I can't sleep, so I figured I'd get up and blog a bit.
In my previous posts I forgot to document one of my favorite memories of Eirion and one I definitely don't want to forget.
Eirion most definitely knew who her mommy was and her favorite place to be was in my arms. I have mentioned before that she was quite a fussy baby, but she loved to be held by me and when I held her she would stop crying.
When other people would hold her and she would hear my voice, most of the time she would cry until I held her. When my sister would hold her she would tell me not to talk because she knew if Eirion heard my voice, she'd cry. Sometimes, if I was particularly busy it was kind of a nuisance, but most of the time as a mother --it was gratifying. It's nice to know that your baby knows who you are and loves to be held by you.
She loved to be sung to and we sang to her a lot. Layne's song for Eirion was Caledonia. My song consisted of whatever primary or nursery rhyme song that came to mind at the moment. Kyrie also had a song. It was Beth by Kiss. Now lest you think we are Kiss fans(we are not), Kyrie heard that song on a TV show, liked it, and put it on her iPod. I know it sounds strange, but Eirion loved that song and when Kyrie sang it to her she would stop crying. It was like magic.
One time I came home after taking the younger boys to school and Devon was singing a song from Tangled to her. She had been crying, he started to sing to her and she stopped. It's pretty touching to see your 14 year-old son singing so lovingly to his baby sister.
Zak, Micah and Rowan would also sing to her. We had a baby monitor and one time she was in our bedroom on the bed and Micah and Rowan were in there with her. I was in the kitchen and soon I heard them singing primary songs to her.
As I think of new memories, I might add them from time to time. After we had Jared(#7) and thought we were done, I was fine with that. When we found out we were expecting Eirion, after the initial shock wore off, I was excited to have another baby in the house. Because she was here so briefly, sometimes I feel kind of like I've been robbed. I'm not angry or bitter at the Lord, I just don't feel like I got my fill of baby time. I keenly feel the emptiness of my arms without her and sometimes it makes me really sad. Sometimes I still get to hold her in my dreams at night.
I hope people with new babies don't shy away from me for fear that they might hurt my feelings. I am genuinely happy for other people when they have a new, healthy baby.
I look forward to the day when my children start having their own babies. Hopefully, they'll live close and I can love on grandbabies in the near future(but not too near). :)
Sunday, October 30, 2011
Sunday, October 23, 2011
Our Angel
July passed and suddenly it was August and we were getting the kids ready to start another school year. We were also preparing Kyrie leave the nest and start her first semester at BYU. Our days were filled with school supply shopping, meet the teacher, schedule changes and packing Kyrie's things. School started August 11.
When Layne returned from England, he brought each of the kids a gift. Eirion's gift was a sheep. It is adorable, with big purple eyes and this sheep became Eiron's confidant. When she would lay on our bed, she would look at this little sheep and tell it all of her woes. She "talked" to this little sheep a lot. We put it in her bassinet. She seemed to like it.
On August 14, Eirion didn't seem to be feeling well. She had had a bad night and there was a little hitch in her breathing. I didn't worry about it, because that had happened off and on since birth. I told Layne that I didn't think we should take her to church that day.
Layne went to church, then he came home and I went. When church ended, I took Devon and Zak with me and while Kyrie followed in another car with the other kids.
Zak and Devon made it into the house before me and as I was getting out of the car, they both yelled at me to hurry and get in the house. I ran in and Layne had Eirion on the floor and was on the phone with the 911 operator.
I dropped down and started doing everything I had been taught to try and get her breathing. We started CPR. The paramedics, police and ambulance came just a couple of minutes later. Kyrie took all the kids into another room so the paramedics could work.
Layne said he had been holding her and she was fussy and arched her back, so he put her up on his shoulder and started patting her back. He was feeling sleepy while he held her, and he said she relaxed, took 2 really good deep breaths and then just stopped. He ran in to get the suction machine and then called 911.
The paramedics worked with her for a bit, then we all loaded into the ambulance and headed to the hospital. Layne stayed and talked to the kids for just a minute, then followed.
When we got to the hospital, they had a medical team waiting. They worked on her for about an hour and told me there wasn't a whole lot of hope. When Layne got there and they told him the news, he told them to go ahead and stop. Our little princess had returned to her Father in Heaven.
Even though we always knew losing her was a possibility, the reality is so much worse and so much harder than you imagine.
The most common reason that babies with Trisomy 13 pass away, is that for whatever reason, they just stop breathing. Even knowing this, after she passed away, I started to feel a lot of guilt. I wondered if I had done something wrong, if I should have taken her to the doctor that morning, if I had missed something, if this in some way was my fault. In our faith, we believe in priesthood blessings. I had three of them. Two from my husband and one from my dad. In them I was told that it was not my fault, that I had done nothing wrong and she only needed to be here for a short time. In the week after she passed away, we received an immense amount of peace and comfort--that this was all a part of the plan. We believe that because of all the love and prayers of others and ourselves, her life was extended in the first place. The Lord let us keep her for a while, but then he needed her back.
I'm grateful that she passed away the way she did--in her daddy's loving arms. Not on an operating table or some other horrible way.
Suddenly we were planning a funeral. We had a tremendous outpouring of love and support from all our friends and family. I can never thank everyone enough for all the kindness, help and love we received. The funeral was very spiritual and beautiful. My mom had crocheted her a beautiful, lacy, white dress for her blessing. She was still small enough to fit into it, so that is what we chose to have her buried in. Our beautiful, pure, white angel.
We all adored Eirion and I still miss her every single day. I suppose I probably always will and that's o.k.
People always say that Eirion was so lucky and blessed to come to our family. We feel like we were the ones who were blessed to have her with us. Our lives have been forever changed and blessed because of her. Our children will never look at special needs kids the same. They will see beyond the damaged body and mind and into the spirit. We will have more compassion toward others.
Eirion was truly a blessing to us. Words cannot express how much we love her. She was a little, tiny girl with a great big spirit and now she is our little angel in heaven watching over us. I know we will see her again and are striving to be worthy to be with her forever.
Our Little Princess
Eirion Lorraine Gneiting
March 4, 2011-August 14, 2011.
When Layne returned from England, he brought each of the kids a gift. Eirion's gift was a sheep. It is adorable, with big purple eyes and this sheep became Eiron's confidant. When she would lay on our bed, she would look at this little sheep and tell it all of her woes. She "talked" to this little sheep a lot. We put it in her bassinet. She seemed to like it.
On August 14, Eirion didn't seem to be feeling well. She had had a bad night and there was a little hitch in her breathing. I didn't worry about it, because that had happened off and on since birth. I told Layne that I didn't think we should take her to church that day.
Layne went to church, then he came home and I went. When church ended, I took Devon and Zak with me and while Kyrie followed in another car with the other kids.
Zak and Devon made it into the house before me and as I was getting out of the car, they both yelled at me to hurry and get in the house. I ran in and Layne had Eirion on the floor and was on the phone with the 911 operator.
I dropped down and started doing everything I had been taught to try and get her breathing. We started CPR. The paramedics, police and ambulance came just a couple of minutes later. Kyrie took all the kids into another room so the paramedics could work.
Layne said he had been holding her and she was fussy and arched her back, so he put her up on his shoulder and started patting her back. He was feeling sleepy while he held her, and he said she relaxed, took 2 really good deep breaths and then just stopped. He ran in to get the suction machine and then called 911.
The paramedics worked with her for a bit, then we all loaded into the ambulance and headed to the hospital. Layne stayed and talked to the kids for just a minute, then followed.
When we got to the hospital, they had a medical team waiting. They worked on her for about an hour and told me there wasn't a whole lot of hope. When Layne got there and they told him the news, he told them to go ahead and stop. Our little princess had returned to her Father in Heaven.
Even though we always knew losing her was a possibility, the reality is so much worse and so much harder than you imagine.
