I read every last word; and I do care about your girls! Don't you just love insurance and medical supply companies, but i'm glad that the school PT was able to help out. Keep up the great job with your girls. They are beautiful!
Mon May 21, 12:09:00 AM EDT
Anonymous said...
Phew! That was exhausting just reading it! Glad you got the pony walker and that the eating is going better. Good luck with the sleep issues! It will get better!!
I can totally relate to the sleep issues. Eden sounds exactly like my little guy. They are so stinkin smart and know exactly how to get what they want. Crew does the same thing with hogging the pillow and snuggling in so close that I can't breathe.
I hate insurance companies and medical supply idiots. I'm glad you were able to round up another pony walker and hope you can get one of your own soon:)
What? Feeding your child in front of the TV is a bad thing? :0) Seriously, that's the only way I can get Halle to eat breakfast!
I'm so glad that things are "looking up" right now. I'm interested to see if the Periactin works for either of them. It's a miracle drug in our household.
Wow Billie! You really on top of it! Its like two full-time jobs! So glad the pony walker worked out! As far as eating in front of the TV, whatever works, right!? Hugs!
yes i care about your girls! I have backtracked and read all your entries and all I can say is WOW. As I said in my previous comments, I really really admire your strength :) Your girls are so adorable.
Mon May 21, 04:34:00 AM EDT
Anonymous said...
The whole family was eating dinner in front of the TV for several months (years?) with our preemie daughter with feeding difficulties. We chose a suitable video (not too interesting, to too boring) and our daughter would eat far better than at the dinner table. She really needed the calories and wee really needed the peace. Most other meals were eaten with us reading to her. If she stopped eating, we stopped reading. And she really loved us reading to her. Whatever works!
I've been trying to distract Hallie with videos, playing, etc to get her to eat, too. If you had talked to me a year and a half ago, I'd have been horrified at this prospect, but now, whatever works, works.
Anyway, what are you guys using to fortify milk up to 27 kcal? Right now we're giving Hallie Pediasure even though she's not quite a year old (actual). I've considered Carnation instant breakfast and whole milk as an option for when she turns a year old next month (next month!!!???!!! how strange that sounds). But I'd love to know what other options might exist for fortifying her food...
Wow! You have just unwittingly solved a problem for me... I have been reading your blog for a few months now, having stumbled across it and been charmed by your two lovely girls.
I have a ten year old son who two years ago started on adult doses of Periactin for severe allergies, and who, two years ago, had a sudden and unexpected increase in appetite... He has gone from being too thin to being non too thin indeed, and I shall be requesting a switch of meds at our next appointment. NOTHING was said about this, so thank you very much for this off the cuff comment!
(I know it's very tactless to talk about an overweight kid when you are struggling to get your girls to gain weight, but I am sure you will agree that a happy medium would be the best for everyone all round!)
We fortified to 27 cal for a long, long time too. First my breast milk, then the Enfacare. For awhile, I was even adding something else to bump to 30 cal. That's great that you're able to fortify the whole milk! Rather than doing that we switched to the generic pediasure in the powder form and I remember how excited I was to be saving that money!!
One thing that really help with our eating was switching to lactose free whole milk. My girls were never diagnosed lactose intolerant, but one time when they were really sick and vomiting, we switched to help with the puking and WOW, what a difference that made! We never went back to regular milk.
I hope you get the sleeping thing figured out soon!
Glad you found a cheaper solution. With Miss P being lactose intolerant, switching from Enfamil Lactose free to Lactose Free milk was even more expensive, so I found a cheaper way, or so I thought.. Rice milk fortified with lactose free Ensure. It worked out to being the same price as Lactose free milk. After discussing with my pharmacist, she suggested we try the Lactaid drops in whole milk - start out a max dose and then try to slowly wean her back since at this age, they can't verbalize the belly ache from the lactose. So as of today, we're weaned back 5 drops a litre (10 per litre vs 15 or 40 drops per gallon vs 60) and I get approx 9 gallons of dosage per $20 bottle of Lactaid.) I did try going to 8 per litre, but that wasn't enough and we had lotsa vomit :(
Its amazing what us parents do to "trick" our children that doctors and other professionals can't suggest and they're the ones with the formal education.
