happy birthday, emma!
our little girl is turning one! she is a bundle of joy. she is walking around, toddling from one activity to the next. she is the center of attention and enjoys every seconds of it. when we think of all this year was 'supposed' to have held and what this year has actually been we are overwhelmed by the goodness and greatness of God. emma's name means strength and it truly describes her. she is a strong little girl, strong in body, strong in personality, strong in spirit. she brings hope to so many people around her. happy birthday, sweet girl!
2009 heart child!
Meet the 2009 Heart Child for the American Heart Association!
We were asked if we would let Emma represent the American Heart Association for the year and we were beyond surprised! We thought they would want a baby that had undergone treatments or surgery or something like that, but they were happy to have a child that was lucky enough to not need surgery. Her not having surgery doesn't change the impact the AHA had on our family over the past year. So she's the girl of the hour!
The American Heart Association's website was a primary resource of information for us throughout this process. It was the one place we could go to gain information, free of all the emotion. We learned treatment plans and gained an understanding of her heart and the defects it had. The only sense of control we had in all of this was knowledge. We felt the more knowledge we had the more control we had over her condition. We thank God for the resource of the AHA's website.
The thing most people don't know is this: MORE CHILDREN DIE EACH YEAR OF HEART DISEASE THAN ALL TYPES OF CHILDHOOD CANCER COMBINED! That's a crazy and sad statistic... and it's one that isn't well known. Our hope is that through Emma's story people become more aware of how heart disease impacts children. 36,000 babies are born each year with heart disease and most of the time it's unpreventable... that makes the need for successful treatment options that much more important. Through your support the AHA will continue to research and find treatment options to help children fight this nasty disease and go on to live amazing lives.
As you look at the healthy children in your life stop and say a prayer of thanks! And if you would like, we'd love to have you walk with us! If you don't want to walk, feel free to support our Heart Walk team financially. Please feel free to visit this website for more information: http://tinyurl.com/dzu2jf
Thank you from the bottom of our hearts! (and Emma's miracle heart too!)
We were asked if we would let Emma represent the American Heart Association for the year and we were beyond surprised! We thought they would want a baby that had undergone treatments or surgery or something like that, but they were happy to have a child that was lucky enough to not need surgery. Her not having surgery doesn't change the impact the AHA had on our family over the past year. So she's the girl of the hour!
The American Heart Association's website was a primary resource of information for us throughout this process. It was the one place we could go to gain information, free of all the emotion. We learned treatment plans and gained an understanding of her heart and the defects it had. The only sense of control we had in all of this was knowledge. We felt the more knowledge we had the more control we had over her condition. We thank God for the resource of the AHA's website.
The thing most people don't know is this: MORE CHILDREN DIE EACH YEAR OF HEART DISEASE THAN ALL TYPES OF CHILDHOOD CANCER COMBINED! That's a crazy and sad statistic... and it's one that isn't well known. Our hope is that through Emma's story people become more aware of how heart disease impacts children. 36,000 babies are born each year with heart disease and most of the time it's unpreventable... that makes the need for successful treatment options that much more important. Through your support the AHA will continue to research and find treatment options to help children fight this nasty disease and go on to live amazing lives.
As you look at the healthy children in your life stop and say a prayer of thanks! And if you would like, we'd love to have you walk with us! If you don't want to walk, feel free to support our Heart Walk team financially. Please feel free to visit this website for more information: http://tinyurl.com/dzu2jf
Thank you from the bottom of our hearts! (and Emma's miracle heart too!)
3 months old
emma went to the cardiologist at 3 weeks old and they again confirmed that her heart was functioning perfectly even though it shouldn't be able to given it's structural defects. when we looked at emma's heart we could all see that the valve was in the wrong place, that it wasn't closing, and that the atrium and ventricle were misshaped. however, when we did the EKG it showed that each chamber of her heart was functioning as it should be. unexplainable! we were to watch for any of the warning signs, but we decided that there was no need to pursue surgery at this point. we would pursue medication and/or surgery when and if the structural defects presented a functional problem.
when she returned at 3 months old the doctor came into the room somewhat frustrated. he kept saying 'this doesn't happen, this doesn't happen'. he got out her older files and showed them to us again, making us see what was once there. we were fully aware of what her heart had looked like. he then laid out the newest pictures of her heart. the valve was closed, the chambers now symmetrical. he explained that this can't happen... ebstein's doesn't correct itself, and yet it appears that it has. her heart is structurally perfect, perfectly functioning. he said that if we'd just brought her in off the street and he'd never seen her before he would have no idea that there had ever been anything wrong at all! she would have no need for medication, surgery, or ongoing care.
here's her clean bill of health we'd been praying for 8 months for!
