Well, I blew it. I procrastinated and missed one opportunity, but it opened up another even better one. I was going to sign up for the Phoenix half-marathon, but by the time I finally got around to doing it, it was full.
I had been way-laid a bit by overtraining without enough recovery time in between which caused my ankles to hurt(a lot) and interrupted my training a bit. I guess I'm just getting old and don't recover as quickly as I once did. Anyway, I finally figured out how to prevent my ankles from hurting when I ran but decided that since I am a running novice I would just do the 10K. My daughter, Dani, however is determined to do the half-marathon. I got on the computer to sign her up and found out it was full. I tried to convince her to do the 10K with me, to no avail. She wants to do a half-marathon.
So, I got on the computer again to see what other options we had. I did a search and another half-marathon/10K popped up. This one was the same day, in Scottsdale, and sponsored by Ryan House. I looked up Ryan House and was impressed by what I read. They are an organization that gives support and help to families who have children with life-threatening illnesses. Because of our experience with Eirion, this is a cause close to my heart. The money you pay to run goes to help this organization.
I am running in memory of and in honor of Eirion. This race will be held March 3--the day before what would have been her first birthday. Fitting that I am running for her and to help an organization that will possibly help others with children like her. She gave us so many gifts, this is one that I can give her.
Tuesday, January 31, 2012
Thursday, January 12, 2012
I can do this!
I haven't posted for a very long time. The holiday season is crazy in this house and with 7 kids we keep busy. I need to do better, though.
In the new year, you think about the past year and look forward to the year to come. Last year was so incredibly hard, but we were also incredibly blessed. Although it was heartbreaking to lose Eirion, I'm so thankful for the time we got to have with her. I truly feel like that was Heavenly Father's gift to us. This sweet little spirit who wasn't expected to live past a few days was with us for 5 1/2 months. We got to have her in our home and she got to bond and be loved by us and all her siblings. Although I don't fully understand why she had to go I know that I will see her again and have the chance to raise her.
Looking ahead to this year I have a big benchmark to achieve(I don't like the word goal). In November my friend Dixie decided to run a half-marathon in March of 2012. She asked me if I would do it too. I told her that I would train with her but I wouldn't do the half-marathon. I have never liked running, but I needed to get back into exercising and I figured running with Dixie would be fun.
Well, we started and I discovered that the first mile was the hardest and after about a mile and a half it gets a little easier. So many times during that first mile I would think, I hate this, but I kept going. And it has become easier and I am getting to the point where I actually enjoy it. I am getting better and getting faster. We ran 8 miles last Saturday. My daughter, Dani, has also decided to run it. Best of all, through the cajoling and encouragement of my husband, family and friends, I have decided to do the half-marathon. I'm not running to win, I'm running just to finish. I just want to see if I can do it. It's something exciting to look forward to. Plus, I feel good.
I'm running in honor and memory of Eirion. I hope she'll be my own personal cheerleader and help spur me on to finish. She blessed our lives so much. This is my way of honoring her and the memories we have.
In the new year, you think about the past year and look forward to the year to come. Last year was so incredibly hard, but we were also incredibly blessed. Although it was heartbreaking to lose Eirion, I'm so thankful for the time we got to have with her. I truly feel like that was Heavenly Father's gift to us. This sweet little spirit who wasn't expected to live past a few days was with us for 5 1/2 months. We got to have her in our home and she got to bond and be loved by us and all her siblings. Although I don't fully understand why she had to go I know that I will see her again and have the chance to raise her.
Looking ahead to this year I have a big benchmark to achieve(I don't like the word goal). In November my friend Dixie decided to run a half-marathon in March of 2012. She asked me if I would do it too. I told her that I would train with her but I wouldn't do the half-marathon. I have never liked running, but I needed to get back into exercising and I figured running with Dixie would be fun.
Well, we started and I discovered that the first mile was the hardest and after about a mile and a half it gets a little easier. So many times during that first mile I would think, I hate this, but I kept going. And it has become easier and I am getting to the point where I actually enjoy it. I am getting better and getting faster. We ran 8 miles last Saturday. My daughter, Dani, has also decided to run it. Best of all, through the cajoling and encouragement of my husband, family and friends, I have decided to do the half-marathon. I'm not running to win, I'm running just to finish. I just want to see if I can do it. It's something exciting to look forward to. Plus, I feel good.
I'm running in honor and memory of Eirion. I hope she'll be my own personal cheerleader and help spur me on to finish. She blessed our lives so much. This is my way of honoring her and the memories we have.
Sunday, October 30, 2011
One final thought about Eirion
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). :)
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 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.
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