emma was born at 2am. by 4am they were doing her first echocardiogram. as we sat and watched we realized that as good as it felt like she was doing, she was still a very sick baby. the technician performing the test wouldn't talk with us but we knew what we were looking at. we'd seen it time and time again. however this time there was a new problem. she had a pda, or 'Patent Ductus Arteriosus'.
by 6 am we had a clearer picture of what was going on. she was having trouble maintaining her body temperature. she was having trouble maintaining her blood sugar levels. her heart sounded very sluggish when you listened to it. but she was breathing on her own and she was in what they called 'stable, but guarded' condition. her pulseox was 97 indicating that the oxygenated blood was circulating. they had told us her pulseox would be extremly low when i asked what a normal baby's would be they said that 90 or above was normal... her's was 97!
following the first echo they said they could see no signs of aortic stenosis or coarctation of the aorta. (that was what they thought had been causing the extra stress on her heart resulting in the ventricular hypertrophy.) so that ruled out the need for an immediate surgery. she would now be able to wait until she was a few days old before we'd have to do the first surgery.
they had the chief nurse of the nicu as her nurse, never leaving her side. we weren't allowed to hold her at this point, but we could sit with her. i kept asking when they were going to feed her as i thought she should be hungry, but they had to wait to see how she was going to handle the next few hours. and was emma ever ready to show us a thing or two over the next few hours!
the doctors told us that they couldn't explain how her heart was functioning as well as it was given all the structural defects it had. they said it was most likely due to the PDA, keeping her on fetal circulation. they explained that most pda's close on their own within 48 hours after birth, but when hers closed it could be very serious. once it closed she would move from fetal circulation to normal circulation and we would at that point see just how effective her heart really is. she could potentially go into cardiac arrest when it closed. we asked how to know when that would happen and they explained it was a wait and see kind of game.
when she was about 12 hours old they decided they would try to feed her... just a few cc's. sucking, swallowing, and breathing all at the same time could be a challenge. she did great, surprising everyone!
by the evening we were tired. neither of us had rested at all in 2 days so the nurses were insistent that i go to bed and get some sleep. they had her on a 3 hour schedule. every 3 hours they would check temperature, blood sugar, try to feed her just a tiny bit, change her diaper, document all vitals, etc. so we could be with her for about 30 minutes every 3 hours throughout the night. we were there together at the 11pm session. we got back to our room at almost midnight, got our beds together, changed into pajamas, let my nurses check me out, and then it was time to go back again! no rest for the weary. we came back together at the 2am session and they told me that i could try nursing her this time! hold on... this is the baby that just 24 hours ago had us all holding our breath and now i'm nursing her?! i cried as i sat there in the nicu nursing my precious baby. the nurse made me promise that i wouldn't come back at 5am. she wanted me to get sleep. jimmie was going to come back at 5am and we'd come together at 8am and see the doctors with her. but the 5am session didn't quite go as planned.
jimmie was holding her, feeding her expressed milk from a bottle. she was all hooked up to the monitors and all of a sudden everything started beeping, the alarms going off. her heart rate was dropping. her pulse ox kept decreasing. the nurses jumped up and ran to his side. they grabbed emma from him and put her on the table. the numbers on the screen kept going down and down. and then as suddenly as they had dropped they started climbing back up, steadily moving back to the normal range. the alarms stopped. everyone stepped back to watch her. she was breathing, she was oxygenated, her heart rate was normal, she was lying there perfectly content. we learned later that her pda had closed and her heart was switching to regular circulation.
on her 2nd day they did another echocardiogram and a electrocardiogram. her pda had closed the night before, the fluid around her heart was gone, the walls weren't appearing as thick as they once had, and there were still no signs of aortic stenosis or coarctation. that was all great news!! however, ebstein's was still apparent, the tricuspid valve still wasn't able to close due to it's displacement and there was significant tricuspid regurgitation. the pfo, her septal defect, had tried to close with the change from fetal circulation to regular circulation but it didn't close all the way and was still leaking blood. all of this meant that her heart shouldn't be circulating blood, but it was and the cardiologist couldn't explain it. he said that we needed to continue monitoring her to ensure consistent oxygenation and heart rates. the only surgeries we were discussing at this point was the series of surgeries to correct the tricuspid valve. we would continue to watch the blood regurgitation to determine how soon that surgery would need to take place, but we may be able to wait up to a week before having to do it at this point, giving her time to grow and get stronger.
