Saturday, May 19, 2012
4 am update
It's 4:05, and I was having a little trouble sleeping. Dave and I went to rest in the quiet room, I fell asleep for about two hours, then woke up thinking it was 8:20. Couldn't go back to sleep without checking on Lily. She's doing well. HR is still about the same. Temp too. When we left, she was at 24 breathes per minute on the machine. When I got here, they had her down to 16. They just moved her down again to 14. This is progress. So far, she's just getting fluids. They will start Pedialyte once the tube is out. She's quietly resting/sedated with little movements here and there.
I'm beginning to feel a little overwhelmed with all that's going on. I'm extremely touched by the amount of prayers and that's just building. I'm not complaining, just deeply touched.
Friday, May 18, 2012
Update from Surgery
Lily has been out of surgery for a while, but I wanted to be with her before posting. Surgery went well. It seems as if part of her bowels basically had what is similar to an elastic band around, causing the obstruction and also keeping blood flow from getting to that area. Basically, that area died, so they took out 10 cm worth of bowels. She's trying to come out of the anesthesia, but they have sedated her to keep her calm. She's intubated so she doesn't have to work at breathing and can focus on healing. She was trying to turn her head--naughty girl!--, hence the sedation. Heart rate is in the high 140s, which is a whole lot better than the 200 that we saw when I brought her in this morning. Temp is 37.9, which is better than the 38.5 I saw when they first brought her back from the OR. She's tried to take a few starting breaths on her own, but I think they want to keep her intubated until the morning at least so she doesn't have to work so hard. But they're going to let her dictate that. I'm not sure what her blood pressure is. I don't see it up at the moment, and I have no idea what the numbers mean anyway.
Thank you to all of you who have prayed for Lily, sent kind words, texted, visited, and/or watched Gabriel and/or Soleil. I apologize if I haven't responded. But know that your prayers have been felt, your words have comforted, your texts have been read, your visits have been a needed distraction, and your help with Gabriel and Soleil has given me peace knowing that they are in good hands. I am touched beyond words and can not say thank you enough.
As for the prayers. . .I must say that I had an overwhelming peace during her surgery. I know all the prayers weren't for our peace of mind, but knowing that the prayers were out there was so comforting. So, very humbly, I say thank you.
Thank you to all of you who have prayed for Lily, sent kind words, texted, visited, and/or watched Gabriel and/or Soleil. I apologize if I haven't responded. But know that your prayers have been felt, your words have comforted, your texts have been read, your visits have been a needed distraction, and your help with Gabriel and Soleil has given me peace knowing that they are in good hands. I am touched beyond words and can not say thank you enough.
As for the prayers. . .I must say that I had an overwhelming peace during her surgery. I know all the prayers weren't for our peace of mind, but knowing that the prayers were out there was so comforting. So, very humbly, I say thank you.
Prayers Needed
Lily has been admitted to the PICU. We're not sure what is going on. Yesterday, she was vomiting, so we thought it was a stomach virus. She had a high heart rate last night and this morning. A little uncomfortable and very lethargic last night, but obviously in pain this morning. I think they've ruled out appendicitis, but we think there may be some sort of bowel problem. Just not sure right now, but this is not the playful, little girl we're used to seeing. So please pray. I'll try to keep updates, but I'm pretty shocked and finding it hard to process everything. This is all so new to us.
Thursday, May 10, 2012
Surgery
Lily had her doctor's appointment today with the pediatric surgeon. Before her appointment, she had to have an upper GI done. The radiologist indicated that things looked good, but surprisingly, that Lily's stomach emptied quickly (even though she has motility issues) and that she refluxed (even though she's on two medicines for reflux). I left that appointment feeling good about Lily's hernia and thinking that maybe we'd avoided surgery.
Apparently, the surgeon didn't think the same thing. According to him, Lily's hernia is called a morgagni hernia, specifically. It's still a diaphragmatic hernia, he said, but that's all I know. I think I was in a little shock hearing that he wanted surgery and thinking how rushed it all felt, that I can't remember exactly what qualifies a hernia to be a morgagni hernia (after reading a little about it, it seems to be that it's on the right side of the diaphragm). It seems as if Lily's colon is going up into her chest cavity, and there's a risk of blood being cut off and that wouldn't be good, but the doctor believes that her colon is moving up and down, so sometimes a scan or x-ray will catch it. Sometimes not. So surgery it is. Luckily, this isn't urgent, so we have about a month before the surgery is scheduled.
