Dylan had his surgery on Tuesday. We were supposed to check in at the hospital at 6:00 a.m. In some ways, it's really nice to be the first surgery scheduled for the day. In other ways, it makes it tricky. We worked things out with my mom to be to our house to help the kids get off to school and to tend Rachel.
Dylan was surprisingly happy when we got to the hospital. He knew why we were going so I thought he would get upset when we got there. He played with toys and did things he was asked without much question. He did start to get nervous at one point and kept saying he wanted to go home.
When they were wheeling him toward surgery after we kissed him and told him we would see him in a little bit, he cried out, "But don't go home!" I thought it was cute that he was worried we would go home while he was still there.
A little bit into the surgery, one of the nurses assisting called us in the waiting room to let us know that the cyst didn't appear to be a thyroglossal cyst like they had thought, but a dermoid cyst, which is much easier and less involved to remove. That was good news. Later when the doctor came out to talk to us, he said he saw no reason why Dylan would have to stay the night like we had been planning.
After spending some time in recovery (doesn't matter if they give Dylan anti-nausea medicine, he still hurls at least once after anesthesia), we were able to go home. Dylan perked right up on the way out of the hospital. Sitting in the car, waiting to go, he said to me, "It's morning." It was about 10:30. It had been very dark for the drive to the hospital, so Dylan hadn't realized it was morning.
It was easy to tell when Dylan needed more pain medicine that day and the next couple of days. He would hold his neck very still and move kind of stiffly. Once the pain medicine kicked in, he acted like nothing happened, so I let him go to preschool yesterday. Today he hasn't needed pain medicine at all, but I'm sure he will be even happier once the steri-strips come off.
I didn't think Dylan would feel well enough to go to preschool at all this week. Thought going to church this coming Sunday would be questionable. I'm glad he's doing so well and that his surgery is behind us.
I did get a call today from the doctor with the pathology report. Said it seems to be the dermoid cyst like they though, so nothing to worry about. Yay for good reports.
Friday, November 9, 2012
Quick Trip to Idaho
About a month ago, I mentioned to my mom how Molly had written a small story at school about taking a trip up to Idaho to visit her cousins. She wrote how it was a really long drive but how she had so much fun and hopes she gets to go again. We said it would be fun to take another quick trip up over UEA, which was coming up in the middle of the month. That chat set things in motion and we decided to go.
Jimmy stayed with Russ' parents for most of the trip. He had just gotten a leopard gecko and was worried about Russ taking care of it. Plus he didn't want to drive that long. We made good time heading there and so decided to wait until we got there for lunch, having left in the morning.
We had a good time visiting. We didn't go swimming that first day, but did the next. The pool wasn't as cold as I remembered it. Might have helped that the weather that weekend was cooler.
We spent time just hanging out at Stacey's house, which was interesting with my youngest two being afraid of dogs. They did eventually get brave enough to actually touch Ozzy, Stacey's Great Dane/Mastiff mix.
On Saturday we went to the open house for the Boise Temple. Rachel kept taking off and kids were excited to be with cousins, but overall it was a better experience than going to the Brigham City contractor's open house. I think counting the drive to a ward building, riding the bus to the temple, touring the temple, then the bus ride back to the ward building took less time than we stood waiting in line just to get in the Brigham City open house.
We drove home on Sunday. Emma sat by Rachel for the ride home and was very good with her. Played with her and kept her entertained for the 5+ hour ride. Rachel stayed awake until we were just a few minutes from home. It was nice that Russ had picked up Jimmy from his parent's house the day before so we didn't need to get him on our way home. After that drive, making an extra stop didn't sound fun.
All in all, it was a fun trip to visit my sister and her family.
Jimmy stayed with Russ' parents for most of the trip. He had just gotten a leopard gecko and was worried about Russ taking care of it. Plus he didn't want to drive that long. We made good time heading there and so decided to wait until we got there for lunch, having left in the morning.
We had a good time visiting. We didn't go swimming that first day, but did the next. The pool wasn't as cold as I remembered it. Might have helped that the weather that weekend was cooler.
We spent time just hanging out at Stacey's house, which was interesting with my youngest two being afraid of dogs. They did eventually get brave enough to actually touch Ozzy, Stacey's Great Dane/Mastiff mix.