Phillipians 1:6 He who began a good work in you will be faithful to see it to completion.
she's home!!!
emma was dismissed to us in the care-by-parent room. we spent hours just looking at her, holding her, loving her. we took so many pictures of her and then realized they weren't capturing just how tiny she really was... so we took a picture of her next to jimmie's shoe!! what a little bundle she was! it was so awesome to see her in her own clothes, without any cords to hold her down. we didn't sleep a wink that night... we kept checking her breathing, counting her pulse, watching her sleep... but we sure didn't mind!
after being in the care-by-parent room we were able to bring emma home!!! as we were leaving the hospital the doctor looked at her and said, "This couldn't have happened on it's own - it's as if someone reached in and remade her heart!" we couldn't agree more! this baby who wasn't supposed to be home for several months was coming home with us! we hadn't thought at all about the possibility of bringing her home so soon. we didn't even have diapers for her yet, but we had each other!
after being in the care-by-parent room we were able to bring emma home!!! as we were leaving the hospital the doctor looked at her and said, "This couldn't have happened on it's own - it's as if someone reached in and remade her heart!" we couldn't agree more! this baby who wasn't supposed to be home for several months was coming home with us! we hadn't thought at all about the possibility of bringing her home so soon. we didn't even have diapers for her yet, but we had each other!
miracle, after miracle, after miracle...
emma ~ here she is at one day old...
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.
avoiding the inevitable...
the inevitable day finally came. i picked jimmie up from work to go to our regular monday doctor's appointment. we got there and she failed the nonstress test. then she was nonresponsive in the biophysical. our doctor came in for the familiar conversation. was this the week that we were going to deliver her or do we hope for another week? she was due in 2 days, but all the kids have been born late. she was still too small, so why not allow her to stay inside another week? but the doctor would hear nothing of it. he insisted that the increased risk of her being stillborn was absolutly not something he would tolerate another day. but i was begging him to not make me go have her that day. my obgyn who was supposed to be delivering her was out of town and wouldn't be back until wednesday. the cardiologist who was supposed to attend the delivery was on vacation and wouldn't be back until thursday. i was begging for him to retest later that day and see if she was responsive then. he firmly disagreed. he compromised and let me go home for one hour to get my things together and make a few calls. i was to be back at the hospital in one hour.
i got to the hospital and they got me all hooked up. guess who was now responsive??? you guessed it! she was now doing just fine. but our fetal specialist wasn't changing his mind. she had looked bad enough ealier that there was no point in delaying any longer. we were having her today.
he called our back-up obgyn to let him know we were delivering only to find out that he had just come off an overnight shift and hadn't slept in 48 hours, so he was going to refer me to the next doctor on call. i'd never even met this doctor! then minutes later i found out that emma's neonatologist that had been reviewing her files all this time was also out that night and another neonatologist would be taking care of her immediate care. so, months and months of planning and planning were resulting in my obgyn, backup obgyn, cardiologist, and neonatologist who were all familiar with her case weren't there for the terrifying event. i'll add in here that we also went through 3 nurses before she was actually born! looking back it was as if God was letting me know that once again He was in charge and He didn't need any help. so back to the story...
our new obgyn arrived at the hospital to meet me. he came in, i looked at him and said, 'do you know about my baby?' he said that he did. i said, 'tell me all about her'. he sat down next to me and told me all about her condition, what the plans were, and how he was going to handle it all. after i was satisifed with his answers he brought the neonatologist in to meet me. i did the same routine with her. i was reminded of all the facts: emma had multiple heart defects. for ebstein's alone we knew she would appear blue at birth, have difficulty breathing, difficulty with feedings, and may require immediate surgical attention. if that became necessary she would be life-flighted to st. louis for her first surgery. babies with ebstein's normally have a very large heart and their lungs lack blood. congestive heart failure is common. the operations necessary for this condition are very complex and involve recontruction of the doors of the tricuspid valve to make it functional and prevent the leak. all of that was for just one of her defects, and she had others! what we knew for sure was that she would be immediately admitted to the NICU, she would have most likely have an inability to get oxygenated blood back to her lungs, she would experience cyanosis. we would get through that and then go from there...