So what's planned is that the doctor will go in laparoscopically to see what's happening (since her colon seems to be moving up and down). The repair will either require stitches or mesh, depending on the severity. I asked the doctor where this surgery was on a scale, and he said it's a pretty minor surgery.
It's not the surgery that bothers me as much as it is the anesthesia and Lily coming out of it. I keep going back to Lily's g-tube surgery and how it took her longer than normal to come out of the anesthesia. While Lily is bigger and stronger, it's still a concern.
We also learned today that the doctor believes that this has existed since birth. That was a surprise to me. I was afraid it was caused when she fell off the bed in Pennsylvania. If that's the case, it's pretty amazing that it's not bothered Lily. Plus, it seems as if dh's can be pretty severe and lifethreatening. That, in itself, is amazing that up to this point, Lily's has not been lifethreatening.
So the surgery is scheduled for June 8. I admit I'm a little anxious. Until then, I'm going to try to stay calm and focus on the moments we have together. There are so many of them, and they are so beautiful.
Apparently, the surgeon didn't think the same thing. According to him, Lily's hernia is called a morgagni hernia, specifically. It's still a diaphragmatic hernia, he said, but that's all I know. I think I was in a little shock hearing that he wanted surgery and thinking how rushed it all felt, that I can't remember exactly what qualifies a hernia to be a morgagni hernia (after reading a little about it, it seems to be that it's on the right side of the diaphragm). It seems as if Lily's colon is going up into her chest cavity, and there's a risk of blood being cut off and that wouldn't be good, but the doctor believes that her colon is moving up and down, so sometimes a scan or x-ray will catch it. Sometimes not. So surgery it is. Luckily, this isn't urgent, so we have about a month before the surgery is scheduled.
So what's planned is that the doctor will go in laparoscopically to see what's happening (since her colon seems to be moving up and down). The repair will either require stitches or mesh, depending on the severity. I asked the doctor where this surgery was on a scale, and he said it's a pretty minor surgery.
It's not the surgery that bothers me as much as it is the anesthesia and Lily coming out of it. I keep going back to Lily's g-tube surgery and how it took her longer than normal to come out of the anesthesia. While Lily is bigger and stronger, it's still a concern.
We also learned today that the doctor believes that this has existed since birth. That was a surprise to me. I was afraid it was caused when she fell off the bed in Pennsylvania. If that's the case, it's pretty amazing that it's not bothered Lily. Plus, it seems as if dh's can be pretty severe and lifethreatening. That, in itself, is amazing that up to this point, Lily's has not been lifethreatening.
So the surgery is scheduled for June 8. I admit I'm a little anxious. Until then, I'm going to try to stay calm and focus on the moments we have together. There are so many of them, and they are so beautiful.
Sunday, May 6, 2012
A Shocking Surprise
Lily had been doing so well with her vomiting. I believe it had been a good three weeks that we went vomit free. . .except she had started putting her fingers in her mouth and gagging herself and sometimes spitting up a little from that.
That was the trick she pulled on Thursday. I was in the other room and heard her doing her little gag cough, but by the time I made it into the living room, there was already a puddle of vomit on the floor, running down her face and pooling in her mouth.
As soon--and I mean AS SOON--as the episode had stopped, she was snotty and congested sounding. My fear was that she had aspirated on her vomit. I kept an eye on her that day, but it seemed like as the day wore on, she got worse. She even seemed a little blue around the lips at therapy, but when we got home, I checked her oxygen level, which was in her normal 98 - 100 range. Because of that, I decided to just keep an eye on her.
But as always, when the congestion is around, so is the vomiting, and sure enough, she started vomiting.
That, coupled with a little wheezing, took us to the doctor on Friday. She heard wheezing, did an RSV test just to be sure, and because that was negative, sent us to get Lily a chest x-ray to check for aspiration pneumonia.
At the end of the day, I got the call from the doctors office. No aspiration pneumonia, but. . .
a surprising discovery.
Lily had a few rib fractures and a diaphragmatic hernia. Both of us were quite surprised.
We think the rib fractures came from Philadelphia, when Lily fell off the bed. :(
As for the diaphragmatic hernia. . .I have no idea. It's new for Lily. She's had multiple ultrasounds and x-rays, but this is the first it's been seen. All the doctor could say was that it can be quite dangerous if you're born with it because the lungs haven't developed, but since Lily is three, her lungs should be developed and that should not be a problem. Still, she's referring us to the pediatric surgeon who follows Lily for her g-tube and to pulmonary. At least these two doctors are familiar with Lily. But I must admit that I'm a little worried. Just a little. I'm trying to remind myself that there's no reason to worry since I don't know any outcome as of yet. But prayers would be greatly appreciated.
