The one thing that has always bugged me about Lily's g-tube is that it's just so. . .unnatural. Sure, the button itself is obviously unnatural, but the formula that she gets is what bothers me the most. I know it's developed to meet Lily's nutrition needs, but when funky ingredients that sound alien litter the ingredient list, I cringe. Plus, it kills me that Lily has no idea what she's missing when it comes to eating the good stuff like peaches and strawberries and cantaloupe.
For the past year, I've been wanting to try a more natural diet with Lily. Her nutritionist gave me information on what is called a blenderized diet. I did some research, and then put it all aside because I wanted to read the book Homemade Blended Formula Handbook before venturing out onto this road less traveled. But I kept putting off buying the book because it seemed rather expensive, and I didn't know if it had the information I was looking for.
I had read a post from the mom of Lilly, a little T-18 friend of Lily's, and how she was starting Lilly on a homemade blended formula diet. We exchanged a few emails, and I must say. . .I was inspired to get moving! So instead of purchasing the book, I decided to get it via interlibrary loan at our local library.
One of the supplies I kept hearing we'd need for this type of diet is the Vitamix blender. My mom works at a restaurant supply company, and she was able to get us one for free! It's quite an expensive blender, so that helped a lot; however, I hear that the company that makes the Vitamix offers a discount to families with children who have special feeding needs. This blender will come in very handy once we get to the point where we're blending Lily's food.
But, finally, I've taken that step and started the process. We're taking it very slowly: week one consisted of one tablespoon of Stage 1 baby food applesauce mixed with her morning feeding. We're in week two, and Lily is now getting two tablespoons throughout the day--one in her morning feeding and one in her 4:30 feeding. She's tolerating it very well. Next week, we'll move on to squash probably.
I've read wonderful things about this diet, and I hope that I can be yet another one to add positive comments about it. Since Lily nursed for about 13 months, she's not been solely formula fed. Still, I do worry a little whether or not this new diet will shock her system. But I'm recording a lot of information--feeds, calories, weight, how she's tolerating, how much she's going to the bathroom, etc.--and watching her closely.
Since she's been on this new diet, Lily has not vomited, and she's not been on any of her medication, including the erythromycin (spell check!!!) for motility. I can't necessarily credit the diet, though. When Lily was sick a few weeks ago, the doctor put her on a steroid and an antibiotic. I'm wondering if the steroid reduced some swelling that might have contributed to the vomiting in some way. We may go back to the Miralax--Lily did have a bowel movement FOUR times today, but they weren't the consistency I like to see--but we're first going to try to increase her liquids before going back to that. I may even try a little prune juice and see how that works.
As for physical improvements, Lily was down to 18 pounds, 8 ounces (with clothes) when she was sick. That was on 10/28. Last night we weighed her (without clothes), and she was up to 20.5 pounds. Keeping that food down really helps! Her hair seems to be growing, and she's now trying to get into a crawling position. She's just having trouble straightening out her arms. She's getting her behind off the floor, though. Maybe all of that is coincidental. Only time will tell.
I'm excited about this diet, though. I can't wait to introduce peaches and strawberries and cantaloupe to Lily one day. Like I said, we're taking this very slowly, but one day, she'll get a chance to have in her belly things I have no trouble pronouncing. It sounds healthier that way.
Showing posts with label Trisomy 18. Show all posts
Showing posts with label Trisomy 18. Show all posts
Wednesday, November 16, 2011
Friday, July 29, 2011
Bi-pap Blues & Other Goings On
Gosh, it's been a whirlwind of a month! Lily finished camp, we prepared for moving, I got sick, we moved, and now we're trying to get the house settled. Dave and Gabriel have started school, and I've been spoiled because Dave's parents are here helping. Sadly, they leave on Sunday.
I feel as if we've dealt with more with Lily this past month than we have her whole little two years. First, she had the unsuccessful sleep study where they decided to put her on oxygen. It made her so sad to put it on, and the tube kept falling out in the middle of the night when she turned on her side. By that time, Lily had another sleep study where they decided she needs to be on Bi-pap, so I decided to do without the oxygen for a few nights. A few nights turned into a few weeks due to paperwork. Apparently, the FDA doesn't approve Bi-pap for children as young as Lily, so extra paperwork had to be done. But one paper was looked over, so we had to wait for it to be completed and filed. On Thursday, we got the Bi-pap.
My grand dreams of Lily doing so well once more oxygen entered her little body while she sleeps have been crushed. Lily HATES the Bi-pap. It's bad! To the point where she makes herself vomit, she gets so upset. Then, the other morning, I got her out of bed to put her in her feeding chair and she stayed asleep. So I put the mask without the cap against her face. She immediately woke up and got extremely agitated. Her heartrate went up to 191! I took the mask off after about five minutes. It took her another five to calm down after I took the mask off. Then she vomited her feed. That was it for me. So now we're playing another waiting game for the doctor to call and see if he'll lower her flow rate to the lowest possible setting so we can increase it in baby steps. We're also looking for a mask that will fit her better. This mask touches her top lip and pulls it up against her teeth. The company is ordering a MiniMe, but they're saying it's bigger than the one she has. May, Vera's mom, recommended a different mask, and it looked like a good fit, but this company doesn't ship to the US.
In between all of that, Lily has been cutting teeth and had a bad diaper rash to accompany it. It's from the rash that she learned she can make herself so upset, she'll vomit. Little devil! She's been running a low grade fever since the beginning of this week, but it spiked to 102 last night. All along, I was thinking teeth, but I took her to the doctor today because of the spike, and it looks as if Lily has a UTI.
We had a pretty good time during camp with a whole lot less vomiting (even though her counselor, Lisa, had to deal with more blowouts), then we moved, and Lily started vomiting again. We're hoping it's because of the UTI. When you have a child on medicine to try to keep her from vomiting, and then she vomits, you wonder why you even bother with the medicine. Especially when you're waking up at 6:30 in the morning to give it to her. But yesterday was a vomit-free day, and today was looking good until the doctor made Lily gag on the tongue depressor. Lily's third feed was fine, and she's got one more to go. I'm really hoping for the best.
Something did dawn on me today, though, while at the doctor. They brought in a throw-up bowl when Lily was vomiting. My first thought was Why am I ruining my towels? All I need is one of these things. Maybe I'll pick up one from the store tomorrow. What took me so long to think of that one?