On Saturday we went to the open house for the Boise Temple. Rachel kept taking off and kids were excited to be with cousins, but overall it was a better experience than going to the Brigham City contractor's open house. I think counting the drive to a ward building, riding the bus to the temple, touring the temple, then the bus ride back to the ward building took less time than we stood waiting in line just to get in the Brigham City open house.
We drove home on Sunday. Emma sat by Rachel for the ride home and was very good with her. Played with her and kept her entertained for the 5+ hour ride. Rachel stayed awake until we were just a few minutes from home. It was nice that Russ had picked up Jimmy from his parent's house the day before so we didn't need to get him on our way home. After that drive, making an extra stop didn't sound fun.
All in all, it was a fun trip to visit my sister and her family.
Going Diaperless
A few weeks ago I drove to Idaho with my mom to visit my sister. The day or two before we left, Rachel started to show a lot more interest in using the toilet than she had for a while. She stayed dry for the drive. I took her to the bathroom once during the trip and she happily used the toilet there. Her diapers stayed dry most of the time in Idaho with Rachel often saying she needed to go and running to the bathroom. Once we were home from the trip (I'll post about that momentarily), I put her in underwear. She hasn't used diapers since. She essentially trained herself. Man, I wish all of my kids had been this easy. As it is, 2 out of 6 isn't bad.
The last time I didn't have anyone in diapers was a brief month just before Dylan was born. I've gotta say, it's kind of nice walking past the diapers in the store and thinking how I don't need to buy them any more.
The last time I didn't have anyone in diapers was a brief month just before Dylan was born. I've gotta say, it's kind of nice walking past the diapers in the store and thinking how I don't need to buy them any more.
Sunday, October 7, 2012
Belated Birthday and Surgery Date Set
In my last post I talked about Dylan needing surgery. I met with the pediatric otolaryngologist whom I have taken some of the kids to before. He removed Molly's tonsils when she was two. Anyway, he agreed with the pediatrician's diagnosis but ordered an ultrasound of the cyst to be done at Primary Children's Medical Center. That was scheduled for the following Monday.
Dylan was very good for the ultrasound. He held very still and followed the technician's orders. Having seen many echo cardiograms for him, I knew what she was doing when blue and red flashed on the screen. She was checking to see if there was any blood flow to the cyst. There wasn't, which is a good thing. The radiologist came in and looked at the results of the ultrasound. She said that she couldn't say with 100% certainty that it is a thyroglossal cyst, but that's most likely what it is. It is atypical. Most are right on the midline where his is off to the side slightly. Plus it's not actually filled with pus like they usually are. Her exact word she used to describe it was "gunk." My thought to that was, "Of course it's atypical." Dylan doesn't seem to like to follow the norm.
Later the otolaryngologist called me and said he likes to have another doctor assist with the surgery, but the other doctor would be going in and out of town so he would have to get with him before they could schedule it. A few days later his secretary called to schedule it. Dylan has his surgery on Tuesday, November 6. He will be in the hospital over night and will have a drain that will stay in his neck a day or two. He will need to take things easy for several weeks. The surgery itself will take 1 1/2 to 2 hours.
A little bit of trivia for you. Twenty-eight years ago I was in the hospital after having my appendix removed. I was there over November 6th, which was the day Reagan was re-elected for his second term of office. Dylan will be in the hospital overnight on the upcoming elections. I wonder if he will think the same thing I did as my family watched the election coverage in the hospital room. "Isn't there anything else on?"
Friday, September 14, 2012
More Surgery for Dylan
If you scroll down to the previous post and look at the picture of Dylan, you will notice that he has a large adam's apple. Or that's what we figured it was. Thought it a bit strange that someone so young would have such a pronounced one (or one that showed up at all, even), but I never would remember to ask the doctor about it. Well, until yesterday, that is.
I took Dylan to the doctor yesterday and while there happened to mention the adam's apple to the nurse. She looked at it (have I mentioned that I really like this nurse? Almost like her better than the doctor) and kind of frowned after she felt it. She said she was going to go get the doctor to come in and look at it. At which point I knew it wasn't just a large adam's apple. When the doctor came in, he took one look at it and said that it was a thyroglossal cyst and needs to be removed. Which means that Dylan gets to have another surgery. Well, after we meet with the pediatric otolaryngologist.