they began inducing me very slowly to see how she would tolerate things. she did well, so they gradually progressed things. pastor and cami were there with us and we went back and forth between joking, talking about everything under the sun, to praying and being scared. we played games, we read the bible, we laughed, we cried. it was such a long night. i remember at one point they went to grab a coffee or something and right before they left he read to me about jarius' daughter. i laid back in the dark room, trying to rest, all alone, and remember praying again that God would heal my baby.
as monday wound to a close and tuesday was dawning i realized she would be here soon. the activity of the room increased. her bed was getting warmed, the doctors were in full gowns, there was a quiet hub-bub about the room. there were no smiles, there were no excited voices waiting to welcome her into the world. i remember feeling dread as the time came to push. i didn't want to face what was ahead of us.
once everyone was set and ready to go she was here within minutes. she was incredibly tiny. she was blue. she didn't make a sound. they took her to the other side of the room and jimmie went with her. the quiet in the room was overwhelming. i softly said, 'she's not crying.' the doctor simply looked up at me and shook his head. jimmie was frozen by her side. he had the camera in his hand, but wasn't moving. seconds felt like hours as i waited to get a glimpse of her. doctors and nurses were talking to one another and moving very quickly but i didn't hear any of it. i was just waiting for a sound from her. i heard jimmie first... he turned his head my way and said, 'she's getting pink!'. i asked him to take a picture so i could see her. he did and brought the camera to me. the bottom half of her was blue and the top half was pink. she was getting oxygen! he ran back over to her. seconds later she cried out! i've never heard a more precious sound! jimmie ran back to me again. my doctor again looked up, this time looking to jimmie. he said, 'they aren't rushing her out of here, that's a good sign.'
moments later the neonatologist called jimmie over and said, 'look at your daughter!'. she picked her up and moved her to weigh her. she was 6 pounds! we had prayed for her to make it to 5 pounds, and here she was 6 pounds!
the doctor wrapped her and handed her to jimmie telling him that she was stable and he could hold her for just a couple minutes. we had prayed for a few seconds to kiss her before they took her away and here we were holding her!
pastor and cami came in and started taking pictures of us with her. those precious few minutes went by so quickly and they took her away. everyone went with her. i sat there alone. i'd never been in the delivery room without a baby before. i'd always had them in me or in my arms. i felt empty. what would this day hold? i began calling family and friends, letting them know she was here and asking them to pray.
i got to the hospital and they got me all hooked up. guess who was now responsive??? you guessed it! she was now doing just fine. but our fetal specialist wasn't changing his mind. she had looked bad enough ealier that there was no point in delaying any longer. we were having her today.
he called our back-up obgyn to let him know we were delivering only to find out that he had just come off an overnight shift and hadn't slept in 48 hours, so he was going to refer me to the next doctor on call. i'd never even met this doctor! then minutes later i found out that emma's neonatologist that had been reviewing her files all this time was also out that night and another neonatologist would be taking care of her immediate care. so, months and months of planning and planning were resulting in my obgyn, backup obgyn, cardiologist, and neonatologist who were all familiar with her case weren't there for the terrifying event. i'll add in here that we also went through 3 nurses before she was actually born! looking back it was as if God was letting me know that once again He was in charge and He didn't need any help. so back to the story...
our new obgyn arrived at the hospital to meet me. he came in, i looked at him and said, 'do you know about my baby?' he said that he did. i said, 'tell me all about her'. he sat down next to me and told me all about her condition, what the plans were, and how he was going to handle it all. after i was satisifed with his answers he brought the neonatologist in to meet me. i did the same routine with her. i was reminded of all the facts: emma had multiple heart defects. for ebstein's alone we knew she would appear blue at birth, have difficulty breathing, difficulty with feedings, and may require immediate surgical attention. if that became necessary she would be life-flighted to st. louis for her first surgery. babies with ebstein's normally have a very large heart and their lungs lack blood. congestive heart failure is common. the operations necessary for this condition are very complex and involve recontruction of the doors of the tricuspid valve to make it functional and prevent the leak. all of that was for just one of her defects, and she had others! what we knew for sure was that she would be immediately admitted to the NICU, she would have most likely have an inability to get oxygenated blood back to her lungs, she would experience cyanosis. we would get through that and then go from there...
