6:05am
Thursday night after our care conference when things settled down a bit and Josh & I were finally able to sit down and relax, we both fell asleep sitting in the living room at about 11pm. I was supposed to have been pumping, so around 1am, this woke me up. After doing this, I started to hear rain. At first the rain sounded fairly heavy, but then it tapered off. I went out front and sat on our front porch just watching the peaceful rain, and I actually took some pictures when there were only light sprinkles remaining bc it was just so peaceful. When I was still outside, just after 2am, my phone rang. I had it with me bc I had been getting ready to call Avelyn's night nurse to see how she was doing, as I had done in previous nights.--But instead Avelyn's night doctor was calling me. She reported Avelyn's blood pressure had been dropping; when it had done this two nights ago when Josh was there, one fluid bolus (salt water) was able to bring it back up; I believe this helps bc it gives the heart more fluid to pump. But Thursday night they had tried 3 of these with little to no results.--They were starting a 4th and then were also going to give hydrocortisone (a steroid) to try to help, as well. After getting ahold of someone to come sit at our home with the girls (thank u!), we left for the hospital. We called Ave's nurse on our way there and they said this had finally helped to bring up her blood pressure so she was stable. But as u might expect, bc of all the fluid they had to give her, she was even more significantly swollen; she couldn't even keep her little tongue in her mouth bc it was so swollen.
When we got there, the next few hours consisted of trying to keep her stable. They kept increasing her settings on the vent to make this happen. Finally by around 8am, her numbers looked more stable (although still not as good as they had been the days prior), but they said they had maxed out the settings and couldn't go any higher. This is when our little fighter, our overcomer, held her own. She remained stable for the next several hours until more of our family could get into town in the late afternoon.--We were very thankful for this bc around 11am, she started showing signs on her skin that her little heart wouldn't last much longer, but she kept fighting. But her precious body had already endured so much; besides her heart showing signs, she continued to become more swollen with little to no wet diapers and she just looked so uncomfortable. She finally left us at 6:21 pm, to go meet our Lord and Savior Jesus Christ. We prayed so hard for a miracle, as many of u have been, but God has other plans for her. This makes us so sad and we have cried so many tears, but we feel her earthly body had had enough. She was ready to go and God was awaiting her with open and loving arms, welcoming her into His kingdom.
I awoke again this morning (Friday night/Saturday morning), needing to pump, to another peaceful rain. I will never forget these moments. I feel she is showing me that even in the rain, "My Sunshine" is shining through...and it's so peaceful to feel this and to know this. I sang this song to her hundreds of times..."You are my sunshine, my only sunshine. You make me happy when skies are gray. You'll never know dear how much I love you. Please don't take my sunshine away..." We love you sweet Avelyn.
Thursday night after our care conference when things settled down a bit and Josh & I were finally able to sit down and relax, we both fell asleep sitting in the living room at about 11pm. I was supposed to have been pumping, so around 1am, this woke me up. After doing this, I started to hear rain. At first the rain sounded fairly heavy, but then it tapered off. I went out front and sat on our front porch just watching the peaceful rain, and I actually took some pictures when there were only light sprinkles remaining bc it was just so peaceful. When I was still outside, just after 2am, my phone rang. I had it with me bc I had been getting ready to call Avelyn's night nurse to see how she was doing, as I had done in previous nights.--But instead Avelyn's night doctor was calling me. She reported Avelyn's blood pressure had been dropping; when it had done this two nights ago when Josh was there, one fluid bolus (salt water) was able to bring it back up; I believe this helps bc it gives the heart more fluid to pump. But Thursday night they had tried 3 of these with little to no results.--They were starting a 4th and then were also going to give hydrocortisone (a steroid) to try to help, as well. After getting ahold of someone to come sit at our home with the girls (thank u!), we left for the hospital. We called Ave's nurse on our way there and they said this had finally helped to bring up her blood pressure so she was stable. But as u might expect, bc of all the fluid they had to give her, she was even more significantly swollen; she couldn't even keep her little tongue in her mouth bc it was so swollen.
When we got there, the next few hours consisted of trying to keep her stable. They kept increasing her settings on the vent to make this happen. Finally by around 8am, her numbers looked more stable (although still not as good as they had been the days prior), but they said they had maxed out the settings and couldn't go any higher. This is when our little fighter, our overcomer, held her own. She remained stable for the next several hours until more of our family could get into town in the late afternoon.--We were very thankful for this bc around 11am, she started showing signs on her skin that her little heart wouldn't last much longer, but she kept fighting. But her precious body had already endured so much; besides her heart showing signs, she continued to become more swollen with little to no wet diapers and she just looked so uncomfortable. She finally left us at 6:21 pm, to go meet our Lord and Savior Jesus Christ. We prayed so hard for a miracle, as many of u have been, but God has other plans for her. This makes us so sad and we have cried so many tears, but we feel her earthly body had had enough. She was ready to go and God was awaiting her with open and loving arms, welcoming her into His kingdom.
I awoke again this morning (Friday night/Saturday morning), needing to pump, to another peaceful rain. I will never forget these moments. I feel she is showing me that even in the rain, "My Sunshine" is shining through...and it's so peaceful to feel this and to know this. I sang this song to her hundreds of times..."You are my sunshine, my only sunshine. You make me happy when skies are gray. You'll never know dear how much I love you. Please don't take my sunshine away..." We love you sweet Avelyn.
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