I've been horrible not posting, especially since I have some really cute camp pictures to share. But my goal when we moved was to not have any boxes in the house. So I didn't totally reach my goal, but I didn't do that bad of a job. Unfortunately, I'm a prioritizer, so when getting everything unpacked is one of my main priorities, it's hard to allow myself to stop and post. But I do have some really cute camp pictures to share. I'll get to it soon, I promise.
In the meantime, if you have any ideas how to get my little girl used to this Bi-pap machine, I'm listening. I can't make myself put it on her right now because I'm afraid if I leave the room she'll vomit with it on. In my mind, that risk outweighs Lily's need for oxygen.
I feel as if we've dealt with more with Lily this past month than we have her whole little two years. First, she had the unsuccessful sleep study where they decided to put her on oxygen. It made her so sad to put it on, and the tube kept falling out in the middle of the night when she turned on her side. By that time, Lily had another sleep study where they decided she needs to be on Bi-pap, so I decided to do without the oxygen for a few nights. A few nights turned into a few weeks due to paperwork. Apparently, the FDA doesn't approve Bi-pap for children as young as Lily, so extra paperwork had to be done. But one paper was looked over, so we had to wait for it to be completed and filed. On Thursday, we got the Bi-pap.
My grand dreams of Lily doing so well once more oxygen entered her little body while she sleeps have been crushed. Lily HATES the Bi-pap. It's bad! To the point where she makes herself vomit, she gets so upset. Then, the other morning, I got her out of bed to put her in her feeding chair and she stayed asleep. So I put the mask without the cap against her face. She immediately woke up and got extremely agitated. Her heartrate went up to 191! I took the mask off after about five minutes. It took her another five to calm down after I took the mask off. Then she vomited her feed. That was it for me. So now we're playing another waiting game for the doctor to call and see if he'll lower her flow rate to the lowest possible setting so we can increase it in baby steps. We're also looking for a mask that will fit her better. This mask touches her top lip and pulls it up against her teeth. The company is ordering a MiniMe, but they're saying it's bigger than the one she has. May, Vera's mom, recommended a different mask, and it looked like a good fit, but this company doesn't ship to the US.
In between all of that, Lily has been cutting teeth and had a bad diaper rash to accompany it. It's from the rash that she learned she can make herself so upset, she'll vomit. Little devil! She's been running a low grade fever since the beginning of this week, but it spiked to 102 last night. All along, I was thinking teeth, but I took her to the doctor today because of the spike, and it looks as if Lily has a UTI.
We had a pretty good time during camp with a whole lot less vomiting (even though her counselor, Lisa, had to deal with more blowouts), then we moved, and Lily started vomiting again. We're hoping it's because of the UTI. When you have a child on medicine to try to keep her from vomiting, and then she vomits, you wonder why you even bother with the medicine. Especially when you're waking up at 6:30 in the morning to give it to her. But yesterday was a vomit-free day, and today was looking good until the doctor made Lily gag on the tongue depressor. Lily's third feed was fine, and she's got one more to go. I'm really hoping for the best.
Something did dawn on me today, though, while at the doctor. They brought in a throw-up bowl when Lily was vomiting. My first thought was Why am I ruining my towels? All I need is one of these things. Maybe I'll pick up one from the store tomorrow. What took me so long to think of that one?
I've been horrible not posting, especially since I have some really cute camp pictures to share. But my goal when we moved was to not have any boxes in the house. So I didn't totally reach my goal, but I didn't do that bad of a job. Unfortunately, I'm a prioritizer, so when getting everything unpacked is one of my main priorities, it's hard to allow myself to stop and post. But I do have some really cute camp pictures to share. I'll get to it soon, I promise.
In the meantime, if you have any ideas how to get my little girl used to this Bi-pap machine, I'm listening. I can't make myself put it on her right now because I'm afraid if I leave the room she'll vomit with it on. In my mind, that risk outweighs Lily's need for oxygen.
Wednesday, June 29, 2011
Updates and Reaching Out
We had the GI appointment, and still, no answers. Lily's feeling a whole lot better, though, and her fever is gone. After her appointment, Lily had another abdominal ultrasound and then an abdominal x-ray. Then she had some labwork done.
So it's not the gall stones. The sludge is still there, but there was no evidence of inflammation. There also was no evidence of an obstruction. There was, however, evidence of constipation. And that could actually cause the vomiting if it puts pressure on Lily's stomach. Then there's the issue of possible reflux. Apparently, reflux can cause this sinus stuff that we've been dealing with for far too long. (The only reason reflux never crossed my mind was because Lily never acts like she's in pain.)
The Rx? More medicine than I think I know what to do with for the next two weeks. If this doesn't clear up, then the doctor is going to order a scan that lets them see if her stomach is emptying in a timely manner. So, for the next two weeks, we are to give her Zantac for the reflux and some other antacid type medicine, Miralax for the constipation (beginning with a high dose for the next few days to basically clean her out and then lowering it to an easier amount), and an enema to speed the cleaning out along.
What's interesting is that I've been wondering all along if Lily's vomiting had anything to do with allergies, since it began after we moved here (adding carpet and an indoor dog with the move). But after hearing the doctor today and thinking about what all has happened in the past year, it dawned on me that maybe. . .hopefully. . .Lily's vomiting has been related to constipation. Before we moved here, Lily was nursed, and we had no trouble with constipation. Right after we moved, she got her g-tube and was put on formula. Her stools changed. If only this were the answer! (But how horrible to have taken so long to figure it out. Poor Lily!) We'll see what the next few weeks bring.
Last night, I received an email from Connie, Mallorie's mom (see Our Little Teapot under Angel Friends in the right bar) asking me to help with reaching out to a mother who just adopted two special needs children from Eastern Europe (remember my post about Shaun from Reese's Rainbow?).
Actually, I'm getting ahead of myself because when I went to this mother's blog http://wronginalltherightways-travcat.blogspot.com/, the first thing I saw was this quote and I'm still getting chills from reading it: I'd like to ask God why He lets poverty and injustice exist, why there are so many orphans and why He does nothing about it, but I am afraid He would ask me the same question.