they began inducing me very slowly to see how she would tolerate things. she did well, so they gradually progressed things. pastor and cami were there with us and we went back and forth between joking, talking about everything under the sun, to praying and being scared. we played games, we read the bible, we laughed, we cried. it was such a long night. i remember at one point they went to grab a coffee or something and right before they left he read to me about jarius' daughter. i laid back in the dark room, trying to rest, all alone, and remember praying again that God would heal my baby.
as monday wound to a close and tuesday was dawning i realized she would be here soon. the activity of the room increased. her bed was getting warmed, the doctors were in full gowns, there was a quiet hub-bub about the room. there were no smiles, there were no excited voices waiting to welcome her into the world. i remember feeling dread as the time came to push. i didn't want to face what was ahead of us.
once everyone was set and ready to go she was here within minutes. she was incredibly tiny. she was blue. she didn't make a sound. they took her to the other side of the room and jimmie went with her. the quiet in the room was overwhelming. i softly said, 'she's not crying.' the doctor simply looked up at me and shook his head. jimmie was frozen by her side. he had the camera in his hand, but wasn't moving. seconds felt like hours as i waited to get a glimpse of her. doctors and nurses were talking to one another and moving very quickly but i didn't hear any of it. i was just waiting for a sound from her. i heard jimmie first... he turned his head my way and said, 'she's getting pink!'. i asked him to take a picture so i could see her. he did and brought the camera to me. the bottom half of her was blue and the top half was pink. she was getting oxygen! he ran back over to her. seconds later she cried out! i've never heard a more precious sound! jimmie ran back to me again. my doctor again looked up, this time looking to jimmie. he said, 'they aren't rushing her out of here, that's a good sign.'
moments later the neonatologist called jimmie over and said, 'look at your daughter!'. she picked her up and moved her to weigh her. she was 6 pounds! we had prayed for her to make it to 5 pounds, and here she was 6 pounds!
the doctor wrapped her and handed her to jimmie telling him that she was stable and he could hold her for just a couple minutes. we had prayed for a few seconds to kiss her before they took her away and here we were holding her!
pastor and cami came in and started taking pictures of us with her. those precious few minutes went by so quickly and they took her away. everyone went with her. i sat there alone. i'd never been in the delivery room without a baby before. i'd always had them in me or in my arms. i felt empty. what would this day hold? i began calling family and friends, letting them know she was here and asking them to pray.
grieving, coping, surrender...
i remember everyone asking us how we were doing it. how were we still working? how were we staying happy for the other kids? how were we handling the stress of 2 and 3 doctor's appointments a week? how were we even functioning? the answer was, we weren't. well, i should clarify... jimmie was, but i wasn't.
sure i was going to work each day and to church twice a week. and i was cooking, cleaning, doing laundry, taking care of the kids, helping with homework, potty training, going on walks, swinging swings, and riding bikes. i was going through the motions. but inside i was a mess. i wouldn't say i'm a control freak (even though i totally am!), but i'll readily admit that i like things to be ordered and a plan in place. my only sense of control in all of this was that i surrounded myself with information. i knew the pages of the american heart association's website like the back of my hand. i would go to the cardiologist and keep up with the techs while they tested me and her. i knew what our treatment plans were. i knew what the risks were. i knew that the busier i was, the less i had time to think about the reality of what i was going to face. but i wasn't fooling myself. i knew i had no control over whether she lived or died.
i remember the night i finally allowed myself to grieve. it was about 2 weeks before she was born. the doctors had just reran all the same tests they'd initally ran at her diagnosis to be able to compare. i'd fully prepared myself to hear them say that they couldn't find anything wrong, that she was perfect, and that life was going to be perfect now. i was soooo wrong! all the defects were there, some even more severe than they had once thought. she weighed just 4 pounds, which was terribly small given that i was considered full term at that point. it was a day full of emotion, the world spinning way too fast, and that all too familar sense of no control.