As for school. . .we decided not to send Lily to school this year. There are only four weeks left, and we're a little concerned about the makeup of the class. Lily would be in a room of seven to eight four year olds (That's because she would be in the afternoon class. Three year olds make up the morning class.) Some of these children, from what I understand, have behavior issues, and I'm not so sure any of them are wheelchair bound. We're just not comfortable with that.
Instead, Lily is going to continue with her therapies here at home. And it may sound short-sighted of me, but honestly, in the grand scheme of Lily's little life, I don't think her educational development is as important as her physical development. And I don't think her physical development will be the focus in school. There it will be her educational development. Sure, if Lily knew her colors, that would be pretty spectacular, or if she knew the difference between a cat and a dog, let's say, that would be pretty spectacular. Again, in the grand scheme of her life, I just don't think that's the most important focus we should have. It doesn't mean we'll never send her to school, but it certainly makes us reconsider sending her to school when the environment doesn't seem to be conducive to her well-being. Of course, we want her to go to Pattison's anyway, but she wouldn't be able to start there until she's at least four, and since it's a charter school, if there are more applicants than there are spaces, they implement a lottery. The luck of the draw. Still, we hope.
But for now, there are other more important issues. At least we don't have to worry about aspiration pneumonia.
That was the trick she pulled on Thursday. I was in the other room and heard her doing her little gag cough, but by the time I made it into the living room, there was already a puddle of vomit on the floor, running down her face and pooling in her mouth.
As soon--and I mean AS SOON--as the episode had stopped, she was snotty and congested sounding. My fear was that she had aspirated on her vomit. I kept an eye on her that day, but it seemed like as the day wore on, she got worse. She even seemed a little blue around the lips at therapy, but when we got home, I checked her oxygen level, which was in her normal 98 - 100 range. Because of that, I decided to just keep an eye on her.
But as always, when the congestion is around, so is the vomiting, and sure enough, she started vomiting.
That, coupled with a little wheezing, took us to the doctor on Friday. She heard wheezing, did an RSV test just to be sure, and because that was negative, sent us to get Lily a chest x-ray to check for aspiration pneumonia.
At the end of the day, I got the call from the doctors office. No aspiration pneumonia, but. . .
a surprising discovery.
Lily had a few rib fractures and a diaphragmatic hernia. Both of us were quite surprised.
We think the rib fractures came from Philadelphia, when Lily fell off the bed. :(
As for the diaphragmatic hernia. . .I have no idea. It's new for Lily. She's had multiple ultrasounds and x-rays, but this is the first it's been seen. All the doctor could say was that it can be quite dangerous if you're born with it because the lungs haven't developed, but since Lily is three, her lungs should be developed and that should not be a problem. Still, she's referring us to the pediatric surgeon who follows Lily for her g-tube and to pulmonary. At least these two doctors are familiar with Lily. But I must admit that I'm a little worried. Just a little. I'm trying to remind myself that there's no reason to worry since I don't know any outcome as of yet. But prayers would be greatly appreciated.
As for school. . .we decided not to send Lily to school this year. There are only four weeks left, and we're a little concerned about the makeup of the class. Lily would be in a room of seven to eight four year olds (That's because she would be in the afternoon class. Three year olds make up the morning class.) Some of these children, from what I understand, have behavior issues, and I'm not so sure any of them are wheelchair bound. We're just not comfortable with that.
Instead, Lily is going to continue with her therapies here at home. And it may sound short-sighted of me, but honestly, in the grand scheme of Lily's little life, I don't think her educational development is as important as her physical development. And I don't think her physical development will be the focus in school. There it will be her educational development. Sure, if Lily knew her colors, that would be pretty spectacular, or if she knew the difference between a cat and a dog, let's say, that would be pretty spectacular. Again, in the grand scheme of her life, I just don't think that's the most important focus we should have. It doesn't mean we'll never send her to school, but it certainly makes us reconsider sending her to school when the environment doesn't seem to be conducive to her well-being. Of course, we want her to go to Pattison's anyway, but she wouldn't be able to start there until she's at least four, and since it's a charter school, if there are more applicants than there are spaces, they implement a lottery. The luck of the draw. Still, we hope.
But for now, there are other more important issues. At least we don't have to worry about aspiration pneumonia.