The most common reason that babies with Trisomy 13 pass away, is that for whatever reason, they just stop breathing. Even knowing this, after she passed away, I started to feel a lot of guilt. I wondered if I had done something wrong, if I should have taken her to the doctor that morning, if I had missed something, if this in some way was my fault. In our faith, we believe in priesthood blessings. I had three of them. Two from my husband and one from my dad. In them I was told that it was not my fault, that I had done nothing wrong and she only needed to be here for a short time. In the week after she passed away, we received an immense amount of peace and comfort--that this was all a part of the plan. We believe that because of all the love and prayers of others and ourselves, her life was extended in the first place. The Lord let us keep her for a while, but then he needed her back.
I'm grateful that she passed away the way she did--in her daddy's loving arms. Not on an operating table or some other horrible way.
Suddenly we were planning a funeral. We had a tremendous outpouring of love and support from all our friends and family. I can never thank everyone enough for all the kindness, help and love we received. The funeral was very spiritual and beautiful. My mom had crocheted her a beautiful, lacy, white dress for her blessing. She was still small enough to fit into it, so that is what we chose to have her buried in. Our beautiful, pure, white angel.
We all adored Eirion and I still miss her every single day. I suppose I probably always will and that's o.k.
People always say that Eirion was so lucky and blessed to come to our family. We feel like we were the ones who were blessed to have her with us. Our lives have been forever changed and blessed because of her. Our children will never look at special needs kids the same. They will see beyond the damaged body and mind and into the spirit. We will have more compassion toward others.
Eirion was truly a blessing to us. Words cannot express how much we love her. She was a little, tiny girl with a great big spirit and now she is our little angel in heaven watching over us. I know we will see her again and are striving to be worthy to be with her forever.
Our Little Princess
Eirion Lorraine Gneiting
March 4, 2011-August 14, 2011.
The Summer of Eirion
As I said before, we were absolutely thrilled to finally have our little girl home. It was mid-April.
We got into a routine at home. Layne still got up and got the kids breakfast while I tended to Eirion and tried to catch a few extra minutes of sleep. She didn't sleep much at night and cried a lot so Layne spent many nights on the couch just so he could sleep and be ready for the next day. She did still sleep a lot during the day sometimes, so I was usually able to get a shower, but there were many, many days that I spent the entire day just holding her and getting nothing else done. We realized that it was o.k. to not get everything done during the day that we wanted.
For about the first month, we had a nurse come periodically to our house to check on her, weigh her and give us any help we may need. It was so exciting to see her continually gain weight. Her cheeks filled out and her legs got chubby.
We blessed her in church at the beginning of May. Layne gave her a beautiful blessing. He blessed her that she would be a light, there would be a balm of healing, that her spirit would be unfettered by her body, and other wonderful things. It was a wonderful day.
Layne was getting ready during this time to go to England. He was directing the Study Abroad program in London for ASU and when you do that, it is a 2-year commitment. He was in his second year. Our son, Devon, had worked really hard to earn money so he could go also. This was planned before we had Eirion and knew of her challenges. He did offer to stay home, more than once, because of Eirion. But Devon had worked so hard so he could go that I didn't feel it would be fair to him and I didn't want him to resent Eirion, so I told him he needed to go. Eirion was doing really well and I was confident in my ability to take care of her. That's not to say it was easy, because being without your husband for 6 weeks with lots of kids and a special needs child was not easy, but we did it.
My parents came to visit in May. One night before bed, my mom noticed that her Mic-Key button seemed loose. I didn't think too much about and just thought she was worrying too much. Well, Eirion woke up at 4 a.m. screaming and when I picked her up, it came out. The Mic-Key button is held in place by a tiny balloon that is filled with water. If the balloon pops, for whatever reason, the button will come out. I freaked! It scared me so bad. I did have a replacement, so I got it and quickly read how to put the new one in. It seemed to work. Luckily, we had an appointment with her surgeon that morning. He checked it and said I did just fine. That wasn't the first time it came out. We had to replace it 3 or 4 more times.
At the beginning of June, Dani left and flew to Idaho to work for Layne's Mom. I still had Kyrie, though, and Kyrie had a driver's license which was more help than I can even say. It was wonderful to know that I had her to help me.
We rejoiced in every little milestone she reached--especially because we were told that she would never reach most of the milestones she reached.
She would track us with her eyes or track the toys that hung on her carseat, she would lift her head, she would listen when we would talk and she loved to suck on her fingers. She loved her fingers and they were always near her face or in her mouth. She could also suck and loved to suck on our pinky fingers.
Probably the most exciting milestone was when she would "talk". One day I was talking to her and she started to "talk" back. She would gurgle and make happy sounds when we would talk to her. I loved it and got a thrill every time she did it.
We didn't leave home a whole lot during the summer, but the boys swam in our pool a lot and I tried to keep them busy with various activities. They probably played on the Wii way too much, but sometimes that's the way it goes.
Layne got home the first part of July. Also around this time, we had an appointment with the plastic surgeon who was going to repair her cleft lip and palate. He asked us if she was taking any food orally. I said no, because of her cleft lip and palate. He said they have special bottles made just for that, and if she passed a swallow test she could start taking a little bit orally. He was irritated, because the swallow test should have been done in the hospital, but because she had T-13, they hadn't done it.
She passed her swallow test with flying colors, so we were able to start giving her a little orally. Again, we were thrilled and she liked being able to taste something.
He also referred us to a pediatric cranio-facial specialist in Phoenix to help prepare her for surgery. She had us tape Eirion's face in various ways so we could get the best possible results when it was time for her surgery. She hated it, but we wanted to do whatever we could to get the best results. We also met with a feeding specialist who told us that we should increase how much she was taking orally. The surgery was tentatively scheduled to take place in October.
We got into a routine at home. Layne still got up and got the kids breakfast while I tended to Eirion and tried to catch a few extra minutes of sleep. She didn't sleep much at night and cried a lot so Layne spent many nights on the couch just so he could sleep and be ready for the next day. She did still sleep a lot during the day sometimes, so I was usually able to get a shower, but there were many, many days that I spent the entire day just holding her and getting nothing else done. We realized that it was o.k. to not get everything done during the day that we wanted.
For about the first month, we had a nurse come periodically to our house to check on her, weigh her and give us any help we may need. It was so exciting to see her continually gain weight. Her cheeks filled out and her legs got chubby.
We blessed her in church at the beginning of May. Layne gave her a beautiful blessing. He blessed her that she would be a light, there would be a balm of healing, that her spirit would be unfettered by her body, and other wonderful things. It was a wonderful day.
Layne was getting ready during this time to go to England. He was directing the Study Abroad program in London for ASU and when you do that, it is a 2-year commitment. He was in his second year. Our son, Devon, had worked really hard to earn money so he could go also. This was planned before we had Eirion and knew of her challenges. He did offer to stay home, more than once, because of Eirion. But Devon had worked so hard so he could go that I didn't feel it would be fair to him and I didn't want him to resent Eirion, so I told him he needed to go. Eirion was doing really well and I was confident in my ability to take care of her. That's not to say it was easy, because being without your husband for 6 weeks with lots of kids and a special needs child was not easy, but we did it.
My parents came to visit in May. One night before bed, my mom noticed that her Mic-Key button seemed loose. I didn't think too much about and just thought she was worrying too much. Well, Eirion woke up at 4 a.m. screaming and when I picked her up, it came out. The Mic-Key button is held in place by a tiny balloon that is filled with water. If the balloon pops, for whatever reason, the button will come out. I freaked! It scared me so bad. I did have a replacement, so I got it and quickly read how to put the new one in. It seemed to work. Luckily, we had an appointment with her surgeon that morning. He checked it and said I did just fine. That wasn't the first time it came out. We had to replace it 3 or 4 more times.
At the beginning of June, Dani left and flew to Idaho to work for Layne's Mom. I still had Kyrie, though, and Kyrie had a driver's license which was more help than I can even say. It was wonderful to know that I had her to help me.
We rejoiced in every little milestone she reached--especially because we were told that she would never reach most of the milestones she reached.
She would track us with her eyes or track the toys that hung on her carseat, she would lift her head, she would listen when we would talk and she loved to suck on her fingers. She loved her fingers and they were always near her face or in her mouth. She could also suck and loved to suck on our pinky fingers.