I honestly froze! I don't know if she wrote this, but this thought, that God might just ask me why I let poverty and injustice and orphans exist blows my mind. How ashamed I would be! How ashamed I am.
So immediately, I was hooked. And Connie's plea to help her reach out causes me now to share this with you.
For time's sake (and it must be short because I'm terribly tired), I'll just share this blog that gives a brief explanation of the need:
http://covenantbuilders.blogspot.com/2011/06/family-in-need.html
And this blog, written by someone else who has gone through a similar experience, gives more specifics. This mother is spearheading the movement to help Catherine. http://carringtonscourage.blogspot.com/
If you get a chance, take a look at these blogs. They are heartbreaking. They are compelling. They dare me to move.
So it's not the gall stones. The sludge is still there, but there was no evidence of inflammation. There also was no evidence of an obstruction. There was, however, evidence of constipation. And that could actually cause the vomiting if it puts pressure on Lily's stomach. Then there's the issue of possible reflux. Apparently, reflux can cause this sinus stuff that we've been dealing with for far too long. (The only reason reflux never crossed my mind was because Lily never acts like she's in pain.)
The Rx? More medicine than I think I know what to do with for the next two weeks. If this doesn't clear up, then the doctor is going to order a scan that lets them see if her stomach is emptying in a timely manner. So, for the next two weeks, we are to give her Zantac for the reflux and some other antacid type medicine, Miralax for the constipation (beginning with a high dose for the next few days to basically clean her out and then lowering it to an easier amount), and an enema to speed the cleaning out along.
What's interesting is that I've been wondering all along if Lily's vomiting had anything to do with allergies, since it began after we moved here (adding carpet and an indoor dog with the move). But after hearing the doctor today and thinking about what all has happened in the past year, it dawned on me that maybe. . .hopefully. . .Lily's vomiting has been related to constipation. Before we moved here, Lily was nursed, and we had no trouble with constipation. Right after we moved, she got her g-tube and was put on formula. Her stools changed. If only this were the answer! (But how horrible to have taken so long to figure it out. Poor Lily!) We'll see what the next few weeks bring.
Last night, I received an email from Connie, Mallorie's mom (see Our Little Teapot under Angel Friends in the right bar) asking me to help with reaching out to a mother who just adopted two special needs children from Eastern Europe (remember my post about Shaun from Reese's Rainbow?).
Actually, I'm getting ahead of myself because when I went to this mother's blog http://wronginalltherightways-travcat.blogspot.com/, the first thing I saw was this quote and I'm still getting chills from reading it: I'd like to ask God why He lets poverty and injustice exist, why there are so many orphans and why He does nothing about it, but I am afraid He would ask me the same question.
I honestly froze! I don't know if she wrote this, but this thought, that God might just ask me why I let poverty and injustice and orphans exist blows my mind. How ashamed I would be! How ashamed I am.
So immediately, I was hooked. And Connie's plea to help her reach out causes me now to share this with you.
For time's sake (and it must be short because I'm terribly tired), I'll just share this blog that gives a brief explanation of the need:
http://covenantbuilders.blogspot.com/2011/06/family-in-need.html
And this blog, written by someone else who has gone through a similar experience, gives more specifics. This mother is spearheading the movement to help Catherine. http://carringtonscourage.blogspot.com/
If you get a chance, take a look at these blogs. They are heartbreaking. They are compelling. They dare me to move.
Tuesday, June 28, 2011
No Camp Again
Strangely, we were hoping that Lily had a UTI, but the results came back today, and no UTI. I know that sounds good, but that also means what is it?! She's vomiting, running a low grade fever, having trouble getting comfortable, and occasionally, making a moaning/whining sound. Last night, when I went to her room to feed her, she had vomited in bed a greenish colored something that looked like it had strings of blood in it. Then, as I was feeding her in bed, she vomited. I got her out of bed and rocked her in the chair, and she just made that moaning/whining sound and tossed and turned. We tried feeding her again, and she vomited again. Dave went and got some Pedialyte but only gave her about 2 ounces. Luckily, she kept that down. A few hours later, he gave her another ounce, which she kept down.
Needless to say, we decided to keep her home from camp again today.
We've been slowing down the feeds and feeding less each time. I started out with 3 ounces this morning and gave her two more a few hours later. Again, she kept that down, but when Dave fed her, she vomited. I know she's lost a little weight; she just feels so. . .small. But her demeanor was a whole lot better today. It's so frustrating to not know what's going on.
Perhaps we should have taken her to the doctor today, but she has an appointment with a new doctor, the GI, tomorrow. We were mainly to talk about the gall stones she has, but I think I'm going to move the conversation quickly over to her vomiting, especially this new episode of it.
It worries me a little, fearing that maybe Lily might be going through what her friend, Rebekah, went through. (You can read her story if you look in the right side panel at Rebekah Faith--Redefining "Incompatible with Life"--June 2, 2011.) What if we're dealing with an obstruction of some sort? I don't want to over-diagnose her (like I have the knowledge to diagnose her anyway), but I also don't want to miss out on some type of hidden opportunity.
She's sleeping soundly right now. She seems fine when she sleeps, but the little thing didn't have much of a nap today. She's probably exhausted.
We'll see what tomorrow brings. It's very hard to get in to see this GI, so luckily, the appointment came at just the right time. But if you don't mind, would you please give a quick prayer for Lily?
Needless to say, we decided to keep her home from camp again today.
We've been slowing down the feeds and feeding less each time. I started out with 3 ounces this morning and gave her two more a few hours later. Again, she kept that down, but when Dave fed her, she vomited. I know she's lost a little weight; she just feels so. . .small. But her demeanor was a whole lot better today. It's so frustrating to not know what's going on.
Perhaps we should have taken her to the doctor today, but she has an appointment with a new doctor, the GI, tomorrow. We were mainly to talk about the gall stones she has, but I think I'm going to move the conversation quickly over to her vomiting, especially this new episode of it.
It worries me a little, fearing that maybe Lily might be going through what her friend, Rebekah, went through. (You can read her story if you look in the right side panel at Rebekah Faith--Redefining "Incompatible with Life"--June 2, 2011.) What if we're dealing with an obstruction of some sort? I don't want to over-diagnose her (like I have the knowledge to diagnose her anyway), but I also don't want to miss out on some type of hidden opportunity.