Wednesday, May 2, 2012
Bittersweet Birthday
We had such an AMAZING weekend! It started Friday. Dave and I and our friends Allison and Laban all went out to eat for my birthday. We had quite the caretakers for Gabriel, Lily, and Soleil--some of our church's youth group and the youth director and his assistant were our babysitters! We had been talking about letting the youth watch the kids, mainly so they could spend some time with Lily and have contact with a child with a disability. It was so wonderful to be able to give them that opportunity, and I'm happy to say that they and my kids had a good time!
Later that night, Lisa and Bruce and Joey (Trisomy 18) came over to spend the night so they could share Lily's special birthday celebration with us! They came from northern Georgia! Lisa and I stayed up until 3:00 in the morning talking! Whew! But what a beautiful family and what a spectacular daughter they have! Joey will be three in June, and she is such a cuddle bug!
Lily's party was exhausting, but it was such a joyous occasion! I cannot express how perfect Peaceful Way was in capturing the atmosphere we wanted for her party. A few people commented on the place and how it felt like God had His hands on it. That's the kind of place for us! We had at least 94 people in attendance, and the day was beautiful. How blessed we are to have so many people who love Lily! And how blessed we are to have the place donated for the use of Lily's party! And to make it even better, we had two Trisomy 18 families with us: Joey and her family and Kaylen and her family!
I thought that Sunday was going to be an ordinary day, but Dave had other plans. . .unbeknownst to me. His family was in town as was my mom and Rani (Autumn was already here), and we were supposed to go out to eat after church. But Dave wanted to stop by his school and show it to his sister and her girls. Little did I know that this was all a ploy to get me there because he had planned a surprise birthday party! But the biggest surprise was that my best friend, who lives in Florida, came up for it! And so many other friends from church and my mom's group and other areas of my life were there to celebrate. The day was perfect!
On Monday, I was still reeling from the excitement of the weekend. It was Lily's birthday, and that added to the joy. Then I got a text from my friend, Allison--the one we had just gone out to eat with on Friday, the one who was with us at Lily's party, and the one who helped Dave orchestrate my surprise party. Her sister-in-law went into premature labor, and they were trying to slow it down. Could I please pray for them? My prayers went up, and later that day, I got a text saying that their son, Bennett, was born, but things were touch and go. More prayers went up. A little later, I got a third text: little Bennett had gone to Heaven.
I was in shock. I was saddened that my friend had to go through this. I was saddened for her brother and his wife. Honestly, it was hard for me to wrap my head around the celebration of life that we had just had for Lily and the loss of life this family was mourning. It's still hard. It's in my nature to want to mend things when they go bad. Oh, how I want to just make it all better for this family with the snap of my fingers. But I have no magic wand. And I know that even though it hurts, and boy does it hurt, there will be a day when the pain begins to subside, and that's when you begin to feel God's tender touch. And you begin to realize that He's been there all along, and there is such beauty in knowing His comfort. And that helps the pain subside more. Because He is a loving God, and He is a gentle God, and He is a comforting God, and that is beautiful. Oh, so beautiful. That is grace, and that is what I pray this family is able to eventually feel. After the pain. Because there will be pain. . .because there is love.
I found this poem today, and although it starts out a little harsh, it ends with such gentleness and tenderness. The words just hug me so! It's from Kahlil Gibran's book The Prophet, and it's from the section On Pain.
Oh, how I wish I could offer this family comfort.
Later that night, Lisa and Bruce and Joey (Trisomy 18) came over to spend the night so they could share Lily's special birthday celebration with us! They came from northern Georgia! Lisa and I stayed up until 3:00 in the morning talking! Whew! But what a beautiful family and what a spectacular daughter they have! Joey will be three in June, and she is such a cuddle bug!
Lily's party was exhausting, but it was such a joyous occasion! I cannot express how perfect Peaceful Way was in capturing the atmosphere we wanted for her party. A few people commented on the place and how it felt like God had His hands on it. That's the kind of place for us! We had at least 94 people in attendance, and the day was beautiful. How blessed we are to have so many people who love Lily! And how blessed we are to have the place donated for the use of Lily's party! And to make it even better, we had two Trisomy 18 families with us: Joey and her family and Kaylen and her family!
I thought that Sunday was going to be an ordinary day, but Dave had other plans. . .unbeknownst to me. His family was in town as was my mom and Rani (Autumn was already here), and we were supposed to go out to eat after church. But Dave wanted to stop by his school and show it to his sister and her girls. Little did I know that this was all a ploy to get me there because he had planned a surprise birthday party! But the biggest surprise was that my best friend, who lives in Florida, came up for it! And so many other friends from church and my mom's group and other areas of my life were there to celebrate. The day was perfect!