Probably the most exciting milestone was when she would "talk". One day I was talking to her and she started to "talk" back. She would gurgle and make happy sounds when we would talk to her. I loved it and got a thrill every time she did it.
We didn't leave home a whole lot during the summer, but the boys swam in our pool a lot and I tried to keep them busy with various activities. They probably played on the Wii way too much, but sometimes that's the way it goes.
Layne got home the first part of July. Also around this time, we had an appointment with the plastic surgeon who was going to repair her cleft lip and palate. He asked us if she was taking any food orally. I said no, because of her cleft lip and palate. He said they have special bottles made just for that, and if she passed a swallow test she could start taking a little bit orally. He was irritated, because the swallow test should have been done in the hospital, but because she had T-13, they hadn't done it.
She passed her swallow test with flying colors, so we were able to start giving her a little orally. Again, we were thrilled and she liked being able to taste something.
He also referred us to a pediatric cranio-facial specialist in Phoenix to help prepare her for surgery. She had us tape Eirion's face in various ways so we could get the best possible results when it was time for her surgery. She hated it, but we wanted to do whatever we could to get the best results. We also met with a feeding specialist who told us that we should increase how much she was taking orally. The surgery was tentatively scheduled to take place in October.
Tuesday, October 11, 2011
The Story of Eirion Part 5: Finally home!
As I said earlier, after Eirion received a blood transfusion she continued to get better. She improved rapidly. She stopped spitting up and didn't have any apnea episodes. After her surgery and after she started feeling better Eirion discovered she had a voice. She also discovered how to use it and she practiced using it often and loudly. She cried. A Lot. And that continued up until she passed away. She definitely let us know she was around. We didn't mind too much, though, because we were so happy to still have her with us. We counted every day as a blessing.
We were finally almost ready to bring her home. She just needed to heal a bit more from her surgery and gain a little more weight.
We were scheduled to bring her home on Tuesday, so on Monday her medical equipment was delivered to the hospital and we were trained on how to use it. We had a pump for her Mic-Key button, an apnea monitor and a suction machine. Kind of overwhelming at first, but not very hard to learn to use.
I remember being so excited to finally have her home. She would be able to finally be a part of our daily everyday life and be able to bond with her siblings. I was so happy to finally be able to hold her all the time and not have to leave her in the hospital. Also, I felt, as I'm sure all mothers do, that although we had wonderful nurses in the hospital, no one could love her as much as I did.
We went in on Tuesday morning with the car seat. She had to have a car seat test first. Preemies sometimes have a hard time because if their head falls forward in the car seat they can't breathe and then you have to take them home in a car bed. She passed with flying colors and didn't mind too much being in her car seat. The doctor came in to do his last check-up and found out from the nurse that Eirion was having a hard time regulating her body temperature. She was cold. I told him how warm my house is and assured him that I could keep her warm, but he didn't feel it was a good idea to send her home yet if she couldn't regulate her body temperature. We were so sad and the kids were so sad that she didn't come home.
But remember Nancy the NICU guru? She came to see Eirion and Kristi told her what was going on, so Nancy went to work and decided to get her warm. She put her in a long sleeve onesie, a sleeper and a warm, thick, snuggly thing to keep her warm. It worked! She stayed warm. So the date was sent for the next day.
The next day we went and if she was just put in a sleeper, she was having a hard time regulating her temperature, but if she had on layers she stayed warm. The doctor seemed to think it was a side effect of T13 and asked if I felt comfortable taking her home. I said yes and that I was comfortable with my ability to keep her warm. He said he would release her then.
Right before we left, Kristi came in to say goodbye. She cried and so did I. You become attached to those special nurses who love your baby when you're not there. The doctor had signed the necessary papers and home we went finally! She was a month and a half old.
Having her home was wonderful and the kids were thrilled. The younger ones were happy that they could see her and touch her anytime they wanted. Jared loved peeking over the side of the bassinet. A few days after she came home I was sitting by her bassinet and noticed a little orange chee-toh smudge on the side. Apparently he wanted to show Eirion the joy of Chee-toh's.
At times during her hospital stay we weren't sure if she would ever come home so we were so grateful. At first we had her bassinet in the living room during the day and our bedroom at night. I was nervous and wanted her to be with us as much as possible so I could make sure she was o.k. She slept a lot at first. My mom and one of her friends had made a lot of hats for her and she loved those hats. Sometimes if she was crying and I put a hat on her, she'd stop and go to sleep. She loved to snuggle and was probably my snuggliest, cuddliest baby and I loved cuddling her and feeling her sweet little body snuggled up to my shoulder. She was our little princess and I dressed her accordingly. After 5 boys, I had a great time putting her in little teeny, tiny, very girly outfits, most of which were gifts from wonderful friends and family.
After about 3 weeks with no apnea episodes, I stopped using the apnea monitor. She never needed it. I also started putting her in our bedroom when she slept because it was quieter in there. But I bought a baby monitor with 2 receivers and I put one in the kitchen and one in the living room. Even with the monitors, I still checked on her about every 10 minutes when she was sleeping. I knew the leading cause of death for babies with T13 is that for no explainable reason, they just stop breathing, so I checked on her a lot.
We felt so blessed to finally have her home.
Next: The Summer of Eirion
We were finally almost ready to bring her home. She just needed to heal a bit more from her surgery and gain a little more weight.
We were scheduled to bring her home on Tuesday, so on Monday her medical equipment was delivered to the hospital and we were trained on how to use it. We had a pump for her Mic-Key button, an apnea monitor and a suction machine. Kind of overwhelming at first, but not very hard to learn to use.
I remember being so excited to finally have her home. She would be able to finally be a part of our daily everyday life and be able to bond with her siblings. I was so happy to finally be able to hold her all the time and not have to leave her in the hospital. Also, I felt, as I'm sure all mothers do, that although we had wonderful nurses in the hospital, no one could love her as much as I did.
We went in on Tuesday morning with the car seat. She had to have a car seat test first. Preemies sometimes have a hard time because if their head falls forward in the car seat they can't breathe and then you have to take them home in a car bed. She passed with flying colors and didn't mind too much being in her car seat. The doctor came in to do his last check-up and found out from the nurse that Eirion was having a hard time regulating her body temperature. She was cold. I told him how warm my house is and assured him that I could keep her warm, but he didn't feel it was a good idea to send her home yet if she couldn't regulate her body temperature. We were so sad and the kids were so sad that she didn't come home.
But remember Nancy the NICU guru? She came to see Eirion and Kristi told her what was going on, so Nancy went to work and decided to get her warm. She put her in a long sleeve onesie, a sleeper and a warm, thick, snuggly thing to keep her warm. It worked! She stayed warm. So the date was sent for the next day.
The next day we went and if she was just put in a sleeper, she was having a hard time regulating her temperature, but if she had on layers she stayed warm. The doctor seemed to think it was a side effect of T13 and asked if I felt comfortable taking her home. I said yes and that I was comfortable with my ability to keep her warm. He said he would release her then.
Right before we left, Kristi came in to say goodbye. She cried and so did I. You become attached to those special nurses who love your baby when you're not there. The doctor had signed the necessary papers and home we went finally! She was a month and a half old.
Having her home was wonderful and the kids were thrilled. The younger ones were happy that they could see her and touch her anytime they wanted. Jared loved peeking over the side of the bassinet. A few days after she came home I was sitting by her bassinet and noticed a little orange chee-toh smudge on the side. Apparently he wanted to show Eirion the joy of Chee-toh's.
At times during her hospital stay we weren't sure if she would ever come home so we were so grateful. At first we had her bassinet in the living room during the day and our bedroom at night. I was nervous and wanted her to be with us as much as possible so I could make sure she was o.k. She slept a lot at first. My mom and one of her friends had made a lot of hats for her and she loved those hats. Sometimes if she was crying and I put a hat on her, she'd stop and go to sleep. She loved to snuggle and was probably my snuggliest, cuddliest baby and I loved cuddling her and feeling her sweet little body snuggled up to my shoulder. She was our little princess and I dressed her accordingly. After 5 boys, I had a great time putting her in little teeny, tiny, very girly outfits, most of which were gifts from wonderful friends and family.