throughout the next 18 hours they were able to wean her off the glucose drip and she maintained her own blood sugar levels. she also began maintaining her own body temperature. she was able to nurse for about half her feedings at this point.
when we came into the nicu on thursday, she was in a regular bed (not heated), dressed in a pink onesie (with all her cords coming out the bottom! so cute!), and we were told i could nurse her for all feedings now. how amazing was that?! she was staying awake for quite a bit at a time now. she was sooo sweet! we were able to have the other kids come in one at a time to meet her. they didn't hold her, but they rubbed her head and gave her kisses on her cheek. it was beginning to feel 'normal' a little bit.
emma had been on an iv of antibiotics since birth to help protect her and ensure she would be able to have surgery at a moment's notice. they dosed the iv every 4 hours. when the cardiologist and neonatologist met on thursday they said that she would be off the antibiotics within the next 18 hours and if she continued doing as good as she was doing they didn't see any reason to keep her. she was eating, digesting, expelling as she should. she was maintaining all her levels (sugar, temp, pulse, heart rate, etc.) and although her heart was structurally defective it was somehow functioning. they said they may be able to send her to the care-by-parent rooms the next day and if she continued doing well she could go home. they had taught us how to check her heart rate without looking at the machines, we knew what to look for to see poor oxygenation, we were aware of all the warning signs of her heart enlarging. we would take her to the cardiologist within 2 days for continued checks, but we could take her home! what?! she wasn't supposed to be coming home!!! Praise God!!!
we could hardly believe our ears. jimmie and i did the 8pm feeding and then i went back to my room to pack up to move to care-by-parent. jimmie went home to get the car seat, still hardly believing it was possible to bring her home. he got back just in time for the 11pm feeding. we buzzed into the nicu, scrubbed up, and started to head back to her bed when a nurse stopped us. she asked us to wait as they were doing a procedure in the back. we were used to having to leave when they did procedures on emma or any of the babies. we waited and waited and waited. i went back to the desk and asked if we could go back yet. she said, 'no, not yet. they are still working on emma.' wait, what??? there was nothing they should be doing on emma. what was wrong? now all of a sudden the screaming baby in the background had a name... it was emma! she hadn't cried at all to this point and we could now hear her screaming all the way across the nicu. what was wrong? what were they doing? did they realize she shouldn't be screaming like that??? with every cry i got a little more scared. we had no idea how much stress her little heart could take and here she was screaming so hard! the worst of fears went through my head and i wondered if i was about to lose my baby right there. they finally came up to us and explained that when they tried to dose her last antibiotic it blew her vein. so they tried to insert her iv into a new vein. every place they tried to insert it her veins collappsed. after trying several times in both hands, arms, and feet they moved to her little head. they'd called in the nurse that does the iv's on the life-flights... she was supposed to be the best. and even she couldn't get it placed in her scalp. they finally got permission to just not place the iv. she would do without her last dose of antibiotics. we went back to see her and she was exhausted. she was bruised all over her hands and feet and all around her head. she was sweaty and so tired she wouldn't eat. we were so worried that this had set her back. just when we thought she might be able to come home, just when jimmie had brought the car seat of all things to the hospital, just when we thought things were great... it was so disappointing. if she missed a feeding her blood sugar levels would be off in the next few hours and then they'd put her back on glucose and we were right back at square one. she went to sleep at about 1am and we went back to our room. when we came back at 2 for the next feeding she was sleeping and wouldn't wake, we just knew her morning glucose check would be horrible. the nurse agreed that we should be prepared for it to not be good. but by 5am she was hungry and ate better than ever... and her glucose levels were perfect!