Mon May 21, 01:09:00 PM EDT
Anonymous said...
You're doing great---keep up the good work! My kids are now 10 and 8, but my husband has taken a job in another state and I am on my own until kids and I move as well in a few weeks. I have also gained a new admiration for single moms, and my workload is mostly playing chauffeur at this stage. Can't imagine doing bottles and diapers!
Stick to your guns on the bedtime issues and be consistent in your expectations. The girls' needs are important, but so is your marriage. They will be secure in knowing that mom and dad are committed to each other. You will be thankful later on. God bless, Lori in FL
Hi guys I am de-lurking to say that I read your site every day (as a Grandma of two myself) and am inspired by your optimism and energy. The girls are so lovely- also so different- it is so special to get a glimpse into another's life like this. Alas, today I was unable to get any pictures- and YES, I did read the WHOLE thing! I was wondering whether you had tightened security or something? I would sure miss "seeing " the two of them! Please let me know if this is the case, or if my computer is giving me a hard time, as it likes to do! Love, Grammacello
hi! i also read the whole thing, but must admit i never knew you could fortify anything, including milk, yourself :) glad to hear about the pony walker. and yes, keep that girl outta your bed! you remember raven was in 2nd grade when she finally left amy and ron!! you don't want that :)
We just finished an intensive feeding program with Noah and part of the feeding protocols involve using TV as a reward/distraction between bites. We use polycal to fortify Noah's food and duocal for his drinks: Pediasure and Boost Breeze. We're fortifiying up to 35 cal/oz, though. I agree with the other posters who say 'whatever works'!
Tue May 22, 04:02:00 PM EDT
Anonymous said...
Eating in front of the TV? Not bad at all. Lol. It really does work. In the eating disorder facility I was in, we ate dinner in front of the TV some nights, and those were the nights I ate more because I was to focused on the show to be focused on what i was eating.
Billie- your day sounds alot like my day except that when Ellie naps I get some down time. Having two is definitely more difficult. But we are dealing with the same sleep issues. That is really hard. Ellie is doing the same thing except it's not the bed she wants but my lap. She wants to sit on my lap or sleep on top of my chest. It is sweet but oiy! We are going to try the periactin too which will hopefully clear Ellie's constantly runny nose and make eating a good idea again. I am glad you had a breakthrough with the formula.
Everyday I feel as if I never get anything done around here. Glad I'm not the only one.
Thu May 24, 07:12:00 AM EDT
Anonymous said...
=) what a lovely insight into your family life (found you through disabiity blog carnival)! I'm 25 and I eat in front of the tv as I can sit in a supportive chair with my feet up to stop them going blue... Really enjoyed your pictures too, I should include more when I write, am off to a supportive chair to eat ;) xx
Thu May 24, 01:54:00 PM EDT
[Image] Where does all the time go? I feel like I never have enough time, and never get anything done. What exactly DID I do all day?
Well, John got back on Thursday night from a 3 day business trip to Chicago, so I had my first taste of single parenthood. I can't say that I liked it. I gotta give props to all the single moms out there who do it everyday. You are really amazing. Especially those of you with twins! And more especially to those of you who have twins with special needs! My goodness gracious. I wouldn't have lasted another day, and that is with a ton of help from my mom. Talk about exhausting. [Image]Both girls have been sick the past week with snotty noses. Luckily it hasn't been too bad and they have been pretty cheerful for the most part. The only problems we have had are with Eden not sleeping for a few nights, and with Eden not wanting to drink her bottles for a couple of days.
The not sleeping thing has really thrown us for a loop. We have gotten spoiled. It took Eden a few nights to adjust after coming home from the hospital. She had gotten really used to me sleeping with her, and really wanted to sleep in our bed...on my pillow...with her arm wrapped around my neck and my face pressed against hers. Very sweet really, except that I COULD NOT SLEEP. We had a major battle over that and it was painful.
Eden cries like her heart is broken. Like we are the absolute worst parents ever to make her sleep in her own bed. It seriously feels like a knife twisting in my stomach every time she starts to cry. It sounds like something is seriously wrong. We do everything we can think of trying to help her, but nothing makes her happy until we bring her in our room. Then she smiles, and leaps out of our arms onto the bed, and all is right with the world. Well, we figured her out. There's nothing wrong. She just wants to be in our bed.