After about 3 weeks with no apnea episodes, I stopped using the apnea monitor. She never needed it. I also started putting her in our bedroom when she slept because it was quieter in there. But I bought a baby monitor with 2 receivers and I put one in the kitchen and one in the living room. Even with the monitors, I still checked on her about every 10 minutes when she was sleeping. I knew the leading cause of death for babies with T13 is that for no explainable reason, they just stop breathing, so I checked on her a lot.
We felt so blessed to finally have her home.
Next: The Summer of Eirion
Thursday, October 6, 2011
The Story of Eirion Part 4: Surgery
When Eirion was about a month old, she started having a few problems. She had a few apnea episodes--periods where she would stop breathing, and also feeding problems. I told you how much she hated the feeding tube and would pull it out. Every time the nurses put it back in, it would irritate her throat. They taught me how to put it in and check to make sure it was in correctly, but quite frankly the thought of doing that at home scared me to death.
She also started having other feeding problems--she started throwing up-not just normal baby spit up, she would throw up her entire feeding. This was a very scary thing because babies with Trisomy 13 don't have a normal gag reflex so when she threw up, she couldn't breathe. Also if a baby is throwing up, they don't gain weight. One time while Layne's dad was visiting, we were all in her hospital room. I was holding her and rocking her and she had finished eating. She threw up, so I quickly turned her over, but she couldn't get it all out and she stopped breathing. That's when favorite nurse #3, Nancy, came in. We yelled for help and she very calmly took her, suctioned her throat, rubbed her back and with her nurse magic, got her to cry, and therefore, start breathing again. We called Nancy the NICU guru, because she knew all sorts of handy tricks to get babies to calm down, keep them warm, and all sorts of things. She, along with Kristi, also helped Eirion after her surgery. After that we learned that Eirion did much better if her head was elevated during and after a feeding.
After that very scary situation, we had a talk with the doctor and decided that installing a Mic-Key button might be the way to go. A little hole would be made on her tummy and this little thing that looks like a button put in. When it was time for her to eat, a tube was attached to the Mic-Key button and a pump pumped in her milk. The food would go directly into her stomach. I'm probably not describing it very well, but it's a pretty quick and easy procedure that is used a lot. At some future date, probably after her mouth was fixed and she was eating completely orally, it could then be removed. I was a lot more comfortable with this prospect and relieved that she wouldn't have a tube down her throat constantly irritating it.
They took x-rays and found out as was usually the case with Eirion, that things weren't going to be as easy as they had hoped. She had a malrotation(twisting) of the intestine and also some of her internal organs including her stomach, were on the wrong side. So now we had a dilemma. A simple procedure had now turned into major surgery. It's scary thinking about having surgery performed on your 4 lb. baby. We prayed about it and asked our favorite doctor for his advice. He said that left alone, the intestine would continue to twist and would cause an excruciatingly painful death. We certainly didn't want her to suffer. He also said that even if she lived only a few months wouldn't it be better if she were comfortable? We were anxious to have her home, but the surgery would only delay that for about a week. We opted to do the surgery.
The night before her surgery Layne gave her a priesthood blessing. In the blessing Eirion was told that the doctors would not only fix her intestine, but they would be guided to find whatever else was wrong and fix it also.
We were at the hospital early and just held her and I cried thinking about them operating on my tiny baby girl. Then they took her and we waited. Finally, they brought her back. She was so pale and was again hooked up to a ventilator and had a whole bunch of other tubes and machines attached to her. She was still sedated. I stood by her bed and cried. I would have taken the pain from her in a second if I could have. The doctor and anesthesiologist talked to us next. The anesthesiologist told us that when he was putting her under, he happened to be looking right at her and she threw up. Luckily he was looking at her when it happened, and they immediately suctioned her out and he was quite sure that nothing went into her lungs. What a blessing. Then it was the surgeons turn. He had fixed everything and installed the Mic-Key button. Also, while he was in there, he noticed that she had an obstruction in her bowel which he cleared and he also noticed her appendix looked inflamed, so he removed it and sent it to pathology--also a blessing. We got the results back a few days later. She had appendicitis, which if not removed would have killed her. The surgeon said that in his 30 years of being a surgeon he's only seen that one other time. Also, if it had not been removed she would have continued to get sicker and the doctors would not have know what the problem was because you don't think a baby is going to have appendicitis.
We spent more time with her and then went home. We went to see her the next morning and she was not doing well. She was still really pale and sometimes when she would move you could see her grimace in pain. They gave her as much pain medication as they could, but it broke my heart, knowing she was in pain. Especially since I had just had surgery myself. Kristi said they might have to give her a blood transfusion.
We were at a play in Tempe later that day when Kristi called us and said they were going to give her a transfusion. She also had pulled the ventilator tube out again and they had a hard time getting it back in. Kristi told us later that she thought we were going to lose her, but the doctor came and he was able to get the tube back in. We were really sad and discouraged that night (especially me), wondering if we had made a wrong choice.
The next day, though, she had turned pink again and she started to improve and continued to improve and get better. She was getting closer and closer to being able to come home and be with her family.
She also started having other feeding problems--she started throwing up-not just normal baby spit up, she would throw up her entire feeding. This was a very scary thing because babies with Trisomy 13 don't have a normal gag reflex so when she threw up, she couldn't breathe. Also if a baby is throwing up, they don't gain weight. One time while Layne's dad was visiting, we were all in her hospital room. I was holding her and rocking her and she had finished eating. She threw up, so I quickly turned her over, but she couldn't get it all out and she stopped breathing. That's when favorite nurse #3, Nancy, came in. We yelled for help and she very calmly took her, suctioned her throat, rubbed her back and with her nurse magic, got her to cry, and therefore, start breathing again. We called Nancy the NICU guru, because she knew all sorts of handy tricks to get babies to calm down, keep them warm, and all sorts of things. She, along with Kristi, also helped Eirion after her surgery. After that we learned that Eirion did much better if her head was elevated during and after a feeding.
After that very scary situation, we had a talk with the doctor and decided that installing a Mic-Key button might be the way to go. A little hole would be made on her tummy and this little thing that looks like a button put in. When it was time for her to eat, a tube was attached to the Mic-Key button and a pump pumped in her milk. The food would go directly into her stomach. I'm probably not describing it very well, but it's a pretty quick and easy procedure that is used a lot. At some future date, probably after her mouth was fixed and she was eating completely orally, it could then be removed. I was a lot more comfortable with this prospect and relieved that she wouldn't have a tube down her throat constantly irritating it.
They took x-rays and found out as was usually the case with Eirion, that things weren't going to be as easy as they had hoped. She had a malrotation(twisting) of the intestine and also some of her internal organs including her stomach, were on the wrong side. So now we had a dilemma. A simple procedure had now turned into major surgery. It's scary thinking about having surgery performed on your 4 lb. baby. We prayed about it and asked our favorite doctor for his advice. He said that left alone, the intestine would continue to twist and would cause an excruciatingly painful death. We certainly didn't want her to suffer. He also said that even if she lived only a few months wouldn't it be better if she were comfortable? We were anxious to have her home, but the surgery would only delay that for about a week. We opted to do the surgery.
The night before her surgery Layne gave her a priesthood blessing. In the blessing Eirion was told that the doctors would not only fix her intestine, but they would be guided to find whatever else was wrong and fix it also.