miracle, after miracle, after miracle. this baby was doing miraculously well!!!
they had us take a few more classes... we were getting ready to bring our baby home!
by 6 am we had a clearer picture of what was going on. she was having trouble maintaining her body temperature. she was having trouble maintaining her blood sugar levels. her heart sounded very sluggish when you listened to it. but she was breathing on her own and she was in what they called 'stable, but guarded' condition. her pulseox was 97 indicating that the oxygenated blood was circulating. they had told us her pulseox would be extremly low when i asked what a normal baby's would be they said that 90 or above was normal... her's was 97!
following the first echo they said they could see no signs of aortic stenosis or coarctation of the aorta. (that was what they thought had been causing the extra stress on her heart resulting in the ventricular hypertrophy.) so that ruled out the need for an immediate surgery. she would now be able to wait until she was a few days old before we'd have to do the first surgery.
they had the chief nurse of the nicu as her nurse, never leaving her side. we weren't allowed to hold her at this point, but we could sit with her. i kept asking when they were going to feed her as i thought she should be hungry, but they had to wait to see how she was going to handle the next few hours. and was emma ever ready to show us a thing or two over the next few hours!
the doctors told us that they couldn't explain how her heart was functioning as well as it was given all the structural defects it had. they said it was most likely due to the PDA, keeping her on fetal circulation. they explained that most pda's close on their own within 48 hours after birth, but when hers closed it could be very serious. once it closed she would move from fetal circulation to normal circulation and we would at that point see just how effective her heart really is. she could potentially go into cardiac arrest when it closed. we asked how to know when that would happen and they explained it was a wait and see kind of game.
when she was about 12 hours old they decided they would try to feed her... just a few cc's. sucking, swallowing, and breathing all at the same time could be a challenge. she did great, surprising everyone!
by the evening we were tired. neither of us had rested at all in 2 days so the nurses were insistent that i go to bed and get some sleep. they had her on a 3 hour schedule. every 3 hours they would check temperature, blood sugar, try to feed her just a tiny bit, change her diaper, document all vitals, etc. so we could be with her for about 30 minutes every 3 hours throughout the night. we were there together at the 11pm session. we got back to our room at almost midnight, got our beds together, changed into pajamas, let my nurses check me out, and then it was time to go back again! no rest for the weary. we came back together at the 2am session and they told me that i could try nursing her this time! hold on... this is the baby that just 24 hours ago had us all holding our breath and now i'm nursing her?! i cried as i sat there in the nicu nursing my precious baby. the nurse made me promise that i wouldn't come back at 5am. she wanted me to get sleep. jimmie was going to come back at 5am and we'd come together at 8am and see the doctors with her. but the 5am session didn't quite go as planned.
jimmie was holding her, feeding her expressed milk from a bottle. she was all hooked up to the monitors and all of a sudden everything started beeping, the alarms going off. her heart rate was dropping. her pulse ox kept decreasing. the nurses jumped up and ran to his side. they grabbed emma from him and put her on the table. the numbers on the screen kept going down and down. and then as suddenly as they had dropped they started climbing back up, steadily moving back to the normal range. the alarms stopped. everyone stepped back to watch her. she was breathing, she was oxygenated, her heart rate was normal, she was lying there perfectly content. we learned later that her pda had closed and her heart was switching to regular circulation.
on her 2nd day they did another echocardiogram and a electrocardiogram. her pda had closed the night before, the fluid around her heart was gone, the walls weren't appearing as thick as they once had, and there were still no signs of aortic stenosis or coarctation. that was all great news!! however, ebstein's was still apparent, the tricuspid valve still wasn't able to close due to it's displacement and there was significant tricuspid regurgitation. the pfo, her septal defect, had tried to close with the change from fetal circulation to regular circulation but it didn't close all the way and was still leaking blood. all of this meant that her heart shouldn't be circulating blood, but it was and the cardiologist couldn't explain it. he said that we needed to continue monitoring her to ensure consistent oxygenation and heart rates. the only surgeries we were discussing at this point was the series of surgeries to correct the tricuspid valve. we would continue to watch the blood regurgitation to determine how soon that surgery would need to take place, but we may be able to wait up to a week before having to do it at this point, giving her time to grow and get stronger.