The sleep thing is very, very hard. Especially with Eden. We are constantly second guessing, and thinking about all of the terrible things that she could be feeling. Maybe she is in pain. Maybe she is afraid. What if she has a seizure and we don't go in there? What if, what if, what if... We drive ourselves crazy with all the what ifs, then we go in there, and then it takes another week to get her sleeping through the night again. Going in there ALWAYS makes it worse. But we never learn.
She did seem to be back on track for about a week, but last night was a little shaky. We'll have to see how tonight goes.
[Image]On the eating front, things have been looking a little bit up. We have a new trick, that I am somewhat ashamed to admit, but we have been letting them sit in from of the TV to eat. Horror of horrors I know, but they are definitely eating more, more easily. We've discovered that Eden really likes sour cream, BBQ sauce, ranch, and gravy. She'll eat most anything if it is dipped in one of these. She also REALLY likes rice. I have had great luck chopping up her meat and veggies really small and mixing them with rice and gravy.
Other news on the nutrition front, and I hope this will be helpful for other preemie families, is that we've made a switch in their milk. Holland and Eden had been drinking Enfamil Enfacare formula, fortified to 27 calories per ounce, since they came home from the NICU. While we were in the hospital this last time I talked to the nutritionist and asked about fortifying whole milk up to 27 cal. She and the pediatrician thought it sounded like a great idea. They checked on the nutritional information, and verified that all of the nutrients are within acceptable limits. It is slightly higher in calcium and phosphorus, which could be a good thing since we know from her chest xray that Eden's bones are pretty thin. The most mind boggling part is that it is going to save us SO MUCH money!!! Yay!!! We will use about 1/3 the amount of formula that we were using before, so instead of spending around $90 a week, we will spend $30. I am so happy about saving the money, that I am only slightly irritated that I was the one to come up with the idea and we could have been doing it a year and a half ago.
[Image]As you can see from the pics, we are good to go with the pony walker situation. Eden's private PT needs hers back, so we were working on getting one through our insurance company. The process became quite tedious because the medical equipment company, Binson's, dropped the ball on us. They weren't wanting to pursue it because the insurance company was asking for additional medical information, and Binson's has not had luck in getting our insurance company to pay for that particular walker in the past. On the other hand, we had the insurance company telling us that it would be covered %100 if they got medical records indicating was medically necessary, and that the equipment supplier should at least pursue it until it was or was not denied. Binson's finally said that they would not pursue it unless we signed a waiver that WE would pay for it if it was denied, and that it was $2500. We would absolutely NOT sign knowing that we could get the walker for $1500 from several places online if we ordered it directly.
Anyway, long story short, we found out that Eden's school PT had a pony walker in storage that we could use indefinitely. She brought it on Monday and we have had some fun having "twooo" around the house this week.
[Image]I got caught up with scheduling doctor appointments this week, at least for the girls (I have a few I really should make for myself). We will see the ENT, pulmonologist, audiologist, ophthalmologist, and a new physical medicine doctor between now and mid-September. I need to call the new pediatrician this week because I want to get the girls started on Periactin (antihistamine that doubles as an appetite stimulant) and I am hoping she will write us a prescription. After I talk to the pulmonologist, and maybe after we see the physical medicine doctor in September, I will determine whether we will need to schedule an appointment with an OT for a swallow study.
And if you're still reading after all that...kudos to you! You must really care about my girls:)
Edited to Add: A couple of people have already asked about the recipe for fortifying whole milk to 27 cal. We use 3 scoops of Enfamil Enfacare powder to 18 ounces of whole milk. Hope it helps someone else! Be sure to okay any dietary changes with your pediatrician:)
"What did you DO all day?"
24 Comments -
I read every last word; and I do care about your girls! Don't you just love insurance and medical supply companies, but i'm glad that the school PT was able to help out. Keep up the great job with your girls. They are beautiful!
Mon May 21, 12:09:00 AM EDT
Phew! That was exhausting just reading it! Glad you got the pony walker and that the eating is going better. Good luck with the sleep issues! It will get better!!