We were at the hospital early and just held her and I cried thinking about them operating on my tiny baby girl. Then they took her and we waited. Finally, they brought her back. She was so pale and was again hooked up to a ventilator and had a whole bunch of other tubes and machines attached to her. She was still sedated. I stood by her bed and cried. I would have taken the pain from her in a second if I could have. The doctor and anesthesiologist talked to us next. The anesthesiologist told us that when he was putting her under, he happened to be looking right at her and she threw up. Luckily he was looking at her when it happened, and they immediately suctioned her out and he was quite sure that nothing went into her lungs. What a blessing. Then it was the surgeons turn. He had fixed everything and installed the Mic-Key button. Also, while he was in there, he noticed that she had an obstruction in her bowel which he cleared and he also noticed her appendix looked inflamed, so he removed it and sent it to pathology--also a blessing. We got the results back a few days later. She had appendicitis, which if not removed would have killed her. The surgeon said that in his 30 years of being a surgeon he's only seen that one other time. Also, if it had not been removed she would have continued to get sicker and the doctors would not have know what the problem was because you don't think a baby is going to have appendicitis.
We spent more time with her and then went home. We went to see her the next morning and she was not doing well. She was still really pale and sometimes when she would move you could see her grimace in pain. They gave her as much pain medication as they could, but it broke my heart, knowing she was in pain. Especially since I had just had surgery myself. Kristi said they might have to give her a blood transfusion.
We were at a play in Tempe later that day when Kristi called us and said they were going to give her a transfusion. She also had pulled the ventilator tube out again and they had a hard time getting it back in. Kristi told us later that she thought we were going to lose her, but the doctor came and he was able to get the tube back in. We were really sad and discouraged that night (especially me), wondering if we had made a wrong choice.
The next day, though, she had turned pink again and she started to improve and continued to improve and get better. She was getting closer and closer to being able to come home and be with her family.
Wednesday, October 5, 2011
Eirion Part 3
At first Eirion got her nutrition through an I.V. Because of her cleft lip, she wouldn't have been able to nurse and at 33 weeks, she was too small and weak anyway. At 33 weeks, a baby doesn't know how to suck yet. So I began pumping. I pumped until she passed away. I tried to give her breastmilk as much as possible because it was made just for her and she tolerated it better than anything else. As she got a little older and bigger we did have to supplement with formula because the demand exceeded the supply but for the first 3- 3 1/2 months she only got breastmilk. Pumping was never my favorite thing to do, but she was worth it.
One of the blessings we found out was that unlike most Trisomy 13 babies, Eirion's heart seemed to be normal. Most babies born with Trisomy 13 have serious heart problems. Their average life span is about 2 1/2 days to about a week.
Back to the NICU. After a few days when she became more stable, they gave her a feeding tube that went in her mouth, down her throat into her stomach and also started giving her a little bit of breastmilk with some powder added that gave it more calories. With preemies, gaining weight is always a concern. She hated that feeding tube and pulled it out on a routine basis. She hated having anything in her mouth (remember the ventilator?) because it was a nuisance to her.
About this time we also had the pleasure (NOT) of meeting a Dr. whom we call Dr. Doom. He really had no business with us and wasn't even a regular doctor at Banner Desert. He somehow though felt it was his duty to let us know just exactly what Trisomy 13 was and what a horrible diagnosis it was. He cornered us near her isolette and proceeded to tell us what a "devastating diagnosis" it was. He went on to tell us all the challenges we faced and that our daughter would never, crawl, walk, smile, coo, and that she would "never interact with her environment." We sat there stunned at first. We had read the stats and already had everything explained to us. I don't know why he felt it was his personal responsibility to tell us all this stuff we already knew. Then I got mad and I thought "How dare you tell me what my daughter can and cannot do or will or will not do." As far as never interacting with her environment, I knew that was a load of crap. No matter who you are or what your abilities or disabilities are you can feel love and respond to it. Maybe her body was damaged, but her spirit wasn't. I didn't want that man anywhere near my daughter ever again. I think he knew he had crossed the line because after that he was as nice as could be. After his little talk, I knew my most important job as her mother was to let her know how much she was loved.
Eirion was born on Friday and on Sunday we got the results of her DNA test. She did indeed have Trisomy 13. There are 3 different types. Mosaic, which means only some of the cells have an extra 13th chromosome, translocation(can't remember exactly what that is) and full Trisomy 13. Mosaic and translocation are not as severe. Eirion had full Trisomy 13, the most severe type. That meant that every cell in her body had an extra 13th chromosome.
I finally got to leave the hospital after about 5 days. My blood pressure was still high, but it had gone down enough that they discharged me. The doctors figured one of the reasons that it wasn't going down as fast as they had hoped was because of stress (ya think?). I had really missed my kids, but it was so hard to leave my baby there. The nurses are really good, though, and they call you if anything changes and we would always call before we went to bed and right after we got up in the morning.
We kind of got into a routine. My mom had flown down from Idaho to help out, so she took care of Jared. Layne would usually get up and get the kids breakfast and make their lunches so I could sleep and continue to recover. I don't remember how they got to school. I think the principal took them a lot (he lives just a couple of miles from us and his wife and I carpool in the afternoon). Kyrie also drove them once in a while and Layne did also. Then Layne would go to the hospital and spend time with Eirion on his way to work. Everyone knew Layne because he's a super friendly guy and because he would go in and sing and read to her. His favorite song to sing to her was "Caledonia" by Celtic Woman. I still can't listen to it without crying. I would get ready at home and then I would head up there to spend a few hours with her. I tried to be home when my kids got home from school so we could keep their lives as normal as possible. Layne would also stop on his way home from work. Sometimes I'd return at night when the kids were in bed. In some ways we did well at keeping things normal at home and in some ways not so well. It's hard to try to keep your life "normal" when it's anything but.
One thing that was really hard was that the only kids who could see and visit her were the three oldest. It was RSV season so you had to be 12 to be in the NICU. Zak was really sad about that. He couldn't understand why he couldn't go see her and that broke my heart.
One night we decided that for family night we would go see Eirion. They have an observation window where they can bring the baby and visitors can see. All I can say is thank goodness for nurses who are willing to break the rules. When we got there, I stayed with the younger kids while Layne went and talked to the nurses. Enter favorite nurse #2, Susan. She was another one that I knew I didn't have to worry when she was taking care of Eirion. She was wonderful and was also at Eirion's funeral. Anyway, she came to us and said that she had permission for all the kids to come into the observation room and she would bring Eirion to us. It was like Christmas! They were finally going to get to see, hold and touch their baby sister. We told them how she looked and had shown them pictures so they were prepared. It was the best family night ever. As I was holding Eirion, Jared who is 4 said, "Mom, why are you holding her?" and I said, "Because she's my baby." He then looked at me and said, "But she's my baby sister!" Only one of our children was a little reserved. He was having a hard time accepting that he was going to have a special needs sister. But after we brought her home, he fell in love with her too and would sing to her and liked to hold her. We all adored her.
One of the blessings we found out was that unlike most Trisomy 13 babies, Eirion's heart seemed to be normal. Most babies born with Trisomy 13 have serious heart problems. Their average life span is about 2 1/2 days to about a week.
Back to the NICU. After a few days when she became more stable, they gave her a feeding tube that went in her mouth, down her throat into her stomach and also started giving her a little bit of breastmilk with some powder added that gave it more calories. With preemies, gaining weight is always a concern. She hated that feeding tube and pulled it out on a routine basis. She hated having anything in her mouth (remember the ventilator?) because it was a nuisance to her.
About this time we also had the pleasure (NOT) of meeting a Dr. whom we call Dr. Doom. He really had no business with us and wasn't even a regular doctor at Banner Desert. He somehow though felt it was his duty to let us know just exactly what Trisomy 13 was and what a horrible diagnosis it was. He cornered us near her isolette and proceeded to tell us what a "devastating diagnosis" it was. He went on to tell us all the challenges we faced and that our daughter would never, crawl, walk, smile, coo, and that she would "never interact with her environment." We sat there stunned at first. We had read the stats and already had everything explained to us. I don't know why he felt it was his personal responsibility to tell us all this stuff we already knew. Then I got mad and I thought "How dare you tell me what my daughter can and cannot do or will or will not do." As far as never interacting with her environment, I knew that was a load of crap. No matter who you are or what your abilities or disabilities are you can feel love and respond to it. Maybe her body was damaged, but her spirit wasn't. I didn't want that man anywhere near my daughter ever again. I think he knew he had crossed the line because after that he was as nice as could be. After his little talk, I knew my most important job as her mother was to let her know how much she was loved.