She's sleeping soundly right now. She seems fine when she sleeps, but the little thing didn't have much of a nap today. She's probably exhausted.
We'll see what tomorrow brings. It's very hard to get in to see this GI, so luckily, the appointment came at just the right time. But if you don't mind, would you please give a quick prayer for Lily?
Wednesday, June 22, 2011
Camp--Days Two and Three
Lily's having a great time at camp!
Yesterday, she went horseback riding! I was envisioning Lily being held by two therapists, sitting straight up on the back of a horse. Instead, they placed her across the horse's back on her tummy. Not what I expected, but I'm not complaining. I'm glad Lily got the experience. She spent pretty much the whole day at the barn, so it wasn't a very busy day.
Today, Lily learned about insects. Again, they began the day with a morning walk. And, again, Lily spent some time in her stander. But she also had music therapy, read The Very Hungry Caterpillar, painted, decorated a flower pot, and participated in food tasting. (She tasted strawberries, pears, and apples, but Lisa, her camp counselor, said she only liked the apples.)
Both yesterday and today Lily vomited during lunch. Poor Lisa! But as fortune would have it, Lily's OT was visiting camp today and was there when it happened. She asked Lisa how fast she was feeding Lily. Lisa told her that she was giving Lily 3 ounces and then waiting 10 minutes and then giving her the rest. Brenda then asked her how quickly it was going, to which Lisa replied pretty quickly. Ah ha! We think (no, we hope!) we found the problem! It seems the slower we feed Lily, the better she holds it in. Not always so, but usually we find that's the case.
So two more good days at camp overall. Looking at all of the activities they are doing, I think I'm going to try to incorporate similar ones into Lily's day once camp is over. By then, Gabriel will be beginning school, so it'll be a little easier to do so. Besides, with Gabriel in school, I think I'm going to need a little more activity to keep me busy!
Yesterday, she went horseback riding! I was envisioning Lily being held by two therapists, sitting straight up on the back of a horse. Instead, they placed her across the horse's back on her tummy. Not what I expected, but I'm not complaining. I'm glad Lily got the experience. She spent pretty much the whole day at the barn, so it wasn't a very busy day.
Today, Lily learned about insects. Again, they began the day with a morning walk. And, again, Lily spent some time in her stander. But she also had music therapy, read The Very Hungry Caterpillar, painted, decorated a flower pot, and participated in food tasting. (She tasted strawberries, pears, and apples, but Lisa, her camp counselor, said she only liked the apples.)
Both yesterday and today Lily vomited during lunch. Poor Lisa! But as fortune would have it, Lily's OT was visiting camp today and was there when it happened. She asked Lisa how fast she was feeding Lily. Lisa told her that she was giving Lily 3 ounces and then waiting 10 minutes and then giving her the rest. Brenda then asked her how quickly it was going, to which Lisa replied pretty quickly. Ah ha! We think (no, we hope!) we found the problem! It seems the slower we feed Lily, the better she holds it in. Not always so, but usually we find that's the case.
So two more good days at camp overall. Looking at all of the activities they are doing, I think I'm going to try to incorporate similar ones into Lily's day once camp is over. By then, Gabriel will be beginning school, so it'll be a little easier to do so. Besides, with Gabriel in school, I think I'm going to need a little more activity to keep me busy!
Friday, June 26, 2009
Incredible
The first definition from Merriam-Webster's entry of incredible is "too extraordinary and improbable to be believed." The second is "amazing, extraordinary." I have something incredible to share with you. I'll let you determine exactly which definition you'd like to apply to what I'm about to share with you.
Lily nursed tonight.
Good night.
Lily nursed tonight.
Good night.
Tuesday, June 23, 2009
Little Oliver
I am so sad to say that little Oliver was born into Heaven on Sunday. Lo siento. This is never easy to hear. His mother, Shannon, is an incredible woman. She emailed me (and a few other mommies) to tell us what had happened. She also shared with us that she had a "beautiful peace" about her during the delivery. Thank you for taking the time to pray for her and her family. I know it brought much comfort to her. Thank you for sending your prayers out for people you don't even know. It just means so much to us.
Friday, June 19, 2009
Taking advantage of naptime
Where's the time to blog these days? I wish there was just a little more of it to at least post how Lily's doctor's appointment went. I can't say it went all that badly. He wasn't very impressed with her weight gain--she's now up to 5 pounds 14 ounces--, but he was very impressed with how much she was moving. I'm not sure he's fond of us bottle feeding her, but he didn't suggest against it. There was a little scare. After the appointment, Dave said that he checked on his paper "Failure to thrive." With the weight issue, I took that to mean that she was not doing well, but after speaking to the hospice nurse, I felt better. She said that when a baby doesn't have a "normal" weight gain, it's considered failure to thrive. That has nothing to do with life expectancy necessarily. Whew!
But considering weight. And normal. What is normal anyway? I read somewhere (although I can't find it now) that the average weight gain for a baby with T-18 is 2 ounces per week. If that's the case, Lily is right on par. She's gained exactly two ounces each week. According to her condition, I don't consider that failing to thrive.
Luckily, we didn't have to go for the sweat test after all. The doctor's office called and said that the second PKU screening came back fine so that wasn't necessary. Still, could Dave or I be a carrier for cystic fibrosis? We're considering genetic testing in the event we decide to have another child. I guess that would show up then.
Things are pretty stressful around here these days. Lily is eating roughly ever 3 hours now. It takes about an hour to feed her (that includes pumping, feeding, and sitting up for about 20 minutes after feeding), so I feel as if I now have a two hour break. We're looking at buying another house, so getting this house prepared for selling feels like a nightmare. I'm running on very little sleep because I don't have much discipline when it comes to going to bed early. We've either had a doctor's appointment or someone over to discuss Lily and her condition every day this week. Good thing we had a relaxing vacation last week. I'm thinking maybe we need another one! But things seem to be going well, so I really shouldn't be complaining. I'm trying very hard to keep a positive perspective.
Oh, and please pray for my friend Shannon. She goes in on Sunday to begin preparing her for Baby Oliver's arrival. Oliver also has T-18, and there's an issue with his cord. Also, Oliver has hypoplastic left heart syndrome. Shannon has emailed me and said that she's having a peace beyond understanding. I'm so glad in these final moments that she's able to enjoy Oliver and his kicking. Thank you for taking the time to pray for her!