Miss you!
Amy
Mon May 21, 12:15:00 AM EDT
I can totally relate to the sleep issues. Eden sounds exactly like my little guy. They are so stinkin smart and know exactly how to get what they want. Crew does the same thing with hogging the pillow and snuggling in so close that I can't breathe.
I hate insurance companies and medical supply idiots. I'm glad you were able to round up another pony walker and hope you can get one of your own soon:)
Mon May 21, 12:25:00 AM EDT
I read the whole thing! Yay! Glad you all are doing so well!
Mon May 21, 12:32:00 AM EDT
What? Feeding your child in front of the TV is a bad thing? :0) Seriously, that's the only way I can get Halle to eat breakfast!
I'm so glad that things are "looking up" right now. I'm interested to see if the Periactin works for either of them. It's a miracle drug in our household.
Mon May 21, 12:47:00 AM EDT
Wow Billie! You really on top of it! Its like two full-time jobs! So glad the pony walker worked out! As far as eating in front of the TV, whatever works, right!? Hugs!
Mon May 21, 01:38:00 AM EDT
yes i care about your girls! I have backtracked and read all your entries and all I can say is WOW. As I said in my previous comments, I really really admire your strength :)
Your girls are so adorable.
Mon May 21, 04:34:00 AM EDT
The whole family was eating dinner in front of the TV for several months (years?) with our preemie daughter with feeding difficulties. We chose a suitable video (not too interesting, to too boring) and our daughter would eat far better than at the dinner table. She really needed the calories and wee really needed the peace.
Most other meals were eaten with us reading to her. If she stopped eating, we stopped reading. And she really loved us reading to her. Whatever works!
Mon May 21, 05:20:00 AM EDT
I've been trying to distract Hallie with videos, playing, etc to get her to eat, too. If you had talked to me a year and a half ago, I'd have been horrified at this prospect, but now, whatever works, works.
Anyway, what are you guys using to fortify milk up to 27 kcal? Right now we're giving Hallie Pediasure even though she's not quite a year old (actual). I've considered Carnation instant breakfast and whole milk as an option for when she turns a year old next month (next month!!!???!!! how strange that sounds). But I'd love to know what other options might exist for fortifying her food...
Mon May 21, 05:41:00 AM EDT
I am most definitely keeping in mind the fact that you can fortify whole milk for the future... :o
Yay for a new pony walker!
-Sarah
http://sydney_lou_who.livejournal.com
Mon May 21, 08:03:00 AM EDT
Wow! You have just unwittingly solved a problem for me... I have been reading your blog for a few months now, having stumbled across it and been charmed by your two lovely girls.
I have a ten year old son who two years ago started on adult doses of Periactin for severe allergies, and who, two years ago, had a sudden and unexpected increase in appetite... He has gone from being too thin to being non too thin indeed, and I shall be requesting a switch of meds at our next appointment. NOTHING was said about this, so thank you very much for this off the cuff comment!
(I know it's very tactless to talk about an overweight kid when you are struggling to get your girls to gain weight, but I am sure you will agree that a happy medium would be the best for everyone all round!)
Mon May 21, 09:15:00 AM EDT
Thanks for catching us up on your happenings!
We fortified to 27 cal for a long, long time too. First my breast milk, then the Enfacare. For awhile, I was even adding something else to bump to 30 cal. That's great that you're able to fortify the whole milk! Rather than doing that we switched to the generic pediasure in the powder form and I remember how excited I was to be saving that money!!
One thing that really help with our eating was switching to lactose free whole milk. My girls were never diagnosed lactose intolerant, but one time when they were really sick and vomiting, we switched to help with the puking and WOW, what a difference that made! We never went back to regular milk.
I hope you get the sleeping thing figured out soon!
Mon May 21, 09:48:00 AM EDT
If you put a movie on in the computer in the kitchen, it doesn't count as TV correct? Guilty!
So glad to hear about the pony walker. Thanks to all of Billies' bloggers who e-mailed me and offered to help make this happen.
Mon May 21, 12:35:00 PM EDT
YAY on the Pony Walker!
