was very purple at first and stayed that way for a while since he'd inhaled a lot of amniotic fluid when taking his first breath & therefore had very wet lungs. His Apgars were 7 at one minute and 8 at five minutes. It was during this initial assessment that one of the nurses noticed the abnormality on Joshua's back and mentioned it to the neonatologist. She (the doctor) looked at it and said it looked like it could be spina bifida. Karen heard that and motioned for Charley to come over, so he left his position by my head and went over to where Karen was, right beside Joshua. I watched Charley's eyebrows furrow and then he peeked over a nurse's shoulder to look at the baby before coming back over to me. I asked him what was wrong and he answered that the baby was purple for a while, but was pinking up nicely now. I glared and demanded, "No, Charley, what is WRONG?!?" He sat down, picked up my hand (my arms were still strapped down) and leaned near my ear, telling me that Joshua had an area on his back that didn't look right and the neonatologist had said it could be spina bifida. At the mention of that condition, tears squeezed from my eyes and I just stared across the room at my baby. I could not understand how spina bifida could even be a possibility when I'd been under the care of a perinatologist for the past 20 weeks, a man who had checked my baby's spine several times and declared everything to be just fine. It didn't make sense to me at all and suddenly all of my joy at the birth of my son turned to apprehension as I had to lie there and wonder what was going on.
The neonatologist came over and said that she was taking Joshua to the NICU and I just nodded at her. One of my angel nurses asked if the doctor could wait for "just a sec" so I could see the baby before she took him away and as soon as she heard the word "yes," went and got my baby for me. I got to hold Joshua for about 45 seconds before he was taken out of the room, and I was immediately struck by how much he looked like Emily. I gave him a few kisses and told him I loved him and then he was gone, out of my arms, and I was off to my room to recover from the anesthetic.
I didn't get to see Joshua for another 8 hours, as he was having problems with his breathing and jaundice levels. That was expected, of course, but I hadn't realized I wouldn't be able to see him at all and I struggled with wanting to go to NICU and not being able to. The nurses kept telling me I'd have to wait because doctors were assessing Joshua's back and his jaundice/anemia levels and trying to figure everything out. I was given a breast pump and I expressed 2 ounces of colostrum, which was taken over to NICU by a nurse for them to feed Joshua.
Finally, I'd had enough of waiting and Karen went to find a wheelchair for me to ride to NICU in. She helped me get in, get situated, and then she pushed me to NICU, where I finally got to see my little boy. When I got there, I asked if I could nurse him because he was rooting around, trying to get his fist into his mouth, and I was told that I couldn't. Apparently, when they'd fed Joshua some of the colostrum I'd expressed, he had trouble with his breathing (much too rapid), so they decided that he couldn't eat anymore until his respirations were brought under control. So I was left there, sitting beside my baby boy, unable to hold him or nurse him at all. I gave him a pacifier to suck on and I let him hold my finger as I stroked the soft skin on his arm and hand. It wasn't nearly enough, but it was something and better than nothing.
I had difficulty sleeping that night, so at 4:30 in the morning, I went back to the NICU and asked to hold my baby. The nurses on shift were *very* nice and immediately offered assistance to me ~ one got me a recliner to sit in while another wrapped Joshua up in a blanket and got all of his wires and monitors arranged. They handed him to me (ahhhhh, bliss) and I sat there for 3 hours, just rocking him. I was told I still couldn't nurse him due to his unsteady respirations, which sort of upset me because it felt incredibly WRONG to be holding my baby and when he started to fuss, to have to offer him a pacifier instead of a breast for comfort, but I complied because I didn't think I had any other choice but to do so.
At 7:30, it was almost shift change and it was definitely time for my pain meds, so I went back to my room, where Karen was awake and dressed for the day, and we ordered breakfast and sat around, chatting. At 9am, we went back to NICU to hold Joshua some more. I was hoping I'd get the chance to breastfeed him, but it didn't happen. At 11:30, Karen and I went back to my room so I could get more pain meds and some lunch. I got the medication, but at 11:50, before we could order lunch, my phone rang. It was Susan, the NICU nurse who was taking care of Joshua, calling to tell me the radiologist was there, getting ready to do Joshua's ultrasound. Karen and I went right over to the NICU and got there in time to watch the ultrasound. When it was over, the radiologist came over to me and showed me the abnormalities in Joshua's spine. He told me, "Your son has a lipomyelomeningocele and a dorsal meningocele. This is a form of spina bifida. Someone will sit down and discuss this in-depth with you and your son will need surgery soon to address the problem." Then he WALKED AWAY without saying another word or waiting to see if I had any questions or comments. The guy had the social skills of a rock. And as he walked away, I started crying. I felt like someone had punched me in the heart and it physically HURT. Karen was crying with me and hugging me, and two of the NICU nurses came over to hug both of us. When I finally gained my composure, I kissed Joshua, left the NICU and went to my room so I could call Charley. He was planning to come up with all of the kids and I knew I couldn't tell him the results of the ultrasound with all of the kids there, so as much as I didn't want to do it over the phone, I had to.
It was one of the hardest conversations I've had to have and also one of the most incoherent. I choked out that Joshua had spina bifida and then started crying again. Charley, for the first time EVER with all of our kids' medical and neurological trials, started crying as he asked, "WHY US???? Why is this happening to another one of our children?" He has never asked "why us" and it broke my heart to hear those words, because I realized immediately that the line has finally been crossed. Both Charley and I have reached our limit and he was vocalizing it, telling God we can't handle any more of this.
After a few minutes, I had to hang-up with Charley because our pediatrician walked in to talk to me. He sat down and said how sorry he was about the diagnosis, then launched into what the plan was ~ that Joshua was going to be transferred to Portland right away and that he'd see a neurosurgeon, have testing done, and we'd go from there. I completely lost it and was just sobbing while he talked. Normally I can listen, ask intelligent questions and whatnot, but this time, I just couldn't do it. All I could hear was that my baby, my 1-day old son who I hadn't even been able to breastfeed yet, was going to be sent over 300 miles away for God knew how long. I knew I couldn't go with him, either. My heart was breaking into a million pieces and I had trouble breathing. It was a horrible, horrible conversation.
You know, Charley and I weren't sure what we were supposed to name this baby, but we both felt *very* strongly that the meaning of his name was important. Joshua Gabriel means "God is my salvation and my strength". Now, in light of the diagnosis and his being flown to Portland at 27 hours old to undergo testing for spina bifida treatment, both Charley and I believe we named him appropriately. God saved Joshua during the pregnancy when there was the blood incompatibility. He didn't let the anemia get to a severe stage to where we would have had to deliver Joshua early. He protected Joshua from major complications during delivery and afterward, as well. And now, God will be Joshua's strength as he faces the challenge of spina bifida. We don't yet know what the prognosis will be ~ whether our son will be mildly affected or more severely compromised, but both Charley and I believe that God *will* be Joshua's strength as he faces whatever challenges lie ahead. And his name is a continual reminder to both Charley and me that God is with our child, that He will both save and protect him, and that is a comfort to both of us.