to face the one year anniversary of Lynneah's stay in the NICU.
She was such a miserable little lady!
Her first birthday arrived and I was swept back to the insanity of everything we had packed into that Wednesday. (I still haven't written up anything on her birth :-( I need to get that done.) I was happy we had her on her special day, but just like last year, this year was PACKED with so much to do we didn't really do much.
Over the next few days I relived all the memories of her first few days home. I remembered as clear as if it was yesterday the feelings of KNOWING something was wrong, but what? I, again, lost sleep at night remembering all the times I woke up and found her not breathing. She's been sleeping in her crib in another room for quite a while now, but all of a sudden I felt uneasy about putting her to bed every night.
November 2nd
That morning emotional flood gates flew open as the memories of that day came flooding over me. One year ago we tag team voted in the morning so we could leave the sleeping kids in the van. As the day wore on my mind became more and more consumed with remembering. That night the images of our tiny little baby in the ER were just as vivid as ever. The palpable tension that rose when her oxygen level was only at 80%. The feeling that consumed me (and I'm assuming Stephen, although we've never really talked much about that time) as a hoard of medical professionals filled her examination area pushing us completely out. Her sad little cry because she was so desperately hungry. The crazy long list of tests that had been ordered. Some random Dr assuring us that she wouldn't remember the pain after I expressed concern over the spinal tap. Then being led back in to see the x-ray they had taken. They didn't say anything at first just let us look at it. It wasn't right, I knew that much, but what wasn't right? I didn't see it. They explained she had a diaphragmatic hernia. I'd never heard of such a thing, but knew enough human anatomy to know there was a hole where there wasn't supposed to be one. Hearing, "You won't be going home." All the uncomfortable feelings that came back remembering standing in the NICU hall while the nurses debated our "outside" baby. You would've thought we had a 3 headed alien the way the were talking. Finally they looked me straight in the eye and said, "We don't take "outside" babies. They shouldn't have accepted her. That Dr just didn't think when he said she could come here." What do you say to that??
We just stood there...staring.
My first thought was to apologize for intruding and leave, but my baby was slowly suffocating so I knew I couldn't do that. Finally they managed to put an isolation room together for us. Stephen stayed over night with her. I still wonder how I made myself leave her that night.
November 3rd
Her oxygen was maintaining as long as she kept her mouth closed and breathed through her nose. She'd been in such bad shape for so long that panting through an open mouth was a hard habit for her to break. The surgeon came to meet with us. All of my questions were answered with, "We won't know that till we get in there." Unsettling. There was discussion about anatomical development. She was born before we found it, so none of the in-utero developmental issues that are associated with diaphragmatic hernias ever crossed my mind till that moment. As the sun set that day the memories of her blessing swept over me. Our home teacher had had a very busy day, but was able to come down and help Stephen give her a pre-surgery blessing. I was shocked how strongly all the feelings of terror I had felt a year before came back. That was the first time in my life I'd been scared to death to hear a blessing. To this day I have NO idea what was said...I only know what wasn't said. It was my Dad's birthday. I never got a call off to him.
November 4th
I woke up that morning with the burning image of our baby girl's little bassinet being wheeled, surrounded by 5 nurses and doctors, down one hall while we just stood and watched. I hadn't moved. At some point Stephen wrapped his arm around me and started me down the hall we had to go through. I was wound up pretty tight. The images of her coming back in the room after the surgery, wow, those will forever be with me. Her arms were down at her sides. She NEVER had them anywhere but curled up by her chest. It was odd to see here in such a different position. The anesthesiologist pointed out that her lips were still pretty as ever and that the breathing tube thing hadn't messed them up. That thought hadn't even crossed my mind. I could hear our conversation as we checked her out and commented on her arms being down instead of curled up. Then the realization of how proportionally different she was settled on us. All of a sudden it made sense. I hadn't been able to figure out why none of her pants would stay on. She was a robust 8+ pound baby, yet even newborn size fell off. The very moment I looked down and saw the baby "frog belly" that had been missing came back. We hadn't noticed how barrel chested she was and abnormally skinny her abdomen was. We were both surprised. We purposely hadn't looked anything up about diaphragmatic hernias. Since she'd come through the surgery ok Stephen looked it up on his phone. I distinctly remember feeling like he was editing what he shared with me. After about 15 minutes he turned it off, put it down, and said, "We know enough now."