Eirion was born on Friday and on Sunday we got the results of her DNA test. She did indeed have Trisomy 13. There are 3 different types. Mosaic, which means only some of the cells have an extra 13th chromosome, translocation(can't remember exactly what that is) and full Trisomy 13. Mosaic and translocation are not as severe. Eirion had full Trisomy 13, the most severe type. That meant that every cell in her body had an extra 13th chromosome.
I finally got to leave the hospital after about 5 days. My blood pressure was still high, but it had gone down enough that they discharged me. The doctors figured one of the reasons that it wasn't going down as fast as they had hoped was because of stress (ya think?). I had really missed my kids, but it was so hard to leave my baby there. The nurses are really good, though, and they call you if anything changes and we would always call before we went to bed and right after we got up in the morning.
We kind of got into a routine. My mom had flown down from Idaho to help out, so she took care of Jared. Layne would usually get up and get the kids breakfast and make their lunches so I could sleep and continue to recover. I don't remember how they got to school. I think the principal took them a lot (he lives just a couple of miles from us and his wife and I carpool in the afternoon). Kyrie also drove them once in a while and Layne did also. Then Layne would go to the hospital and spend time with Eirion on his way to work. Everyone knew Layne because he's a super friendly guy and because he would go in and sing and read to her. His favorite song to sing to her was "Caledonia" by Celtic Woman. I still can't listen to it without crying. I would get ready at home and then I would head up there to spend a few hours with her. I tried to be home when my kids got home from school so we could keep their lives as normal as possible. Layne would also stop on his way home from work. Sometimes I'd return at night when the kids were in bed. In some ways we did well at keeping things normal at home and in some ways not so well. It's hard to try to keep your life "normal" when it's anything but.
One thing that was really hard was that the only kids who could see and visit her were the three oldest. It was RSV season so you had to be 12 to be in the NICU. Zak was really sad about that. He couldn't understand why he couldn't go see her and that broke my heart.
One night we decided that for family night we would go see Eirion. They have an observation window where they can bring the baby and visitors can see. All I can say is thank goodness for nurses who are willing to break the rules. When we got there, I stayed with the younger kids while Layne went and talked to the nurses. Enter favorite nurse #2, Susan. She was another one that I knew I didn't have to worry when she was taking care of Eirion. She was wonderful and was also at Eirion's funeral. Anyway, she came to us and said that she had permission for all the kids to come into the observation room and she would bring Eirion to us. It was like Christmas! They were finally going to get to see, hold and touch their baby sister. We told them how she looked and had shown them pictures so they were prepared. It was the best family night ever. As I was holding Eirion, Jared who is 4 said, "Mom, why are you holding her?" and I said, "Because she's my baby." He then looked at me and said, "But she's my baby sister!" Only one of our children was a little reserved. He was having a hard time accepting that he was going to have a special needs sister. But after we brought her home, he fell in love with her too and would sing to her and liked to hold her. We all adored her.
Tuesday, October 4, 2011
The Story of Eirion Part 2
I thought this would be pretty easy for me to write. It's actually a lot harder than I thought. Writing it down brings all the feelings flooding back.
I need to clarify why I am writing this. I am not writing this to get people to feel sorry for me or for people to think I am some fantastic woman. I am not. I am just a regular person who was given a hard situation and did the very best I could with what life handed me. I mostly am writing this so my children can have kind of a memoir of their baby sister and remember the joy and sweetness she brought to our lives. Anyway, on with the story.......
They took me into the operating room which was cold, sterile and bright. The perinatologist was there with his team along with a neonatologist and her team. Layne was stationed up by my head. I already had an epidural but they also gave me morphine and when I was sufficiently numb, they began.
The perinatologist and his assistant did not even hardly acknowledge my existence. They didn't talk to me or try to reassure me--nothing. They did however, laugh and joke with each other through the entire procedure. I was angry. I thought it was completely inappropriate and unprofessional.
After a few minutes, they pulled Eirion out and she didn't cry. The first words I heard were the neonatologist saying, "She's got a cleft lip." My heart sank. Then I thought, "O.k. at least that is something that I know can be fixed." But she still wasn't crying and I kept asking over and over, "Why isn't she crying?", getting more and more panicked each time. Layne finally came over and told me she was having trouble breathing on her own, so they were giving her oxygen. She was born on 3-4-2011 at 3:04 a.m. and weighed 3 lbs. 3 oz. Quite a bit smaller than the 4 lbs. which was predicted. I was exactly 33 weeks. I got a brief glimpse of her and they whisked her up to the NICU. Layne went with them. Then the doctors continued stapling up my incision. I had a cold and I suddenly felt like I couldn't breathe, so they gave me oxygen, and then because of the anesthesia I got nauseous and informed them I was going to throw up. I couldn't sit up because they were still stapling me, so I turned my head to the side and they suctioned. Gross.
I was wheeled to the recovery room and left completely alone to wonder and worry about my baby. After a while when the anesthesia started to wear off a little, I got really cold and started shaking. The nurse finally came back and checked on me and got me a couple of blankets.
After what seemed like forever but was actually about an hour and a half, Layne and the neonatologist returned. Eirion had been put on a ventilator which was helping her breathe. She told me that due to Eirion's physical characteristics she thought she had Trisomy 13. I knew that Trisomy 21 was Down Syndrome and I had heard of Trisomy 13, but I didn't know what it was. She said some of the markers that Eirion had included lowered ears(not ever really noticeable), a bilateral cleft lip and palate(which is the most severe and the most difficult to repair), rocker bottom feet, and an extra finger on her hand. She also told us that she would have severe mental disabilities and probably would not live very long. We were devastated.
We decided to name her Eirion. In Welsh it means beautiful, lovely, fair. We figured with all the challenges she was going to face she needed a beautiful name. Her middle name, Lorraine, is also my middle name and was my grandmother's name.
I actually do not remember a whole lot of what happened in the next few days. A lot of it is a blur. I remember certain things, but not in chronological order, so I'm sorry if what follows seems disjointed.
I had our laptop with me and I remember being in my hospital room looking up Trisomy 13 and crying. I remember a lot of tears, blessings and prayers.
I remember being wheeled up to the NICU the next morning to see my baby. I was still on an IV, because my blood pressure refused to go down so a nurse had to accompany me. Also, after just having a C-section I wasn't moving around very well yet. Not only was my blood pressure still really high, but my whole body had swelled up like a balloon. My hands were so swollen I couldn't close them and when I walked I looked like C-3PO from Star Wars because my legs were so big I just kind of teetered from side to side. In the first 2 weeks after having Eirion I dropped 40 lbs. As my blood pressure improved and went down, the swelling went down also.
I was met up in the NICU by the neonatologist. He told me that Eirion having Trisomy 13 was not my fault. He said that nothing I did caused it and nothing I did could have prevented it. For whatever reason it is just something that happens. He also said it had nothing to do with my age and it was not genetic because I had 7 other kids that were born completely healthy. The geneticist told me the same thing. That was reassuring, because I had wondered if I had done something that had caused it. She(the geneticist) and another neonatologist also told me that I was still young enough to have a couple more children and if I did, chances were that they would be just fine. We had already decided, though, that Eirion would be our last.
Eirion was hooked up to a ventilator and had probes on her to measure her heart rate, oxygen saturation and something else, which I have now forgotten. She was so tiny and fragile. I met her nurse, Kristi, who was taking care of her that day and again, what a blessing! We love Kristi and she will always have a special place in our hearts because she loved Eirion and took such good care of her. She was there at her blessing and funeral. The first thing Kristi said was, "There's such a sweetness about her." We met her primary neonatologist. He again told us what he thought her diagnosis was and that her life expectancy was not long. He was very concerned about me getting to hold her because he thought she would pass away soon. I was a little nervous at first and thought, "If I get too attached, it will be just that much harder when she passes away." But as she was handed to me and I held her sweet little body and looked at her sweet little face, I fell in love. Even though she was not the perfect child I had expected, she was my baby, and my protective mother's instinct kicked in.