i remember coming home after work that day, going upstairs to my room, and laying down. i remember thinking so selfishly to myself that i didn't want to have to live through this. i didn't want to have to watch her go through surgery after surgery. i didn't want to have to see scars all the way down her tiny chest. i didn't want to have to go through any of it. i just wanted it all to go away. i was sobbing into the pillow, when as clear as could be it came to me... the sooner i accept the fact that she was going to die the sooner i could get on with being a supportive and loving mom. she was going to die. each of my kids are going to die. jimmie is going to die. i am going to die. emma was going to die. whether it's when she's a minute old, a day old, a month old, a year old, or a hundred years old. she is going to die. and i don't have any control over that.
i grieved for my little girl that night. but it changed me. it changed my outlook. she wasn't just my baby. she was His baby. she was in His hands. He could heal her, or He could take her home. He could make this all go away, or He could simply hold me through it. i would wait. i would let Him have control.
Hebrews 11:1 Now faith is being sure of what we hope for and certain of what we do not see.
sure i was going to work each day and to church twice a week. and i was cooking, cleaning, doing laundry, taking care of the kids, helping with homework, potty training, going on walks, swinging swings, and riding bikes. i was going through the motions. but inside i was a mess. i wouldn't say i'm a control freak (even though i totally am!), but i'll readily admit that i like things to be ordered and a plan in place. my only sense of control in all of this was that i surrounded myself with information. i knew the pages of the american heart association's website like the back of my hand. i would go to the cardiologist and keep up with the techs while they tested me and her. i knew what our treatment plans were. i knew what the risks were. i knew that the busier i was, the less i had time to think about the reality of what i was going to face. but i wasn't fooling myself. i knew i had no control over whether she lived or died.
i remember the night i finally allowed myself to grieve. it was about 2 weeks before she was born. the doctors had just reran all the same tests they'd initally ran at her diagnosis to be able to compare. i'd fully prepared myself to hear them say that they couldn't find anything wrong, that she was perfect, and that life was going to be perfect now. i was soooo wrong! all the defects were there, some even more severe than they had once thought. she weighed just 4 pounds, which was terribly small given that i was considered full term at that point. it was a day full of emotion, the world spinning way too fast, and that all too familar sense of no control.
i remember coming home after work that day, going upstairs to my room, and laying down. i remember thinking so selfishly to myself that i didn't want to have to live through this. i didn't want to have to watch her go through surgery after surgery. i didn't want to have to see scars all the way down her tiny chest. i didn't want to have to go through any of it. i just wanted it all to go away. i was sobbing into the pillow, when as clear as could be it came to me... the sooner i accept the fact that she was going to die the sooner i could get on with being a supportive and loving mom. she was going to die. each of my kids are going to die. jimmie is going to die. i am going to die. emma was going to die. whether it's when she's a minute old, a day old, a month old, a year old, or a hundred years old. she is going to die. and i don't have any control over that.
i grieved for my little girl that night. but it changed me. it changed my outlook. she wasn't just my baby. she was His baby. she was in His hands. He could heal her, or He could take her home. He could make this all go away, or He could simply hold me through it. i would wait. i would let Him have control.
Hebrews 11:1 Now faith is being sure of what we hope for and certain of what we do not see.
pure beauty...
meet emma ~ her name means 'strength'
i'll never forget the day we first 'saw' our daughter!
we had gone multiple weeks in a row of her being borderline responsive to the weekly tests, making the decision each time to continue on with the pregnancy, giving her more time to grow. but then this particular week we went in and she was completly non-responsive to the nonstress test and followed that up by failing the biophysical profile. her growth was continuing to slow. so they told us to return in the morning and they would retest. if she failed again we would have no choice but to deliver her... 8 weeks premature.
we went in for the test, which lasts 30 minutes. there is a list of things she has to do in that 30 minutes or she's failed. we were down to just one minute left in the test before she did the last item on the list. even the nurses were cheering with us that she finally passed a test like she should! but i'm getting ahead of myself. while we were waiting for her to do that last item on the list we were able to 'play' with her. the nurse measured her feet for us... almost 2 inches long! then she measured her heart for us. we saw her stick her tongue out at as... silly, sweet, girl! and then she took a 3D picture of her for us!! we could see her thin little lips, her cheeks, her eyes, and her big brennan nose! : ) we couldn't stop staring at her! she was so beautiful.