November 5th-11thish
These were long, rough days. She was moved into a pod with 3 other babies. Two of the babies had been born at 25 weeks gestation and the third was born at 27 weeks. Heartbreaking! I sat by her side wishing we were still in the quiet, dark isolation room. She was semi-content during the day time; but, would wail for hours every evening till the sun went down and/or they gave her Lorazapam. I tried to hold her, but it was useless. She wanted to eat and I couldn't do anything about it till she pooped. The lights were always on because the other 3 babies kept crashing and the nurses needed to be able to see what they were doing. She did much better in a darker environment. One nurse made a comment about her crying disturbing the preemies. I was annoyed. I didn't ask to be moved. Each time a new nurse came on and read her profile/history they questioned if we really had taken her home. I hadn't done any real research yet to know the severity of having a diaphragmatic hernia. So, I explained that we had indeed had her at home for 13 days before the weird things going on got so bad that I took her to her Pediatrician right away instead of waiting for the scheduled appointment. It was during one of these conversations with a friendly nurse that I was told, "Well, she belongs here in the NICU. The PICU wouldn't have been a good place for her. They're not used to newborns." My gratitude for hearing that comment hasn't lessened one bit in the last year. Acceptance? Validation? I don't know, but it was good for me to hear. We weren't intruders, she was a newborn, and she needed swift intervention. What an emotion filled week that was while I waited for her to poop so she could eat again. It was so hard sitting there all day while the little ones struggled. I still think about those other babies often. I was really unprepared for the wave of emotion associated with them that came. I listened to one get baptized while I was there. I nearly burst into tears when they asked that his sins be forgiven. SINS?!?! What sin could he possibly have committed in the few hours he had been fighting to live? His parents were so very young. I hope they're doing ok. I don't think there was any way he survived based on the conversations about his lung development. The other 25 week baby had parents in TOTAL denial about his precarious state. The Dad asked if he was breathing on his own. Even after the nurse explained that he was on the highest amount of support a baby can get he still didn't get it. I hope that one survived just because his poor parents wouldn't have seen his passing coming. The 27 week kiddo had esophageal perforations from intubation. (I don't know how to spell that) I was able to listen to his name and blessing given by someone from the local Ward. It was a stark contrast to the first one. I wonder about that little guy all the time too. His mother was mentally compromised and didn't seem to have a good support network. My heart aches for all of them. As we passed the one year on her post surgery week all the raw emotion and worry for her and the other babies came back fiercely. I was reeling but didn't know it.
About the time our Stake BBQ and Arianna's birthday party came around again I began to realize the emotional impact of the "1 year anniversay". While at this year's BBQ I was simultaneously reliving last year's. I'd driven over and met up with Stephen. I got to see the boys for a bit but was close enough to get back to the hospital if she pooped. I felt weird last year. I should've been tending to a bundled up newborn, but I wasn't. I hadn't known what to do with my arms. Sounds funny doesn't it? Then it was time for Arianna's birthday party. Last year all the boys were asked to dress up as Lost Boys. We were sent home just before the party and as I looked at the ragged, tattered group of urchins living in my house I knew achieving a "lost" look wouldn't be a problem. I'm not really very good at mothering or wife-ing, but that little glimpse of what would happen if I was gone was sobering. This year was so different. They looked presentable and Lynneah was doing well not just surviving.
After we'd gotten home with my COMPLETELY unrealistic expectations we did the best we could. She was doing alright, but not what I thought she should be doing. We had lots of visits to the Gastroenterologist, Pulmonologist, Physical Therapist, and Speech Pathologist (eating problems not talking problems). She improved...slowly. Then at 10 months she flourished. It was a huge month for her developmentally. We breathed a huge sigh of relief and enjoyed it the best we could. That's probably part of the reason I never saw the emotional semi-truck coming at me. I figured all was well. I've never really dealt with or sorted through all the emotions of that time. I couldn't. Life doesn't pause its self to allow for emotional exploration.
I'm feeling slightly normalish again.
It's surprising how emotionally spent you can feel just getting through the "anniversary" of an ordeal.
She was such a miserable little lady!
Her first birthday arrived and I was swept back to the insanity of everything we had packed into that Wednesday. (I still haven't written up anything on her birth :-( I need to get that done.) I was happy we had her on her special day, but just like last year, this year was PACKED with so much to do we didn't really do much.
Over the next few days I relived all the memories of her first few days home. I remembered as clear as if it was yesterday the feelings of KNOWING something was wrong, but what? I, again, lost sleep at night remembering all the times I woke up and found her not breathing. She's been sleeping in her crib in another room for quite a while now, but all of a sudden I felt uneasy about putting her to bed every night.