But considering weight. And normal. What is normal anyway? I read somewhere (although I can't find it now) that the average weight gain for a baby with T-18 is 2 ounces per week. If that's the case, Lily is right on par. She's gained exactly two ounces each week. According to her condition, I don't consider that failing to thrive.
Luckily, we didn't have to go for the sweat test after all. The doctor's office called and said that the second PKU screening came back fine so that wasn't necessary. Still, could Dave or I be a carrier for cystic fibrosis? We're considering genetic testing in the event we decide to have another child. I guess that would show up then.
Things are pretty stressful around here these days. Lily is eating roughly ever 3 hours now. It takes about an hour to feed her (that includes pumping, feeding, and sitting up for about 20 minutes after feeding), so I feel as if I now have a two hour break. We're looking at buying another house, so getting this house prepared for selling feels like a nightmare. I'm running on very little sleep because I don't have much discipline when it comes to going to bed early. We've either had a doctor's appointment or someone over to discuss Lily and her condition every day this week. Good thing we had a relaxing vacation last week. I'm thinking maybe we need another one! But things seem to be going well, so I really shouldn't be complaining. I'm trying very hard to keep a positive perspective.
Oh, and please pray for my friend Shannon. She goes in on Sunday to begin preparing her for Baby Oliver's arrival. Oliver also has T-18, and there's an issue with his cord. Also, Oliver has hypoplastic left heart syndrome. Shannon has emailed me and said that she's having a peace beyond understanding. I'm so glad in these final moments that she's able to enjoy Oliver and his kicking. Thank you for taking the time to pray for her!
Monday, June 15, 2009
Encouraging news
Lily had a modified barium swallow study today to see if she aspirates while drinking her bottle. Nothing much to post about that except to say that it went very well and the speech pathologist encouraged us to continue feeding her with the bottle. Lily is drinking the proper way, and there was one episode of "penetration" of the milk, but it didn't go down into the lungs. Still, we are to watch Lily while she eats to make sure nothing gets down into her lungs, for there is danger of pneumonia if it does. (And I'm happy to say that Lily has increased her intake to 70 ml, but we think she wants more!) Amazing!
We have a doctor's appointment tomorrow, basically to check for weight, but I'm sure he'll listen to her heart, too. Then, on Wednesday, Lily goes for a sweat test to check for cystic fibrosis. I'm not sure of the details, but apparently, either Dave or I is a carrier of that gene. We're hoping for the best because that would be quite a blow--as if having T-18 isn't enough for her to deal with.
We have a doctor's appointment tomorrow, basically to check for weight, but I'm sure he'll listen to her heart, too. Then, on Wednesday, Lily goes for a sweat test to check for cystic fibrosis. I'm not sure of the details, but apparently, either Dave or I is a carrier of that gene. We're hoping for the best because that would be quite a blow--as if having T-18 isn't enough for her to deal with.
Friday, June 12, 2009
Our little traveler
Lily has been on vacation! She's been hiking in the Smoky Mountains where she saw a bear and rode a choo-choo train with Gabriel and her mommy. She wanted to ride the go-carts with her daddy, but she wasn't quite tall enough. Tonight, she gets to go to the Dixie Stampede and hopefully will see some horses. She's spent a good bit of time relaxing in the room, but it's been nice spending time with Grandma and the aunts, uncles, and cousins. And she's been doing all of this without feeding tube!
We've been giving Lily a bottle here and there and supplementing with the tube anything that she wouldn't take on her own. Before we left, she had taken 3, maybe 4, full bottles. Here, she took all but one full bottle, and the one bottle she didn't fully take had maybe 20 ml left, so she had that through her tube. That was Tuesday night. Early Wednesday morning when I was feeding her, I smelled a weird smell. I couldn't figure out what it was. I was smelling her, her blanket. . .even myself. :) When I put her in bed with me, trying to calm her and get her back to sleep, I noticed that it was the tube that smelled. I could not imagine letting ANY more liquid go through that tube, as bad as it smelled, so Dave pulled the tube out, and Lily has gone without tube since then. She's such a champ! The other morning, she ate at one, but didn't wake up until 8:30. . . and I had to wake her up. It was nice to get some extra sleep, but I have to admit that I woke up afraid to check on her. But she was there and I said a quick "thank you" to God.
The feeding issue isn't resolved. Lily goes on Monday to have a modified barium swallow study done to see if she's aspirating. We feed her without tube, so I'm hoping that she's not aspirating now while she eats. Sometimes she does choke a little. I hope that's not what's happening. But the speech pathologist says that even if she's aspirating, she can still learn to take milk from a bottle. That tube is such a nuisance, so I hope we don't have to put it back in. But as much of a nuisance that it is, if it is the way we have to feed her, so be it.
We've been giving Lily a bottle here and there and supplementing with the tube anything that she wouldn't take on her own. Before we left, she had taken 3, maybe 4, full bottles. Here, she took all but one full bottle, and the one bottle she didn't fully take had maybe 20 ml left, so she had that through her tube. That was Tuesday night. Early Wednesday morning when I was feeding her, I smelled a weird smell. I couldn't figure out what it was. I was smelling her, her blanket. . .even myself. :) When I put her in bed with me, trying to calm her and get her back to sleep, I noticed that it was the tube that smelled. I could not imagine letting ANY more liquid go through that tube, as bad as it smelled, so Dave pulled the tube out, and Lily has gone without tube since then. She's such a champ! The other morning, she ate at one, but didn't wake up until 8:30. . . and I had to wake her up. It was nice to get some extra sleep, but I have to admit that I woke up afraid to check on her. But she was there and I said a quick "thank you" to God.
The feeding issue isn't resolved. Lily goes on Monday to have a modified barium swallow study done to see if she's aspirating. We feed her without tube, so I'm hoping that she's not aspirating now while she eats. Sometimes she does choke a little. I hope that's not what's happening. But the speech pathologist says that even if she's aspirating, she can still learn to take milk from a bottle. That tube is such a nuisance, so I hope we don't have to put it back in. But as much of a nuisance that it is, if it is the way we have to feed her, so be it.
Tuesday, June 2, 2009
Our little trooper
Just a quick note to share that just now Lily finished almost 60 ml of her BOTTLE. Not the pump. Her bottle. How much does Lily usually take? 60 ml!!!! No pump or syringe before going to bed tonight! Way to go Lily!