The next few days were a roller coaster of emotions. She did start breathing on her own and 2 hours before the doctor was going to take her off the ventilator, she decided she had had enough and pulled it out herself, and breathed on her own from that point on. That's when we knew we had a little fighter.
When you find out that life is not what you expected, you go through a grieving process. We did this. You grieve for the life you thought you were going to have. I did think, "why me?" more than once. And you realize that your life will never be the same.
I remember thinking that this was one of Heavenly Father's special spirits and he trusted us enough to send her to me and our family. I also remember thinking "Heavenly Father thinks I can handle this, so I guess I can."
During the time I was in the hospital, I had a lot of visitors. You will never know how thankful I was for that and for all the love, kindness, meals, childcare, and prayers offered in our behalf. It was wonderful knowing so many people cared.
Again, it is difficult to remember everything, so I'm sorry if it's confusing. That's all for now. I'll write more tomorrow.
I need to clarify why I am writing this. I am not writing this to get people to feel sorry for me or for people to think I am some fantastic woman. I am not. I am just a regular person who was given a hard situation and did the very best I could with what life handed me. I mostly am writing this so my children can have kind of a memoir of their baby sister and remember the joy and sweetness she brought to our lives. Anyway, on with the story.......
They took me into the operating room which was cold, sterile and bright. The perinatologist was there with his team along with a neonatologist and her team. Layne was stationed up by my head. I already had an epidural but they also gave me morphine and when I was sufficiently numb, they began.
The perinatologist and his assistant did not even hardly acknowledge my existence. They didn't talk to me or try to reassure me--nothing. They did however, laugh and joke with each other through the entire procedure. I was angry. I thought it was completely inappropriate and unprofessional.
After a few minutes, they pulled Eirion out and she didn't cry. The first words I heard were the neonatologist saying, "She's got a cleft lip." My heart sank. Then I thought, "O.k. at least that is something that I know can be fixed." But she still wasn't crying and I kept asking over and over, "Why isn't she crying?", getting more and more panicked each time. Layne finally came over and told me she was having trouble breathing on her own, so they were giving her oxygen. She was born on 3-4-2011 at 3:04 a.m. and weighed 3 lbs. 3 oz. Quite a bit smaller than the 4 lbs. which was predicted. I was exactly 33 weeks. I got a brief glimpse of her and they whisked her up to the NICU. Layne went with them. Then the doctors continued stapling up my incision. I had a cold and I suddenly felt like I couldn't breathe, so they gave me oxygen, and then because of the anesthesia I got nauseous and informed them I was going to throw up. I couldn't sit up because they were still stapling me, so I turned my head to the side and they suctioned. Gross.
I was wheeled to the recovery room and left completely alone to wonder and worry about my baby. After a while when the anesthesia started to wear off a little, I got really cold and started shaking. The nurse finally came back and checked on me and got me a couple of blankets.
After what seemed like forever but was actually about an hour and a half, Layne and the neonatologist returned. Eirion had been put on a ventilator which was helping her breathe. She told me that due to Eirion's physical characteristics she thought she had Trisomy 13. I knew that Trisomy 21 was Down Syndrome and I had heard of Trisomy 13, but I didn't know what it was. She said some of the markers that Eirion had included lowered ears(not ever really noticeable), a bilateral cleft lip and palate(which is the most severe and the most difficult to repair), rocker bottom feet, and an extra finger on her hand. She also told us that she would have severe mental disabilities and probably would not live very long. We were devastated.
We decided to name her Eirion. In Welsh it means beautiful, lovely, fair. We figured with all the challenges she was going to face she needed a beautiful name. Her middle name, Lorraine, is also my middle name and was my grandmother's name.
I actually do not remember a whole lot of what happened in the next few days. A lot of it is a blur. I remember certain things, but not in chronological order, so I'm sorry if what follows seems disjointed.
I had our laptop with me and I remember being in my hospital room looking up Trisomy 13 and crying. I remember a lot of tears, blessings and prayers.
I remember being wheeled up to the NICU the next morning to see my baby. I was still on an IV, because my blood pressure refused to go down so a nurse had to accompany me. Also, after just having a C-section I wasn't moving around very well yet. Not only was my blood pressure still really high, but my whole body had swelled up like a balloon. My hands were so swollen I couldn't close them and when I walked I looked like C-3PO from Star Wars because my legs were so big I just kind of teetered from side to side. In the first 2 weeks after having Eirion I dropped 40 lbs. As my blood pressure improved and went down, the swelling went down also.
I was met up in the NICU by the neonatologist. He told me that Eirion having Trisomy 13 was not my fault. He said that nothing I did caused it and nothing I did could have prevented it. For whatever reason it is just something that happens. He also said it had nothing to do with my age and it was not genetic because I had 7 other kids that were born completely healthy. The geneticist told me the same thing. That was reassuring, because I had wondered if I had done something that had caused it. She(the geneticist) and another neonatologist also told me that I was still young enough to have a couple more children and if I did, chances were that they would be just fine. We had already decided, though, that Eirion would be our last.
Eirion was hooked up to a ventilator and had probes on her to measure her heart rate, oxygen saturation and something else, which I have now forgotten. She was so tiny and fragile. I met her nurse, Kristi, who was taking care of her that day and again, what a blessing! We love Kristi and she will always have a special place in our hearts because she loved Eirion and took such good care of her. She was there at her blessing and funeral. The first thing Kristi said was, "There's such a sweetness about her." We met her primary neonatologist. He again told us what he thought her diagnosis was and that her life expectancy was not long. He was very concerned about me getting to hold her because he thought she would pass away soon. I was a little nervous at first and thought, "If I get too attached, it will be just that much harder when she passes away." But as she was handed to me and I held her sweet little body and looked at her sweet little face, I fell in love. Even though she was not the perfect child I had expected, she was my baby, and my protective mother's instinct kicked in.
The next few days were a roller coaster of emotions. She did start breathing on her own and 2 hours before the doctor was going to take her off the ventilator, she decided she had had enough and pulled it out herself, and breathed on her own from that point on. That's when we knew we had a little fighter.
When you find out that life is not what you expected, you go through a grieving process. We did this. You grieve for the life you thought you were going to have. I did think, "why me?" more than once. And you realize that your life will never be the same.
I remember thinking that this was one of Heavenly Father's special spirits and he trusted us enough to send her to me and our family. I also remember thinking "Heavenly Father thinks I can handle this, so I guess I can."
During the time I was in the hospital, I had a lot of visitors. You will never know how thankful I was for that and for all the love, kindness, meals, childcare, and prayers offered in our behalf. It was wonderful knowing so many people cared.
Again, it is difficult to remember everything, so I'm sorry if it's confusing. That's all for now. I'll write more tomorrow.
Monday, October 3, 2011
The Story of Eirion
Before I make this a normal, "update everyone on our lives"blog, I feel like I need to tell the story of Eirion. After she passed away, I was commanded, not just told, but commanded, in a blessing to tell my story and to use our experience with Eirion to help others throughout my life. This will be long, so I can't tell it all in one post, but a series of posts.
Last August 2010, we found out VERY unexpectedly that we were going to have another baby. I was really upset about this at first. I had problems with my blood pressure at the end of my pregnancy with Jared and I didn't want to go through that again. Also, I had just turned 39, which concerned me and I knew by the time this baby was born Kyrie would be 18 and about to graduate from high school. All precautions were set into place, and yet it still happened. Layne had told me previously there was a little girl up there, but after Jared, I was done.
But, as usually happens, the Lord let me know that I was not the one in charge. After I got over the shock, I started to get excited. I figured it was a girl, because with all my girls, I have thrown up. I never threw up with any of the boys, but I did with all the girls. My pregnancy was pretty uneventful until the end.
When we had our ultrasound at 20 weeks, we found out that we were indeed going to have a girl and in the words of the Dr. "she looks perfect." So we were expecting a perfect little girl. We ended up having 4 more ultrasounds and not one of them picked up anything abnormal. Looking back, I think that was a tender mercy. I think if we had known the prognosis before her birth, we would not have fought so hard to keep her.