we got to the car and sat together just crying over the picture. we both realized that this could very well be the only picture we may ever have of her without breathing tubes, feeding tubes, iv's, and wires all hooked up to her. there was no promise of her making it out of any of her surgeries. and as devastating as that thought was, all we could do was rejoice in the moment. we were looking at our daughter, our angel, our baby who so desperately needed a miracle, and she was perfect. absolutly perfect.
i'll never forget the day we first 'saw' our daughter!
we had gone multiple weeks in a row of her being borderline responsive to the weekly tests, making the decision each time to continue on with the pregnancy, giving her more time to grow. but then this particular week we went in and she was completly non-responsive to the nonstress test and followed that up by failing the biophysical profile. her growth was continuing to slow. so they told us to return in the morning and they would retest. if she failed again we would have no choice but to deliver her... 8 weeks premature.
we went in for the test, which lasts 30 minutes. there is a list of things she has to do in that 30 minutes or she's failed. we were down to just one minute left in the test before she did the last item on the list. even the nurses were cheering with us that she finally passed a test like she should! but i'm getting ahead of myself. while we were waiting for her to do that last item on the list we were able to 'play' with her. the nurse measured her feet for us... almost 2 inches long! then she measured her heart for us. we saw her stick her tongue out at as... silly, sweet, girl! and then she took a 3D picture of her for us!! we could see her thin little lips, her cheeks, her eyes, and her big brennan nose! : ) we couldn't stop staring at her! she was so beautiful.
we got to the car and sat together just crying over the picture. we both realized that this could very well be the only picture we may ever have of her without breathing tubes, feeding tubes, iv's, and wires all hooked up to her. there was no promise of her making it out of any of her surgeries. and as devastating as that thought was, all we could do was rejoice in the moment. we were looking at our daughter, our angel, our baby who so desperately needed a miracle, and she was perfect. absolutly perfect.
Jeremiah 1:5 Before I formed you in the womb I knew you, before you were born I set you apart.
impossible decisions...
our little girl faced so many life threatening issues. she was too small, growing at a much slower pace than normal. the amniotic fluid fluctuated significantly. when they would do non-stress tests each week she would be nonresponsive. her heart rate wouldn't increase to correspond to her movements. at times her heart rate would decrease with movement. so they would do a biophysical exam, which she would oftentimes fail. in those exams she would move around like she was supposed to, but she wouldn't always swallow and she wouldn't take breaths like they need to see. these are indicators of a baby that is in distress. our specialist would come in afterwards, sit down with us, and discuss what failing these tests could mean. they indicated that she could be in distress, there was an increased risk of being stillborn within the next few days. so we were faced with impossible decisions... do we induce and deliver now, knowing she would be premature? how do we choose to subject a 3 pound baby, whose heart is the size of a marble, to the possibility of open heart surgery? being born now would mean an even greater risk of death. or do we keep her inside, hoping and praying that she makes it another week and isn't stillborn? we always chose to go another week. another week to grow, another week to heal, another week to see a miracle.
Proverbs 3:5-6 Trust in the Lord with all your heart and lean not unto your own understanding. In all your ways acknowledge Him and He will make your paths straight.
Proverbs 3:5-6 Trust in the Lord with all your heart and lean not unto your own understanding. In all your ways acknowledge Him and He will make your paths straight.
the roller coaster...
life became a roller coaster of emotions. it took weeks to begin to admit to ourselves that this was a reality that we would have to face. it didn't feel real, it didn't feel right.
we went forward for prayer each week, believing God would heal our baby.
i've heard pastor say that there is a big difference between believing God CAN and knowing God WILL. pastor preaches about asking God for specifically what we need. i still remember our first year at church... june comes around and pastor begins praying for the weather on july 4th. he prays for a specific temperature, the mid-80's. he prays for a specific wind direction. he prayers for partly cloudy skies. he prays for no rain. i honestly thought he was a little nuts... who bothers God with such details? why not just ask God to bless the day and make it a success? but guess what??? july 4th comes around each year, and sure enough, each year we have perfect weather on the 4th for the outreach. this type of praying is modeled all across the church. we've watched for years as God answers prayer, performs miracles, and needs are met.