If you google "thyroglossal cyst," one result that pulls up is a video on youtube of the surgery to remove the cyst. I can't bring myself to watch it at this point. I have watched the video there of open heart surgery to repair truncus arteriosus, but not until at least 3 years after Dylan had his. Another result was for a website explaining things about it. According to that website (which I would post a link to but I can't remember which it was), it can be a congenital defect that may not be seen until later. Also if it's large, it can cause breathing problems. Large was considered anything bigger than 1/2 inch. Without measuring, I would say Dylan's is bigger than that. But he has no breathing issues.
I take Dylan to the otolaryngologist near the end of next week. I will try to remember to update when I know more. I just feel bad for him that he will need more surgery. He was afraid all last night that I would take it out while he was asleep. He kept saying he likes it there.
I took Dylan to the doctor yesterday and while there happened to mention the adam's apple to the nurse. She looked at it (have I mentioned that I really like this nurse? Almost like her better than the doctor) and kind of frowned after she felt it. She said she was going to go get the doctor to come in and look at it. At which point I knew it wasn't just a large adam's apple. When the doctor came in, he took one look at it and said that it was a thyroglossal cyst and needs to be removed. Which means that Dylan gets to have another surgery. Well, after we meet with the pediatric otolaryngologist.
If you google "thyroglossal cyst," one result that pulls up is a video on youtube of the surgery to remove the cyst. I can't bring myself to watch it at this point. I have watched the video there of open heart surgery to repair truncus arteriosus, but not until at least 3 years after Dylan had his. Another result was for a website explaining things about it. According to that website (which I would post a link to but I can't remember which it was), it can be a congenital defect that may not be seen until later. Also if it's large, it can cause breathing problems. Large was considered anything bigger than 1/2 inch. Without measuring, I would say Dylan's is bigger than that. But he has no breathing issues.
I take Dylan to the otolaryngologist near the end of next week. I will try to remember to update when I know more. I just feel bad for him that he will need more surgery. He was afraid all last night that I would take it out while he was asleep. He kept saying he likes it there.
First Day of School and Molly's Birthday
This year school started the same day as Molly's birthday. Molly was thrilled. Really, she was. She loves school and was excited to think about starting again on her birthday. We had cake for her birthday the day before with Russ' family since we were all together for Labor Day. She wanted a Doctor Who cake. She did get one. Wasn't a great one, but she got one. Several things kept going wrong in attempting to make her cake, so it ended up being a picture of the TARDIS on her cake. With the extra cake from the previous 3 attempts at making cake (like I said, several things went wrong), I made cake balls shaped like Daleks. Had I had more time, they would have looked better. They tasted pretty good though. At any rate, I'm not posting pictures. Just don't feel like it. Molly was happy with her cake, at least. The day after her birthday we let Molly take one friend and went to the dollar theater and saw Madagascar 3. It also happened to be the day the city does a car show and free ice cream cones so we went a little early and got ice cream. Everyone had fun and we thought the movie was cute.
Anyway, back to the first day of school. Jimmy started the 8th grade. He's nearly as tall as I am (which isn't saying much), but I'm sure he will easily pass me up before the year's end. Someone had taken my camera and changed the settings on it, so his picture here isn't great. He wouldn't really let me take one once I fixed the settings.
Emma started 5th grade. That one is almost harder for me to believe than Jimmy's being in the 8th grade. She did tell me just the other day that she actually reads on a 7th grade level.
Molly started the 3rd grade. This is the first year she doesn't have her cousin in the same class with her, so she was a bit nervous but so far loves it. She brought home a paper today requesting permission to take part of an SEM study because she has shown creativity, ability, etc. She will meet with a small group weekly. In the group, they will be creating their own countries. She's excited about it.
Alyssa started the 2nd grade. She was a little sad to find out that a friend of hers wasn't in the same class, but seems to be doing well so far. She is actually the easiest to get to do homework. I think she likes knowing it's done and she doesn't have to worry about it.
Dylan started preschool two days after the others started back to school. He loved it. He was a little nervous about going but had a good time. Helps that he knows a couple of boys in his class. Rachel seems to miss him the most. They are very cute together. Rachel will give Dylan hugs and kisses if he's sad and he does the same if she's sad.