throughout the next 18 hours they were able to wean her off the glucose drip and she maintained her own blood sugar levels. she also began maintaining her own body temperature. she was able to nurse for about half her feedings at this point.
when we came into the nicu on thursday, she was in a regular bed (not heated), dressed in a pink onesie (with all her cords coming out the bottom! so cute!), and we were told i could nurse her for all feedings now. how amazing was that?! she was staying awake for quite a bit at a time now. she was sooo sweet! we were able to have the other kids come in one at a time to meet her. they didn't hold her, but they rubbed her head and gave her kisses on her cheek. it was beginning to feel 'normal' a little bit.
emma had been on an iv of antibiotics since birth to help protect her and ensure she would be able to have surgery at a moment's notice. they dosed the iv every 4 hours. when the cardiologist and neonatologist met on thursday they said that she would be off the antibiotics within the next 18 hours and if she continued doing as good as she was doing they didn't see any reason to keep her. she was eating, digesting, expelling as she should. she was maintaining all her levels (sugar, temp, pulse, heart rate, etc.) and although her heart was structurally defective it was somehow functioning. they said they may be able to send her to the care-by-parent rooms the next day and if she continued doing well she could go home. they had taught us how to check her heart rate without looking at the machines, we knew what to look for to see poor oxygenation, we were aware of all the warning signs of her heart enlarging. we would take her to the cardiologist within 2 days for continued checks, but we could take her home! what?! she wasn't supposed to be coming home!!! Praise God!!!
we could hardly believe our ears. jimmie and i did the 8pm feeding and then i went back to my room to pack up to move to care-by-parent. jimmie went home to get the car seat, still hardly believing it was possible to bring her home. he got back just in time for the 11pm feeding. we buzzed into the nicu, scrubbed up, and started to head back to her bed when a nurse stopped us. she asked us to wait as they were doing a procedure in the back. we were used to having to leave when they did procedures on emma or any of the babies. we waited and waited and waited. i went back to the desk and asked if we could go back yet. she said, 'no, not yet. they are still working on emma.' wait, what??? there was nothing they should be doing on emma. what was wrong? now all of a sudden the screaming baby in the background had a name... it was emma! she hadn't cried at all to this point and we could now hear her screaming all the way across the nicu. what was wrong? what were they doing? did they realize she shouldn't be screaming like that??? with every cry i got a little more scared. we had no idea how much stress her little heart could take and here she was screaming so hard! the worst of fears went through my head and i wondered if i was about to lose my baby right there. they finally came up to us and explained that when they tried to dose her last antibiotic it blew her vein. so they tried to insert her iv into a new vein. every place they tried to insert it her veins collappsed. after trying several times in both hands, arms, and feet they moved to her little head. they'd called in the nurse that does the iv's on the life-flights... she was supposed to be the best. and even she couldn't get it placed in her scalp. they finally got permission to just not place the iv. she would do without her last dose of antibiotics. we went back to see her and she was exhausted. she was bruised all over her hands and feet and all around her head. she was sweaty and so tired she wouldn't eat. we were so worried that this had set her back. just when we thought she might be able to come home, just when jimmie had brought the car seat of all things to the hospital, just when we thought things were great... it was so disappointing. if she missed a feeding her blood sugar levels would be off in the next few hours and then they'd put her back on glucose and we were right back at square one. she went to sleep at about 1am and we went back to our room. when we came back at 2 for the next feeding she was sleeping and wouldn't wake, we just knew her morning glucose check would be horrible. the nurse agreed that we should be prepared for it to not be good. but by 5am she was hungry and ate better than ever... and her glucose levels were perfect!
miracle, after miracle, after miracle. this baby was doing miraculously well!!!
they had us take a few more classes... we were getting ready to bring our baby home!
Psalm 33:4 For the word of the Lord if right and true, He is faithful in all he does.
No comments:
Post a Comment