(I told you she amazes me every day!)
(I told you she amazes me every day!)
Sunday, May 31, 2009
Amazed
I've contemplated sharing this incident that happened the other night--there's an intimacy about it that made me wonder if I should share, but it was also an absolutely beautiful moment that I can't help but sharing.
Lily is spoiled, I'll not lie. We gladly spoil her. Couple that with the fact that I'm exhausted, and you have a baby who cries in the night and gets put in the bed with mommy and daddy. I just turn the bathroom light on and position her in the crook of my arm so she can look at the light. She's held (just like she wants to be) and occupied (just like I want her to be) and I sleep (just like I want to do).
Early the other morning (Lily was in the bed with us), I awoke to her grunting. I moved her so that she was about a foot away from me, and I turned myself on my side so that I was facing her, but there was enough space in between us. Like I said, about a foot. I stayed awake because she kept grunting. After a while, she had nuzzled her sweet little self right up against me. Her little head kept moving back and forth. She nuzzed some more. Now, I did not have a shirt on, and before long, she had latched on to me (all by herself!) and laid perfectly still and fell asleep.
I tell you this because Lily's never expressed interest in nursing. Every ounce of breast milk that she's gotten has been pumped into a bottle and is either taken that way or put into the bag to be pumped into her. It amazes me that this little one month old was able to move herself and find me. It amazes me that she latched on. It amazes me that I was able to comfort her directly in that way. I'm telling you, this little girl amazes me every day. It was such a beautiful moment.
Lily is spoiled, I'll not lie. We gladly spoil her. Couple that with the fact that I'm exhausted, and you have a baby who cries in the night and gets put in the bed with mommy and daddy. I just turn the bathroom light on and position her in the crook of my arm so she can look at the light. She's held (just like she wants to be) and occupied (just like I want her to be) and I sleep (just like I want to do).
Early the other morning (Lily was in the bed with us), I awoke to her grunting. I moved her so that she was about a foot away from me, and I turned myself on my side so that I was facing her, but there was enough space in between us. Like I said, about a foot. I stayed awake because she kept grunting. After a while, she had nuzzled her sweet little self right up against me. Her little head kept moving back and forth. She nuzzed some more. Now, I did not have a shirt on, and before long, she had latched on to me (all by herself!) and laid perfectly still and fell asleep.
I tell you this because Lily's never expressed interest in nursing. Every ounce of breast milk that she's gotten has been pumped into a bottle and is either taken that way or put into the bag to be pumped into her. It amazes me that this little one month old was able to move herself and find me. It amazes me that she latched on. It amazes me that I was able to comfort her directly in that way. I'm telling you, this little girl amazes me every day. It was such a beautiful moment.
Thursday, May 28, 2009
The cardiologist appointment
I don't know how to begin telling about today's cardiologist appointment other than to say that Lily does have a VSD. As I said earlier, this is basically a hole in the heart that allows blood from one chamber to enter into another chamber that it's not supposed to enter. I guess in "normal" children who have one, this hole closes by itself. In children with T-18, it doesn't and causes congestive heart failure. As scary as this sounds, the doctor has given us hope.
The cardiologist puts VSDs into one of three categories: big, moderate, and little. Lily's is big, but it acts moderate. It acts moderate for two reasons: first, it is quite high up in the chamber wall; second, tissue has already begun to form (he believes it began in utero), and he believes it has the potential to continue "growing" to close the hole.
Once again, we find ourselves not knowing--the main characteristic of the pregnancy. Boy does this little girl have something to teach us! As always, we are listening to her. We have chosen comfort care for Lily. That means we won't pursue aggressive measures to treat this VSD if it does not close on its own. Our cardiologist advocates the same measures. It was all I could do not to cry when he told us how once, when he was younger, he made a family's life miserable because he choose aggressive means for their child. There was so much regret in his voice, and to think that this man carried that burden on his shoulders was heartbreaking. As cruel as some of you may think this choice sounds, I once again feel that we were led to this doctor. We had changed our appointment from yesterday, and that meant we were to see a different doctor, the one we saw today. It was so comforting to hear him say that Lily's VSD could be a blessing from God due to the tissue and its position.
So it's very possible that new meaning has been added to my definition of "miracle." I'm constantly looking!
The cardiologist puts VSDs into one of three categories: big, moderate, and little. Lily's is big, but it acts moderate. It acts moderate for two reasons: first, it is quite high up in the chamber wall; second, tissue has already begun to form (he believes it began in utero), and he believes it has the potential to continue "growing" to close the hole.
Once again, we find ourselves not knowing--the main characteristic of the pregnancy. Boy does this little girl have something to teach us! As always, we are listening to her. We have chosen comfort care for Lily. That means we won't pursue aggressive measures to treat this VSD if it does not close on its own. Our cardiologist advocates the same measures. It was all I could do not to cry when he told us how once, when he was younger, he made a family's life miserable because he choose aggressive means for their child. There was so much regret in his voice, and to think that this man carried that burden on his shoulders was heartbreaking. As cruel as some of you may think this choice sounds, I once again feel that we were led to this doctor. We had changed our appointment from yesterday, and that meant we were to see a different doctor, the one we saw today. It was so comforting to hear him say that Lily's VSD could be a blessing from God due to the tissue and its position.
So it's very possible that new meaning has been added to my definition of "miracle." I'm constantly looking!
Wednesday, May 27, 2009
Prayer requests
If I may ask for a few prayer requests. . .
*Lily's cardiologist appointment is tomorrow. Unless it is just a consultation, which I'm not really sure of, we should find out if anything is wrong with Lily's heart. If nothing is wrong, the doctor says we could find ourselves with 10 to 12 years with Lily.
*There's a girl I've been emailing back and forth for a while. Laurie is her name. Laurie is pregnant with a little girl who has Trisomy 18. This is her first child. If Little Toot doesn't get here by next week, the doctors will induce on June 2. Toot has a VSD (hole in her heart) and cysts on her brain. I know the emotional turmoil that I went through before Lily was born. I hate to think what all Laurie is going through, and my heart breaks for her.
*Another girl I've emailed back and forth, Shannon, is pregnant with a little boy, Oliver, who has Trisomy 18. She's due in June. She, too, is a first-time mother.