On Monday, I was still reeling from the excitement of the weekend. It was Lily's birthday, and that added to the joy. Then I got a text from my friend, Allison--the one we had just gone out to eat with on Friday, the one who was with us at Lily's party, and the one who helped Dave orchestrate my surprise party. Her sister-in-law went into premature labor, and they were trying to slow it down. Could I please pray for them? My prayers went up, and later that day, I got a text saying that their son, Bennett, was born, but things were touch and go. More prayers went up. A little later, I got a third text: little Bennett had gone to Heaven.
I was in shock. I was saddened that my friend had to go through this. I was saddened for her brother and his wife. Honestly, it was hard for me to wrap my head around the celebration of life that we had just had for Lily and the loss of life this family was mourning. It's still hard. It's in my nature to want to mend things when they go bad. Oh, how I want to just make it all better for this family with the snap of my fingers. But I have no magic wand. And I know that even though it hurts, and boy does it hurt, there will be a day when the pain begins to subside, and that's when you begin to feel God's tender touch. And you begin to realize that He's been there all along, and there is such beauty in knowing His comfort. And that helps the pain subside more. Because He is a loving God, and He is a gentle God, and He is a comforting God, and that is beautiful. Oh, so beautiful. That is grace, and that is what I pray this family is able to eventually feel. After the pain. Because there will be pain. . .because there is love.
I found this poem today, and although it starts out a little harsh, it ends with such gentleness and tenderness. The words just hug me so! It's from Kahlil Gibran's book The Prophet, and it's from the section On Pain.
Much of your pain is self-chosen.
It is the bitter potion by which the physician
within you heals your sick self.
Therefore trust the physician, and drink
his remedy in silence and tranquility:
For his hand, though heavy and hard, is
guided by the tender hand of the Unseen,
And the cup he brings, though it burn
your lips, has been fashioned of the clay
which the Potter has moistened with His
own sacred tears.
It is the bitter potion by which the physician
within you heals your sick self.
Therefore trust the physician, and drink
his remedy in silence and tranquility:
For his hand, though heavy and hard, is
guided by the tender hand of the Unseen,
And the cup he brings, though it burn
your lips, has been fashioned of the clay
which the Potter has moistened with His
own sacred tears.
Oh, how I wish I could offer this family comfort.
Monday, April 30, 2012
Happy Birthday, Lily Grace!!!
Three years ago today, you entered this world and our lives were changed. You were so surrounded by love! We watched the clock as the seconds turned to minutes, and the minutes to hours, the hours to days, then months. Then a year. Before we knew it, a second year had passed us by.
And now a third.
I am in awe. I am so amazed by your strength, your courage, your determination. To not know, you know. You are so aware!
You are a big girl, now! You get to start school, and that terrifies me and excites me. Again, I am filled with these complex emotions that I struggle to deal with. This is not the trivial letting go of the bicycle that I'm dealing with here. I'm letting go of control over your well-being. I know you will be in good hands, but I'm still so very afraid.
You are beautiful and life-loving, and I feel so blessed and fortunate that you are a part of our family. And while it does have lots to do with the fact that you're still here despite statistics, it has more to do with the fact that you have taught us so much about loving life and appreciating it and being thankful for all those little things that tend to be overlooked. You have so much to teach the world! Not just about Trisomy 18, but about how life is supposed to be lived.
Thank you for teaching me so much. Thank you for fighting for yet another year. I am in deepest hopes of many more to come.
I love you, my little Lillikins!
Momma
And now a third.
I am in awe. I am so amazed by your strength, your courage, your determination. To not know, you know. You are so aware!
You are a big girl, now! You get to start school, and that terrifies me and excites me. Again, I am filled with these complex emotions that I struggle to deal with. This is not the trivial letting go of the bicycle that I'm dealing with here. I'm letting go of control over your well-being. I know you will be in good hands, but I'm still so very afraid.
You are beautiful and life-loving, and I feel so blessed and fortunate that you are a part of our family. And while it does have lots to do with the fact that you're still here despite statistics, it has more to do with the fact that you have taught us so much about loving life and appreciating it and being thankful for all those little things that tend to be overlooked. You have so much to teach the world! Not just about Trisomy 18, but about how life is supposed to be lived.
Thank you for teaching me so much. Thank you for fighting for yet another year. I am in deepest hopes of many more to come.
I love you, my little Lillikins!
Momma
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