Anyway, back to the first day of school. Jimmy started the 8th grade. He's nearly as tall as I am (which isn't saying much), but I'm sure he will easily pass me up before the year's end. Someone had taken my camera and changed the settings on it, so his picture here isn't great. He wouldn't really let me take one once I fixed the settings.
Sunday, August 26, 2012
Why I Need Intermountain Healing Hearts
The path a parent of a child with a health issue can be a lonely one. Our friends and family offer love and support as they can (in most cases), but most often they don't know what it's like to go through it. Even though I am a twin, I don't feel qualified to give mothers of twins advice. I don't know what it's like to be a parent to twins.
At the first Heart Mom Luncheon held by Intermountain Healing Hearts, Margaret Cardall, mother of composer and pianist Paul Cardall, spoke of her journey of being a heart mom. She stated that she didn't know any other families dealing with congenital heart defects. In my recollection, she said at times she felt very much alone. The internet or groups like Intermountain Healing Hearts weren't around then, so she had no way of connecting with other heart moms.
Honestly, I haven't felt that loneliness. Not really even the day we found out that our unborn son would be born with a serious heart defect. My sister has a daughter with a hole in her heart that never has required surgery. I also have a close friend who has traveled the same path of a serious heart defect. One of the first things she did when she heard the news was to contact a lady who had been on the board of a support group for congenital heart defects. That lady informed her that the group they had been a part of really wasn't used any more, but let her know about Intermountain Healing Hearts. My friend then emailed me the information, and I didn't wait to contact the group to join.
The day we learned that Dylan would have a CHD was a hard one for me. I've probably mentioned on this blog before a bit about that day, so I am likely repeating things. Every time I would feel his movements, my stomach would sink and I would think "heart defect." We didn't know which type of heart defect he had at that point. I asked Russ to give me a Priesthood Blessing that night, and he did. It was a beautiful blessing where we both strongly felt comfort and peace from Heavenly Father. Neither one of us could hold back tears. The stress and almost panicky feelings left me completely. Later I would find myself wondering if I were in denial about his heart defect since I wasn't stressing about it.
I did have worries though. I wondered what would happen after he was born. We had been given a tour of the PICU at the children's hospital, and were told that likely we wouldn't even see him after he was born, that he would be taken directly to the NICU of the delivering hospital before transferred there. The nurse who gave us the tour also mentioned Intermountain Healing Hearts. She was glad when I told her we knew about the group and had joined.
I posted a few questions and was given knowledgeable answers. My favorite answer in regards to questions about older siblings was that we always say that these heart kids are special, and they are, but their siblings are just as special and go through the heart journey too.
After Dylan was born, we met other families whose children had recently had open heart surgery and who were also members of Intermountain Healing Hearts. We didn't have to find them, they had kept up with the group and found us. Others also visited us during his 18 days there. They knew what we were going through, they had done it themselves.
Even now, when we are in a more calm and settled section of this path (and hopefully it will be a while still before Dylan will need his next surgery), it's still nice to be part of the group. There's something comforting and amazing about being in a room full of other families going through the same struggles like I was earlier this month at the annual family camp. Even though we are all on the path of a heart family, our journeys are just a little bit different. Despite that, they know what it's like to have your child's cardiologist tell you that if your child were to get the flu, it could be very bad for him. And the worry when the flu does hit your house a short time later. (And for clarification, I'm talking about influenza, not typical stomach virus.)
I'm nearing the end of a two year term as vice-president on the governing board for Intermountain Healing Hearts. IHH has been such a blessing to me, that when it was announced that nominations and elections would be held for the governing board, I decided to go ahead and offer my nomination, despite having six children to take care of, one being a newborn baby. I wanted to be able to help how I could for this group that did so much for me. I hope I have.
Nominations are soon going to open for the next two year term on the governing board. They will open up the day of the Heart Walk, the biggest fundraiser for IHH. I think I will miss being on the governing board (yes, I realize I could run for governing board again, but think I will wait. Maybe in another two years). It was a big step outside of my comfort zone to do it, but I really have enjoyed my time serving. I sincerely hope that there are lots of people considering being a part of the governing board.