*Annabel Grace is having surgery on her bowel on June 4. I swear, this little girl's smile melts my heart!
I ask for these prayer requests because I know I have some wonderful people out there who are fabulous "prayer warriors." Just knowing that they were praying and cheering for Lily gave me so much comfort. May those on this prayer list be comforted in knowing that even more people are praying for them.
*Lily's cardiologist appointment is tomorrow. Unless it is just a consultation, which I'm not really sure of, we should find out if anything is wrong with Lily's heart. If nothing is wrong, the doctor says we could find ourselves with 10 to 12 years with Lily.
*There's a girl I've been emailing back and forth for a while. Laurie is her name. Laurie is pregnant with a little girl who has Trisomy 18. This is her first child. If Little Toot doesn't get here by next week, the doctors will induce on June 2. Toot has a VSD (hole in her heart) and cysts on her brain. I know the emotional turmoil that I went through before Lily was born. I hate to think what all Laurie is going through, and my heart breaks for her.
*Another girl I've emailed back and forth, Shannon, is pregnant with a little boy, Oliver, who has Trisomy 18. She's due in June. She, too, is a first-time mother.
*Annabel Grace is having surgery on her bowel on June 4. I swear, this little girl's smile melts my heart!
I ask for these prayer requests because I know I have some wonderful people out there who are fabulous "prayer warriors." Just knowing that they were praying and cheering for Lily gave me so much comfort. May those on this prayer list be comforted in knowing that even more people are praying for them.
Friday, May 22, 2009
3 weeks!
I've been horrible at keeping people updated, but honestly, where is the time? I have absolutely none these days. Dave will not be at work this weekend, including Monday, and I'm psyched!
Yesterday marked Lily's 3rd week. . .another reason to be psyched! Here are a few pictures. . .
Proud big brother! This was his first time holding Lily.
I love this dress! Not too many clothes fit her well.
See how she tucks herself into a little ball.
Lily stayed awake for 3 straight hours yesterday and slept during her 2 o'clock feeding last night. I was in heaven!
Yesterday marked Lily's 3rd week. . .another reason to be psyched! Here are a few pictures. . .
Proud big brother! This was his first time holding Lily.
I love this dress! Not too many clothes fit her well.
See how she tucks herself into a little ball.
Lily stayed awake for 3 straight hours yesterday and slept during her 2 o'clock feeding last night. I was in heaven!Monday, May 18, 2009
Today's appointment
I'm sitting here at the computer with my legs criss-cross-applesauce. Lily is lying in my lap. The way she's curled up, she's made herself the size of me, right at my waste. How this little girl of average length can make herself so small astounds me!
What astounds me even more is today's doctor's appointment. Lily is now up to 5 pounds, 4 ounces. (I think it's all in the cheeks!) The doctor still cannot detect anything wrong with her heart, so he's sending us to a cardiologist. That appointment is next Wednesday. According to the doctor, if they don't find anything wrong with Lily's heart, she could be with us for 10 to 12 years. That's what he said!
Now, I know a little differently. I know that heart failure is a major reason babies with Trisomy 18 don't survive, but I also know that pneumonia and other infections can take their lives. (So, if you happen to ask me if you can hold Lily and I whip out a bottle of hand sanitizer, don't be offended. We do carry a can of it around in her diaper bag. You'd think I was quite the germophobe the way I use the stuff.)
So, Lily is not out of the red, but for now, the doctor can't hear anything, and that's enough for me to let out a loud whoosh. I'll take that and every day I can have with her.
What astounds me even more is today's doctor's appointment. Lily is now up to 5 pounds, 4 ounces. (I think it's all in the cheeks!) The doctor still cannot detect anything wrong with her heart, so he's sending us to a cardiologist. That appointment is next Wednesday. According to the doctor, if they don't find anything wrong with Lily's heart, she could be with us for 10 to 12 years. That's what he said!
Now, I know a little differently. I know that heart failure is a major reason babies with Trisomy 18 don't survive, but I also know that pneumonia and other infections can take their lives. (So, if you happen to ask me if you can hold Lily and I whip out a bottle of hand sanitizer, don't be offended. We do carry a can of it around in her diaper bag. You'd think I was quite the germophobe the way I use the stuff.)
So, Lily is not out of the red, but for now, the doctor can't hear anything, and that's enough for me to let out a loud whoosh. I'll take that and every day I can have with her.
Saturday, May 16, 2009
Mnemonic devices
As an educator, I know that one way for students to remember things is to give them mnemonic devices. PEMDAS, Roy G. Biv, Thirty days hath September. I guess there are mnemonic devices out there for helping people associate names with faces, but are there any out there that will store in my memory the little things about Lily that I'm so afraid I'll forget if she happens to leave us? Things that a photograph may or may not pick up.
Lily has her next doctor's appointment tomorrow. I fear this appointment. What if the doctor hears a heart murmur this time, signifying that dreaded VSD (ventricular septal defect)--that needle-point sized hole in the heart that the ultrasound never picked up, the one that eventually causes congestive heart failure, the one that may not show itself until weeks after the baby's birth. The one I'm praying Lily doesn't have. My motherly fear won't let me forget about it.
My heart breaks thinking about it because I can stare at Lily all day long, trying to memorize her, and I'm so afraid that maybe I've not had her long enough to where she'll constantly be ingrained into my mind's eye. It's bad enough if I forget about the little line underneath her bottom lip or the way her second toe is crazily longer than her big one or how her little fingers overlap in that classic Trisomy 18 way. But what if I forget how she looks--her little monkey face when she purses her lips, her leave-me-alone face, how she curls up when we lay her on her back and she rolls over to her side? Things I don't want to forget about.
In essence, I'm terrified for tomorrow, and even though I'm hoping for the best, I'm preparing myself for the worst. I hate that I'm even thinking in that way--it's making me sick thinking about it in that way--but I tried the whole pregnancy to prepare myself for every possible situation. I guess I'm still up to my old tricks.
Lily has her next doctor's appointment tomorrow. I fear this appointment. What if the doctor hears a heart murmur this time, signifying that dreaded VSD (ventricular septal defect)--that needle-point sized hole in the heart that the ultrasound never picked up, the one that eventually causes congestive heart failure, the one that may not show itself until weeks after the baby's birth. The one I'm praying Lily doesn't have. My motherly fear won't let me forget about it.