so as i mentioned before, we went forward for prayer each week and truly believed with all our heart that God was healing our baby. we would pray for each valve, for her atriums, for her ventricles, for the blood flow, for each aspect of her heart. we would fill with hope and confidence. it became the air that made it so we could breathe. and then every week we would go to the doctor for a checkup and see her heart come up on the screen - malformed, poorly functioning, broken... not healed. it's hard to explain, but it was the same take-your-breath-away, punch in the gut as the first time we saw it. we were truly expecting each week to go in and see our miracle on that screen. but every week it was a huge, overwhelming, shock to our system. she wasn't healed. she was very sick. she wasn't growing. she could die.
we went forward for prayer each week, believing God would heal our baby.
i've heard pastor say that there is a big difference between believing God CAN and knowing God WILL. pastor preaches about asking God for specifically what we need. i still remember our first year at church... june comes around and pastor begins praying for the weather on july 4th. he prays for a specific temperature, the mid-80's. he prays for a specific wind direction. he prayers for partly cloudy skies. he prays for no rain. i honestly thought he was a little nuts... who bothers God with such details? why not just ask God to bless the day and make it a success? but guess what??? july 4th comes around each year, and sure enough, each year we have perfect weather on the 4th for the outreach. this type of praying is modeled all across the church. we've watched for years as God answers prayer, performs miracles, and needs are met.
so as i mentioned before, we went forward for prayer each week and truly believed with all our heart that God was healing our baby. we would pray for each valve, for her atriums, for her ventricles, for the blood flow, for each aspect of her heart. we would fill with hope and confidence. it became the air that made it so we could breathe. and then every week we would go to the doctor for a checkup and see her heart come up on the screen - malformed, poorly functioning, broken... not healed. it's hard to explain, but it was the same take-your-breath-away, punch in the gut as the first time we saw it. we were truly expecting each week to go in and see our miracle on that screen. but every week it was a huge, overwhelming, shock to our system. she wasn't healed. she was very sick. she wasn't growing. she could die.
the diagnosis...
over the next few weeks we learned the details of our little girl's heart condition. there were numerous things wrong with her little heart.
the most serious condition was called 'Ebstein's Anomaly'. this is where the tricuspid valve is displaced lower into the right ventricle than it should be, causing numerous problems. to start with, the right atrium is too large and the right ventricle is too small to properly function.
because the valve is so low it doesn't close as it should with each heartbeat, causing blood to leak between the atrium and ventricle. this leakage is known as 'Tricuspid Regurgitation'.
additionally, the heart is working harder than it should causing what's known as 'Ventricle Hypertrophy' in both her right and left ventricles. this is where the walls of her heart are too thick.
they felt this thickening of the walls was most likely caused by 'Aortic Stenosis' or 'Coarctation of the Aorta'. this is where there is a narrowing somewhere in the aorta that causes the blood to not flow properly, causing the rest of the heart to work harder to get the blood where it needs to go.
she also had what's referred to as 'PFO' or 'Patent Foramen Ovale', which is an atrial septal defect. most ebstein's patients have an artial septal defect in the form of an extra hole in between the atriums. while she didn't have an extra hole, the hole that was present was large and prominent. the concern was that the piece of tissue that comes up to close the hole at birth wasn't big enough to entirely close the hole - creating, in essense, a second hole.
she had excess fluid around her heart, also a sign of her heart working too hard.
she had a very sick little heart that would require a series of surgeries to correct. we were tasked with the responsibility of determining a treatment plan to give her the best chances of survival. where do you even start???
the most serious condition was called 'Ebstein's Anomaly'. this is where the tricuspid valve is displaced lower into the right ventricle than it should be, causing numerous problems. to start with, the right atrium is too large and the right ventricle is too small to properly function.
because the valve is so low it doesn't close as it should with each heartbeat, causing blood to leak between the atrium and ventricle. this leakage is known as 'Tricuspid Regurgitation'.
additionally, the heart is working harder than it should causing what's known as 'Ventricle Hypertrophy' in both her right and left ventricles. this is where the walls of her heart are too thick.
they felt this thickening of the walls was most likely caused by 'Aortic Stenosis' or 'Coarctation of the Aorta'. this is where there is a narrowing somewhere in the aorta that causes the blood to not flow properly, causing the rest of the heart to work harder to get the blood where it needs to go.