Going back to the title of my post as to why I need Intermountain Healing Hearts, even though I'm not currently struggling, I know the time will come when Dylan will need more surgery. I know that as with his first surgery, many of these families, who may be going through their own struggles, will think and pray for him. He will grow up attending events and getting to know other kids his own age who face the same issues he does. He will never have to feel alone in his journey. And that is what it's all about.
At the first Heart Mom Luncheon held by Intermountain Healing Hearts, Margaret Cardall, mother of composer and pianist Paul Cardall, spoke of her journey of being a heart mom. She stated that she didn't know any other families dealing with congenital heart defects. In my recollection, she said at times she felt very much alone. The internet or groups like Intermountain Healing Hearts weren't around then, so she had no way of connecting with other heart moms.
Honestly, I haven't felt that loneliness. Not really even the day we found out that our unborn son would be born with a serious heart defect. My sister has a daughter with a hole in her heart that never has required surgery. I also have a close friend who has traveled the same path of a serious heart defect. One of the first things she did when she heard the news was to contact a lady who had been on the board of a support group for congenital heart defects. That lady informed her that the group they had been a part of really wasn't used any more, but let her know about Intermountain Healing Hearts. My friend then emailed me the information, and I didn't wait to contact the group to join.
The day we learned that Dylan would have a CHD was a hard one for me. I've probably mentioned on this blog before a bit about that day, so I am likely repeating things. Every time I would feel his movements, my stomach would sink and I would think "heart defect." We didn't know which type of heart defect he had at that point. I asked Russ to give me a Priesthood Blessing that night, and he did. It was a beautiful blessing where we both strongly felt comfort and peace from Heavenly Father. Neither one of us could hold back tears. The stress and almost panicky feelings left me completely. Later I would find myself wondering if I were in denial about his heart defect since I wasn't stressing about it.
I did have worries though. I wondered what would happen after he was born. We had been given a tour of the PICU at the children's hospital, and were told that likely we wouldn't even see him after he was born, that he would be taken directly to the NICU of the delivering hospital before transferred there. The nurse who gave us the tour also mentioned Intermountain Healing Hearts. She was glad when I told her we knew about the group and had joined.
I posted a few questions and was given knowledgeable answers. My favorite answer in regards to questions about older siblings was that we always say that these heart kids are special, and they are, but their siblings are just as special and go through the heart journey too.
After Dylan was born, we met other families whose children had recently had open heart surgery and who were also members of Intermountain Healing Hearts. We didn't have to find them, they had kept up with the group and found us. Others also visited us during his 18 days there. They knew what we were going through, they had done it themselves.
Even now, when we are in a more calm and settled section of this path (and hopefully it will be a while still before Dylan will need his next surgery), it's still nice to be part of the group. There's something comforting and amazing about being in a room full of other families going through the same struggles like I was earlier this month at the annual family camp. Even though we are all on the path of a heart family, our journeys are just a little bit different. Despite that, they know what it's like to have your child's cardiologist tell you that if your child were to get the flu, it could be very bad for him. And the worry when the flu does hit your house a short time later. (And for clarification, I'm talking about influenza, not typical stomach virus.)
I'm nearing the end of a two year term as vice-president on the governing board for Intermountain Healing Hearts. IHH has been such a blessing to me, that when it was announced that nominations and elections would be held for the governing board, I decided to go ahead and offer my nomination, despite having six children to take care of, one being a newborn baby. I wanted to be able to help how I could for this group that did so much for me. I hope I have.
Nominations are soon going to open for the next two year term on the governing board. They will open up the day of the Heart Walk, the biggest fundraiser for IHH. I think I will miss being on the governing board (yes, I realize I could run for governing board again, but think I will wait. Maybe in another two years). It was a big step outside of my comfort zone to do it, but I really have enjoyed my time serving. I sincerely hope that there are lots of people considering being a part of the governing board.
Going back to the title of my post as to why I need Intermountain Healing Hearts, even though I'm not currently struggling, I know the time will come when Dylan will need more surgery. I know that as with his first surgery, many of these families, who may be going through their own struggles, will think and pray for him. He will grow up attending events and getting to know other kids his own age who face the same issues he does. He will never have to feel alone in his journey. And that is what it's all about.
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