November 2nd
That morning emotional flood gates flew open as the memories of that day came flooding over me. One year ago we tag team voted in the morning so we could leave the sleeping kids in the van. As the day wore on my mind became more and more consumed with remembering. That night the images of our tiny little baby in the ER were just as vivid as ever. The palpable tension that rose when her oxygen level was only at 80%. The feeling that consumed me (and I'm assuming Stephen, although we've never really talked much about that time) as a hoard of medical professionals filled her examination area pushing us completely out. Her sad little cry because she was so desperately hungry. The crazy long list of tests that had been ordered. Some random Dr assuring us that she wouldn't remember the pain after I expressed concern over the spinal tap. Then being led back in to see the x-ray they had taken. They didn't say anything at first just let us look at it. It wasn't right, I knew that much, but what wasn't right? I didn't see it. They explained she had a diaphragmatic hernia. I'd never heard of such a thing, but knew enough human anatomy to know there was a hole where there wasn't supposed to be one. Hearing, "You won't be going home." All the uncomfortable feelings that came back remembering standing in the NICU hall while the nurses debated our "outside" baby. You would've thought we had a 3 headed alien the way the were talking. Finally they looked me straight in the eye and said, "We don't take "outside" babies. They shouldn't have accepted her. That Dr just didn't think when he said she could come here." What do you say to that??
We just stood there...staring.
My first thought was to apologize for intruding and leave, but my baby was slowly suffocating so I knew I couldn't do that. Finally they managed to put an isolation room together for us. Stephen stayed over night with her. I still wonder how I made myself leave her that night.
November 3rd
Her oxygen was maintaining as long as she kept her mouth closed and breathed through her nose. She'd been in such bad shape for so long that panting through an open mouth was a hard habit for her to break. The surgeon came to meet with us. All of my questions were answered with, "We won't know that till we get in there." Unsettling. There was discussion about anatomical development. She was born before we found it, so none of the in-utero developmental issues that are associated with diaphragmatic hernias ever crossed my mind till that moment. As the sun set that day the memories of her blessing swept over me. Our home teacher had had a very busy day, but was able to come down and help Stephen give her a pre-surgery blessing. I was shocked how strongly all the feelings of terror I had felt a year before came back. That was the first time in my life I'd been scared to death to hear a blessing. To this day I have NO idea what was said...I only know what wasn't said. It was my Dad's birthday. I never got a call off to him.
November 4th
I woke up that morning with the burning image of our baby girl's little bassinet being wheeled, surrounded by 5 nurses and doctors, down one hall while we just stood and watched. I hadn't moved. At some point Stephen wrapped his arm around me and started me down the hall we had to go through. I was wound up pretty tight. The images of her coming back in the room after the surgery, wow, those will forever be with me. Her arms were down at her sides. She NEVER had them anywhere but curled up by her chest. It was odd to see here in such a different position. The anesthesiologist pointed out that her lips were still pretty as ever and that the breathing tube thing hadn't messed them up. That thought hadn't even crossed my mind. I could hear our conversation as we checked her out and commented on her arms being down instead of curled up. Then the realization of how proportionally different she was settled on us. All of a sudden it made sense. I hadn't been able to figure out why none of her pants would stay on. She was a robust 8+ pound baby, yet even newborn size fell off. The very moment I looked down and saw the baby "frog belly" that had been missing came back. We hadn't noticed how barrel chested she was and abnormally skinny her abdomen was. We were both surprised. We purposely hadn't looked anything up about diaphragmatic hernias. Since she'd come through the surgery ok Stephen looked it up on his phone. I distinctly remember feeling like he was editing what he shared with me. After about 15 minutes he turned it off, put it down, and said, "We know enough now."