Anyway, things were fine until I was about 32 1/2 weeks pregnant. Suddenly my ankles and face swelled up. I knew from my experience with Jared, that that probably meant my blood pressure was high. I went to the house of a friend who is a nurse, and had her take my blood pressure. We took it twice and she told me to go home and call my doctor. By this time it was about 9 p.m. I called him and he called back within 5 minutes and told me to go to the hospital. I can't remember how high my blood pressure was, but I do know that they told me later that I was at risk for having a stroke.
They attached me to a fetal monitor and I was reassured when I heard the steady beat of her heart. She hadn't moved much that day, so that was another concern I had. I figured they'd tell me I was on bed rest and send me home. Instead they admitted me.
I stayed in the hospital so they could monitor me. They gave me an I.V. of magnesium sulfate to prevent a stroke. It is nasty stuff. It makes you feel all woozy and hot. For anyone who knows me, I am never hot. If the temperature drops below 80, I think I'm freezing.
The next day when my blood pressure wouldn't go down, they turned my care over to a perinatologist who told me that I would stay in the hospital until I had the baby which would probably be within a week.
Then we met a neonatologist who told me I was being transferred to a different hospital where they had a Level III NICU(Neonatal Intensive Care Unit). Because I was going to have a preemie most likely, they wanted to move me where I would be if I had any problems. That also turned out to be a blessing. If she had had to be transferred, she probably would not have made it in her fragile condition.
Being on the magnesium sulfate, she hadn't moved hardly at all. We had 4 ultrasounds in the 2 different hospitals, and again, not one of them picked up any sort of a problem. She didn't move much, but her heartbeat was steady and she got the hiccups, which I was told was a good sign. They also said according to her measurements, she weighed about 4 lbs.
By this time I was almost 33 weeks. I was continuously monitored. That night, her heart rate started to dip and then it would be o.k. After it dropped a few more times, the doctor on call was really worried, so he told me that he was going to induce me. They tried, but at 33 weeks, my body wasn't ready and didn't respond fast enough. Her heart rate kept dropping, so he told me they were going to do a C-section. I went into major panic mode as they started to prep me for surgery. I have never had any kind of surgery, no broken bones--nothing. So the thought of them cutting me open terrified me. I remember thinking as they wheeled me into the operating room, "people go through this every day." And I tried to remember all the women I know who have had C-sections.
Last August 2010, we found out VERY unexpectedly that we were going to have another baby. I was really upset about this at first. I had problems with my blood pressure at the end of my pregnancy with Jared and I didn't want to go through that again. Also, I had just turned 39, which concerned me and I knew by the time this baby was born Kyrie would be 18 and about to graduate from high school. All precautions were set into place, and yet it still happened. Layne had told me previously there was a little girl up there, but after Jared, I was done.
But, as usually happens, the Lord let me know that I was not the one in charge. After I got over the shock, I started to get excited. I figured it was a girl, because with all my girls, I have thrown up. I never threw up with any of the boys, but I did with all the girls. My pregnancy was pretty uneventful until the end.
When we had our ultrasound at 20 weeks, we found out that we were indeed going to have a girl and in the words of the Dr. "she looks perfect." So we were expecting a perfect little girl. We ended up having 4 more ultrasounds and not one of them picked up anything abnormal. Looking back, I think that was a tender mercy. I think if we had known the prognosis before her birth, we would not have fought so hard to keep her.
Anyway, things were fine until I was about 32 1/2 weeks pregnant. Suddenly my ankles and face swelled up. I knew from my experience with Jared, that that probably meant my blood pressure was high. I went to the house of a friend who is a nurse, and had her take my blood pressure. We took it twice and she told me to go home and call my doctor. By this time it was about 9 p.m. I called him and he called back within 5 minutes and told me to go to the hospital. I can't remember how high my blood pressure was, but I do know that they told me later that I was at risk for having a stroke.
They attached me to a fetal monitor and I was reassured when I heard the steady beat of her heart. She hadn't moved much that day, so that was another concern I had. I figured they'd tell me I was on bed rest and send me home. Instead they admitted me.
I stayed in the hospital so they could monitor me. They gave me an I.V. of magnesium sulfate to prevent a stroke. It is nasty stuff. It makes you feel all woozy and hot. For anyone who knows me, I am never hot. If the temperature drops below 80, I think I'm freezing.
The next day when my blood pressure wouldn't go down, they turned my care over to a perinatologist who told me that I would stay in the hospital until I had the baby which would probably be within a week.
Then we met a neonatologist who told me I was being transferred to a different hospital where they had a Level III NICU(Neonatal Intensive Care Unit). Because I was going to have a preemie most likely, they wanted to move me where I would be if I had any problems. That also turned out to be a blessing. If she had had to be transferred, she probably would not have made it in her fragile condition.
Being on the magnesium sulfate, she hadn't moved hardly at all. We had 4 ultrasounds in the 2 different hospitals, and again, not one of them picked up any sort of a problem. She didn't move much, but her heartbeat was steady and she got the hiccups, which I was told was a good sign. They also said according to her measurements, she weighed about 4 lbs.
By this time I was almost 33 weeks. I was continuously monitored. That night, her heart rate started to dip and then it would be o.k. After it dropped a few more times, the doctor on call was really worried, so he told me that he was going to induce me. They tried, but at 33 weeks, my body wasn't ready and didn't respond fast enough. Her heart rate kept dropping, so he told me they were going to do a C-section. I went into major panic mode as they started to prep me for surgery. I have never had any kind of surgery, no broken bones--nothing. So the thought of them cutting me open terrified me. I remember thinking as they wheeled me into the operating room, "people go through this every day." And I tried to remember all the women I know who have had C-sections.
Sunday, October 2, 2011
Something new for me
I have decided to try something completely new for me and I'm entering the world of blogging for a number of reasons. It's a little bit scary, knowing that all your thoughts and feeling are out there for the whole world to see.
I have never been good at keeping a journal. It has always seemed too time-consuming to me. I start, and intend to do well, then I get behind and then get overwhelmed and as a result, end up not doing anything. Maybe, since I can type this, it won't seem like it's too time consuming.
I now have a daughter at BYU and this way she can log in and keep updated on what's happening at home.
Also, I have been told time and time again, that people need to hear my story. During our cross-country bike trip 2 years ago, people kept telling me they wanted to hear my side of the story, not just my husband, Layne's. They would have received a very different perspective from me. Layne is a gifted writer and I felt intimidated because he is so much better at writing.
The biggest reason I am doing this is because I was told I need to. My personal revelation usually comes in the form of dreams and I had a dream where I was told that I need to tell my story on a blog. I have learned to listen and act on it when I have dreams like that.
One more thing. When our little princess Eirion died, I didn't speak at the funeral. Emotionally I couldn't handle it. I knew that I would cry so much that I wouldn't be able to speak. So sometimes I will write about Eirion and my memories of her from a mother's perspective.
I'm excited about writing this, so take a deep breath, and here we go!
I have never been good at keeping a journal. It has always seemed too time-consuming to me. I start, and intend to do well, then I get behind and then get overwhelmed and as a result, end up not doing anything. Maybe, since I can type this, it won't seem like it's too time consuming.
I now have a daughter at BYU and this way she can log in and keep updated on what's happening at home.
Also, I have been told time and time again, that people need to hear my story. During our cross-country bike trip 2 years ago, people kept telling me they wanted to hear my side of the story, not just my husband, Layne's. They would have received a very different perspective from me. Layne is a gifted writer and I felt intimidated because he is so much better at writing.
The biggest reason I am doing this is because I was told I need to. My personal revelation usually comes in the form of dreams and I had a dream where I was told that I need to tell my story on a blog. I have learned to listen and act on it when I have dreams like that.
One more thing. When our little princess Eirion died, I didn't speak at the funeral. Emotionally I couldn't handle it. I knew that I would cry so much that I wouldn't be able to speak. So sometimes I will write about Eirion and my memories of her from a mother's perspective.
I'm excited about writing this, so take a deep breath, and here we go!
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