Glad you found a cheaper solution. With Miss P being lactose intolerant, switching from Enfamil Lactose free to Lactose Free milk was even more expensive, so I found a cheaper way, or so I thought.. Rice milk fortified with lactose free Ensure. It worked out to being the same price as Lactose free milk.
After discussing with my pharmacist, she suggested we try the Lactaid drops in whole milk - start out a max dose and then try to slowly wean her back since at this age, they can't verbalize the belly ache from the lactose.
So as of today, we're weaned back 5 drops a litre (10 per litre vs 15 or 40 drops per gallon vs 60) and I get approx 9 gallons of dosage per $20 bottle of Lactaid.) I did try going to 8 per litre, but that wasn't enough and we had lotsa vomit :(
Its amazing what us parents do to "trick" our children that doctors and other professionals can't suggest and they're the ones with the formal education.
Mon May 21, 01:09:00 PM EDT
You're doing great---keep up the good work! My kids are now 10 and 8, but my husband has taken a job in another state and I am on my own until kids and I move as well in a few weeks. I have also gained a new admiration for single moms, and my workload is mostly playing chauffeur at this stage. Can't imagine doing bottles and diapers!
Stick to your guns on the bedtime issues and be consistent in your expectations. The girls' needs are important, but so is your marriage. They will be secure in knowing that mom and dad are committed to each other. You will be thankful later on.
God bless,
Lori in FL
Mon May 21, 07:57:00 PM EDT
Hi guys
I am de-lurking to say that I read your site every day (as a Grandma of two myself) and am inspired by your optimism and energy.
The girls are so lovely- also so different- it is so special to get a glimpse into another's life like this.
Alas, today I was unable to get any pictures- and YES, I did read the WHOLE thing!
I was wondering whether you had tightened security or something?
I would sure miss "seeing " the two of them!
Please let me know if this is the case, or if my computer is giving me a hard time, as it likes to do!
Love, Grammacello
Mon May 21, 08:19:00 PM EDT
I think I fixed it! Some weird Blogger problem...
Tue May 22, 12:16:00 AM EDT
hi! i also read the whole thing, but must admit i never knew you could fortify anything, including milk, yourself :) glad to hear about the pony walker. and yes, keep that girl outta your bed! you remember raven was in 2nd grade when she finally left amy and ron!! you don't want that :)
love you guys.
lisa
Tue May 22, 01:51:00 AM EDT
We just finished an intensive feeding program with Noah and part of the feeding protocols involve using TV as a reward/distraction between bites. We use polycal to fortify Noah's food and duocal for his drinks: Pediasure and Boost Breeze. We're fortifiying up to 35 cal/oz, though. I agree with the other posters who say 'whatever works'!
Tue May 22, 04:02:00 PM EDT
Eating in front of the TV? Not bad at all. Lol. It really does work. In the eating disorder facility I was in, we ate dinner in front of the TV some nights, and those were the nights I ate more because I was to focused on the show to be focused on what i was eating.
Tue May 22, 04:27:00 PM EDT
Billie- your day sounds alot like my day except that when Ellie naps I get some down time. Having two is definitely more difficult. But we are dealing with the same sleep issues. That is really hard. Ellie is doing the same thing except it's not the bed she wants but my lap. She wants to sit on my lap or sleep on top of my chest. It is sweet but oiy! We are going to try the periactin too which will hopefully clear Ellie's constantly runny nose and make eating a good idea again. I am glad you had a breakthrough with the formula.
Sigh. Lots of hugs to you warrior mama!
Kathryn
Tue May 22, 09:14:00 PM EDT
Billie - one more thought and one question.
I love that first picture especially. They are so connected as sisters. So cute.
The question is: what kind of stander thingy is that?! I want to try Ellie in it. No rush obviously on the answer.
Tue May 22, 09:16:00 PM EDT
Everyday I feel as if I never get anything done around here. Glad I'm not the only one.
Thu May 24, 07:12:00 AM EDT
=) what a lovely insight into your family life (found you through disabiity blog carnival)! I'm 25 and I eat in front of the tv as I can sit in a supportive chair with my feet up to stop them going blue... Really enjoyed your pictures too, I should include more when I write, am off to a supportive chair to eat ;) xx
Thu May 24, 01:54:00 PM EDT