My heart breaks thinking about it because I can stare at Lily all day long, trying to memorize her, and I'm so afraid that maybe I've not had her long enough to where she'll constantly be ingrained into my mind's eye. It's bad enough if I forget about the little line underneath her bottom lip or the way her second toe is crazily longer than her big one or how her little fingers overlap in that classic Trisomy 18 way. But what if I forget how she looks--her little monkey face when she purses her lips, her leave-me-alone face, how she curls up when we lay her on her back and she rolls over to her side? Things I don't want to forget about.
In essence, I'm terrified for tomorrow, and even though I'm hoping for the best, I'm preparing myself for the worst. I hate that I'm even thinking in that way--it's making me sick thinking about it in that way--but I tried the whole pregnancy to prepare myself for every possible situation. I guess I'm still up to my old tricks.
Tuesday, May 12, 2009
Little Miss Priss
Finally! Time to sit down and update everyone! Lily is still with us and doing fine. Yesterday, the hospice nurse came in. Lily's heartrate was 180. It's been 160, so I was a little concerned, but as concerned as I was, I just couldn't ask her what that actually meant. I wasn't prepared to hear bad news (if there was bad news to give).
I worried about Lily all day long yesterday. Not so much because of the heartrate but because she slept ALL day. I was so afraid that it was her little body giving up. Not so! Little Miss Priss piped up as soon as her daddy came home. I think she just missed him because she stayed awake for a good couple of hours. I was hoping that would be enough for her to also sleep during the night, but no, she was awake during her 2:00 feeding and stayed awake past 3:00. I think she just wanted to be held, so I put her in bed with me and let her look at the bathroom light. We both got our cake--she was held and I slept.
She slept this morning but woke up when I had to wash her off because she threw up a little and it ran down her neck. Luckily, this hasn't been much of a problem. I'd say she stayed awake for a good two hours (while Gabriel napped--wouldn't you know it would happen that way), and she was so wide-eyed and squirmy. A little fussy, but SO DARNED CUTE! Of course, when feeding time came and I got up from my oogling and partial nap, she fell asleep. Is this the beginnings of the momma curse? :)
I say it all in jest because I am still so thankful that yet another day has come and Lily is still here! I'll take the cries, the sleepless nights (are those cries actually louder at night?), the throw up, the dirty diapers--ALL!
I try not to let fear creep in, but sometimes it does. The longer she's with us, the harder it's going to be to let go. I know that, but I'm still trying to keep the perspective of gratitude for each day that we've got with her. Like I said in an earlier post--more than I bargained for.
I worried about Lily all day long yesterday. Not so much because of the heartrate but because she slept ALL day. I was so afraid that it was her little body giving up. Not so! Little Miss Priss piped up as soon as her daddy came home. I think she just missed him because she stayed awake for a good couple of hours. I was hoping that would be enough for her to also sleep during the night, but no, she was awake during her 2:00 feeding and stayed awake past 3:00. I think she just wanted to be held, so I put her in bed with me and let her look at the bathroom light. We both got our cake--she was held and I slept.
She slept this morning but woke up when I had to wash her off because she threw up a little and it ran down her neck. Luckily, this hasn't been much of a problem. I'd say she stayed awake for a good two hours (while Gabriel napped--wouldn't you know it would happen that way), and she was so wide-eyed and squirmy. A little fussy, but SO DARNED CUTE! Of course, when feeding time came and I got up from my oogling and partial nap, she fell asleep. Is this the beginnings of the momma curse? :)
I say it all in jest because I am still so thankful that yet another day has come and Lily is still here! I'll take the cries, the sleepless nights (are those cries actually louder at night?), the throw up, the dirty diapers--ALL!
I try not to let fear creep in, but sometimes it does. The longer she's with us, the harder it's going to be to let go. I know that, but I'm still trying to keep the perspective of gratitude for each day that we've got with her. Like I said in an earlier post--more than I bargained for.
Thursday, April 30, 2009
Labor!!!!!
Sorry it's taken so long to post, but the laptop just got here. Thing have been going great! Lily's heart rate has been sound. Her blood pressure dropped a little, but the nurse says that's progress. I've dilated 9 cm, so I think we're close!
I was very fortunate to get an epidural at the beginning, so I've felt no contractions! I'm such a wimp, but it's been totally worth it because I've not been distracted, I've been totally relaxed, and my mom hasn't had to worry about me because I'm not in pain, and that takes away my worry about her worry.
I don't know when we'll post next. (I think Autumn will be in charge of that.) The nurse (Renee) just called the doctor, and he's on his way.
Thank you for keeping up with this. Thank you for your thoughts and prayers!
Wednesday, April 29, 2009
Contractions?
3:51. . .4:01. . .4:11. . .(Could this be it?) 4:21. . .(A little back pain) 4:29. . .(Drat, not much there) 4:39. . .4:51. . .(Back to the :01s?) 5:01. . .(Another) 5:12. . . (Maybe the seconds were off)
This is the way my early morning has gone. So far, I'm pretty calm, but I sense this fear, hovering in the background like a blanket of fog waiting to envelope me. Honest to goodness, though, I feel as if it's warded off by this "umbrella" of protection that not only surrounds me and Lily but surrounds my whole family. Your fervent prayers.
Perhaps the Extreme Tator Tots from Sonic has kick-started everything into motion. If not, I plan to spend a little time (easily) working in my yard, to get a much-needed hair cut, and to put last-minute items together. I'll probably work a nap into the day, too.
. . .5:23 (Nothing yet. I think I'll try to go back to sleep.)
This is the way my early morning has gone. So far, I'm pretty calm, but I sense this fear, hovering in the background like a blanket of fog waiting to envelope me. Honest to goodness, though, I feel as if it's warded off by this "umbrella" of protection that not only surrounds me and Lily but surrounds my whole family. Your fervent prayers.
Perhaps the Extreme Tator Tots from Sonic has kick-started everything into motion. If not, I plan to spend a little time (easily) working in my yard, to get a much-needed hair cut, and to put last-minute items together. I'll probably work a nap into the day, too.
. . .5:23 (Nothing yet. I think I'll try to go back to sleep.)
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