November 5th-11thish
These were long, rough days. She was moved into a pod with 3 other babies. Two of the babies had been born at 25 weeks gestation and the third was born at 27 weeks. Heartbreaking! I sat by her side wishing we were still in the quiet, dark isolation room. She was semi-content during the day time; but, would wail for hours every evening till the sun went down and/or they gave her Lorazapam. I tried to hold her, but it was useless. She wanted to eat and I couldn't do anything about it till she pooped. The lights were always on because the other 3 babies kept crashing and the nurses needed to be able to see what they were doing. She did much better in a darker environment. One nurse made a comment about her crying disturbing the preemies. I was annoyed. I didn't ask to be moved. Each time a new nurse came on and read her profile/history they questioned if we really had taken her home. I hadn't done any real research yet to know the severity of having a diaphragmatic hernia. So, I explained that we had indeed had her at home for 13 days before the weird things going on got so bad that I took her to her Pediatrician right away instead of waiting for the scheduled appointment. It was during one of these conversations with a friendly nurse that I was told, "Well, she belongs here in the NICU. The PICU wouldn't have been a good place for her. They're not used to newborns." My gratitude for hearing that comment hasn't lessened one bit in the last year. Acceptance? Validation? I don't know, but it was good for me to hear. We weren't intruders, she was a newborn, and she needed swift intervention. What an emotion filled week that was while I waited for her to poop so she could eat again. It was so hard sitting there all day while the little ones struggled. I still think about those other babies often. I was really unprepared for the wave of emotion associated with them that came. I listened to one get baptized while I was there. I nearly burst into tears when they asked that his sins be forgiven. SINS?!?! What sin could he possibly have committed in the few hours he had been fighting to live? His parents were so very young. I hope they're doing ok. I don't think there was any way he survived based on the conversations about his lung development. The other 25 week baby had parents in TOTAL denial about his precarious state. The Dad asked if he was breathing on his own. Even after the nurse explained that he was on the highest amount of support a baby can get he still didn't get it. I hope that one survived just because his poor parents wouldn't have seen his passing coming. The 27 week kiddo had esophageal perforations from intubation. (I don't know how to spell that) I was able to listen to his name and blessing given by someone from the local Ward. It was a stark contrast to the first one. I wonder about that little guy all the time too. His mother was mentally compromised and didn't seem to have a good support network. My heart aches for all of them. As we passed the one year on her post surgery week all the raw emotion and worry for her and the other babies came back fiercely. I was reeling but didn't know it.
About the time our Stake BBQ and Arianna's birthday party came around again I began to realize the emotional impact of the "1 year anniversay". While at this year's BBQ I was simultaneously reliving last year's. I'd driven over and met up with Stephen. I got to see the boys for a bit but was close enough to get back to the hospital if she pooped. I felt weird last year. I should've been tending to a bundled up newborn, but I wasn't. I hadn't known what to do with my arms. Sounds funny doesn't it? Then it was time for Arianna's birthday party. Last year all the boys were asked to dress up as Lost Boys. We were sent home just before the party and as I looked at the ragged, tattered group of urchins living in my house I knew achieving a "lost" look wouldn't be a problem. I'm not really very good at mothering or wife-ing, but that little glimpse of what would happen if I was gone was sobering. This year was so different. They looked presentable and Lynneah was doing well not just surviving.
After we'd gotten home with my COMPLETELY unrealistic expectations we did the best we could. She was doing alright, but not what I thought she should be doing. We had lots of visits to the Gastroenterologist, Pulmonologist, Physical Therapist, and Speech Pathologist (eating problems not talking problems). She improved...slowly. Then at 10 months she flourished. It was a huge month for her developmentally. We breathed a huge sigh of relief and enjoyed it the best we could. That's probably part of the reason I never saw the emotional semi-truck coming at me. I figured all was well. I've never really dealt with or sorted through all the emotions of that time. I couldn't. Life doesn't pause its self to allow for emotional exploration.
I'm feeling slightly normalish again.
It's surprising how emotionally spent you can feel just getting through the "anniversary" of an ordeal.
SEE!!!
I told ya she was doing well!
I told ya she was doing well!
5 comments:
It is so wonderful to have witnessed the changes since that little light switch was flipped on. Such a little miracle, she is. And as I have said many times before, her big brothers better watch out, she will take them out before too many year . . and with a new little sister to help her, it won't be pretty!
I remember seeing her the first time after that 10 month mark. I was so happy to see how well she was doing. We have been so grateful to have her in our family. The girls love having a girl cousin in Tucson, and she helps Rob come out of his crusty shell every time she looks up at him and wants to play. I love watching him play with her...he plays with little girls so differently then he plays with the boys. I'm glad you had a chance to finally process a bit of those emotions. I understand the delay, as I usually carry things inside for A LONG time before allowing myself to work them out. give her a big hug and kiss for us!
Thanks for sharing your thoughts, Mariah! It's wonderful to see how great she really is doing! She's a miracle!!
All I can say is, WOW.
I think it's a blessing that we don't have time to emotionally process some things or we would literally fall apart. Some things happen both the positive and the negative so we can see God's hands in our lives. He definitely played a role in this experience. Thanks for sharing such deep feelings.
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