she also had what's referred to as 'PFO' or 'Patent Foramen Ovale', which is an atrial septal defect. most ebstein's patients have an artial septal defect in the form of an extra hole in between the atriums. while she didn't have an extra hole, the hole that was present was large and prominent. the concern was that the piece of tissue that comes up to close the hole at birth wasn't big enough to entirely close the hole - creating, in essense, a second hole.
she had excess fluid around her heart, also a sign of her heart working too hard.
she had a very sick little heart that would require a series of surgeries to correct. we were tasked with the responsibility of determining a treatment plan to give her the best chances of survival. where do you even start???
in the beginning...
emma's story began back in november of 2007. we were pregnant with our 4th baby and so excited to find out how our family would be rounded out... would it be an even 2 girls, 2 boys? or would this new little one mix things up and give us 3 princesses and 1 prince? did we want to know, or were we going to keep it a delivery day surprise? oh, the anticipation!
we dropped the kiddos off at school, stopped by mickey-d's for a sweet tea to get this baby awake and moving for the ultrasound, and then headed across town to the doctor. we excitedly went in, bared my belly, and laid back to enjoy the show. but it all quickly came to a screaching halt.
the tech scanned the entire body and then went directly to it's chest. not being new to this process, i vaguely knew what i was looking at. there in front of us was a blinking butterfly on the screen... it was a little heart. but wait, it didn't look right. it wasn't symetric, one whole side was 'smooshy'. feeling all the blood leave my face, my arms, then my chest, i quickly asked, "what's wrong with the heart?". the tech didn't answer. i asked again, grabbing jimmie's hand. the tech kind of gave me a side-ways look and still didn't answer. so i asked again, this time sitting up a little. she removed the probe from my belly, looked at me, and said, "i've been doing this for years; you wouldn't know an abnormal heart if you were looking at it." the room began spinning as i said, "i'm looking at one."
in that moment i knew my world was about to change. the room was eerily quiet. there wasn't excitement or joy. there was a terrible gripping fear of the unknown. what was wrong with my baby???
the tech finished her scan and left the room. moments later the doctor arrived and told us that the tech had informed him of our concern. but he wasn't my doctor, he couldn't tell me anything, he'd call my doctor and tell him the diagnosis and i'd have to wait to hear it from him.
i was numb. i got up, left the office, walked to the car, and began to fall apart. i knew there was something terribly wrong but i didn't know what. jimmie kept saying everything was fine and not to worry, but i knew.
we went to my obgyn and as soon as we checked in they called us back... that was the first time in 3 pregnancies that i didn't have to wait at least 45 minutes to see him - another bad sign. he instantly came in the room, sat down, took a deep breath and said "we need to talk."
we dropped the kiddos off at school, stopped by mickey-d's for a sweet tea to get this baby awake and moving for the ultrasound, and then headed across town to the doctor. we excitedly went in, bared my belly, and laid back to enjoy the show. but it all quickly came to a screaching halt.
the tech scanned the entire body and then went directly to it's chest. not being new to this process, i vaguely knew what i was looking at. there in front of us was a blinking butterfly on the screen... it was a little heart. but wait, it didn't look right. it wasn't symetric, one whole side was 'smooshy'. feeling all the blood leave my face, my arms, then my chest, i quickly asked, "what's wrong with the heart?". the tech didn't answer. i asked again, grabbing jimmie's hand. the tech kind of gave me a side-ways look and still didn't answer. so i asked again, this time sitting up a little. she removed the probe from my belly, looked at me, and said, "i've been doing this for years; you wouldn't know an abnormal heart if you were looking at it." the room began spinning as i said, "i'm looking at one."
in that moment i knew my world was about to change. the room was eerily quiet. there wasn't excitement or joy. there was a terrible gripping fear of the unknown. what was wrong with my baby???
the tech finished her scan and left the room. moments later the doctor arrived and told us that the tech had informed him of our concern. but he wasn't my doctor, he couldn't tell me anything, he'd call my doctor and tell him the diagnosis and i'd have to wait to hear it from him.
i was numb. i got up, left the office, walked to the car, and began to fall apart. i knew there was something terribly wrong but i didn't know what. jimmie kept saying everything was fine and not to worry, but i knew.
we went to my obgyn and as soon as we checked in they called us back... that was the first time in 3 pregnancies that i didn't have to wait at least 45 minutes to see him - another bad sign. he instantly came in the room, sat down, took a deep breath and said "we need to talk."
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