Wednesday, June 17, 2009

Advice Please!

Hello Everyone!

Sorry it has taken so long to update since Hope's dermatology appointment. That trip to Pittsburgh wears me out and sweet Hope seems to be opposed to sleeping when the rest of the world sleeps so I have been napping every chance I get.

Anyway, there isn't much to update at the moment. The biopsy results could take up to another week. She had her little stitch removed and her feet are actually looking pretty darn good. She has a couple of new marks on her leg, not blisters, more like scratches, but they seem to be healing quickly without bandaging. There has been ONE new blister that appeared on her finger the other day. We drained it and you wouldn't even be able to tell where it is now. SO that is good. She is a good healer. The pediatric dermatologists are pretty sure she has some form of Epidermolysis Bullosa, but cannot confirm anything without the biopsy results. They feel at this time that if she does have it that it is likely a more mild case as she hasn't developed many new blisters despite us handling her like a typical newborn, and she is wearing regular clothes and they are not irritating her.

I have to say that when the doctors mentioned EB, I was angry. Isaac was tested for that as he had blisters at birth also. His case was worse, but his biopsy came back negative. I feel like through all the testing we have done, all we have gotten is misinformation. We were initially told that Isaac's issues stemmed from an infection he contracted inutero and that we would not have to worry about a recurrance, that was until Asher came and then suddenly it might be genetic. Now this. We were told he did NOT have EB and that we did not need to worry about that and now this. I have spent the past few weeks trying to sort my feelings out. Mainly I have been terrified. When you google Epidermolysis Bullosa, the information you get is not encouraging, in fact most if it is really frightening.

Our pediatric dermatologists have assured us that we should not panic just yet, as we do not know for sure if that is what we are dealing with and if it is, that there are MANY different types ranging from mild, where you would likely not even know a person had it to severe, which is what I was seeing each time I typed the condition into my search engine. There are also forms that seem to nearly disappear within the first year of life. So only time will tell.

That said, we are realizing that no matter what it is that Hope has, she is amazing, and she does have some special needs. We thought we were TOTALLY prepared for her and as it turns out we are not. This is where I am asking for your advice. There are a few things we need to get for Hope and I am a research it until I am blue in the face before buying it kind of girl. The thing is I don't have the time to research these days and so I am asking for your recommendations.

First, Hope loves to be held and close to us and I am thinking if I am ever going to get a thing done I am going to have to invest in a sling. I have a Baby Bjorn which I used with Ben and loved, and I have a Maya Wrap that an awesome friend loaned me, and I love, but I am thinking a sling might also be handy for her. So, mamas, tell me if you have a sling and if you love it and what kind it is!

Second, we had already planned on cloth diapering Hope, we have purchased an assortment of different products and have had a few generously given to us, but my head is spinning. I would love any cloth diapering advice and tips you all have as I have not done this before. We are going to go ahead and get some for her for now, which we hadn't done because we had disposables, but we are afraid the disposables might rub on her skin a bit too much.

Third, clothing...as you have seen in the picture of her closet, she has quite the wardrobe, but for now we are trying to keep her hands and feet covered to protect the current wounds and prevent new ones. I am having trouble finding hand mits for her that don't have harsh elastic around the wrist. We have been keeping her in newborn Carter's sleepers with the fold over mits, but she is quickly outgrowing them. So, do any of you know of where I can get some super soft no scratch mits for her little hands?

Fourth, she seems to be having a little trouble with reflux. None of my other children ever spit up and she does. I am breastfeeding and I DO have a strong let down reflex so I know she is gulping to keep up especially at first so we are working with that, it seems to help if we just burp her often and keep her upright after she eats. None of it seems to bother her at all she is a pretty happy baby and is gaining weight so the doctor is not worried yet, especially since she doesn't resist feedings at all. But it worries me and I would love any advice from seasoned moms I could get!

Ok, well I need to get my lasagna into the oven and make a salad with the boys. Please feel free to leave your advice in the comment section or email me at kbolte01@gmail.com!

PS If you have an extra moment, stop on by my friend Angie's blog and check out her latest post, it is pretty awesome and a beautiful testimony to God's good plan.

71 comments:

Molly said...

I'm sure you alreaady know of her blog, but Jonah's mommmy has got a sweet little muffin with serious EB. I assume anything he can wear your sweet baby girl should be able to also, since it doesn't irritate him. Just in case you haven't seen her site it's http://patriceandmattwilliams.blogspot.com/

Ellie said...

I have a Kangaroo Korner cotton all-weather sling and I absolutely love it! It has been a life-saver, since I have 4 children!

Dan and Sarah said...

I was going to say the same thing as Molly C did about Patrice William. She would have great input on the cloth diapering. I know she uses Fuzzi Bunz. that said, we cloth diaper full time and use exclusively bum Genius. we love their stuff. our recent gave is OS, All-in-One organic snap diaper. Awesome!!

As for the reflux, we've been around that block twice. For mild reflux some of the best front lines of defense are to keep upright for 30 minutes after each feeding, using a crib wedge to keep the head elevated, and to swaddle tightly to help with stomach upset. I also cut dairy out of my diet which helped both boys. If she is spitting up a lot, then there's not much they can do medically. However, if she seems to be in pain, there's a wide range the docs can try to help with that.

Anyway, you are in our prayers!!

Sarah
http://makewayforbabystephens.blogspot.com

Mama4Real said...

I have a sling, my friend makes them, over at keikikuddlerz@earthlink.net They have a website, but I'm not sure what it is. You could google it.

Also, my 1st son spat up until he started eating solid meats at 1 year old. There wasn't anything we could do, but keep bibs on him! My 2nd had really bad gas b/c of my fast/strong let down, so I nursed him laying down most of the time, so that if it was too strong, the milk could dribble out down the side.

There was something else I was going to say, now I can't remember!

Mom on a Coulee said...

Praying for you, as far as cloth diapering, go with what you feel comfortable and you can afford, there are A LOT of options in the end it has to fit you and your circumstance.
Reflux, have lots of bibs, and what worked best for me was feeding small amounts sometimes five minutes or less and offering whenever he wanted it. I felt like he was glued to me, but I'm that kind of mom anyway. I always breastfed him and found some foods I ate upset him more than others, it was always trial and error. He was a small infant/toddler, but now he is the tallest in his class (at 7). Keep loving your family and know you know best for your children.

Melanie said...

Hi Kristy, I don't have much input, but I do have a little:
Rebekah spit up REALLY badly for the first several months. SHe continued to gain weight and didn't seem disturbed by it...It was never diagnosed, but I think that it had to do with what I ate (and then only nursed her). **I** think it was linked to milk. It seemed that if I had any milk/ dairy, she would then spit up! So, I gave up milk, ice cream, cheese, etc. She was born end of May, so that meant a whole summer of ice cream missed!
It only lasted for about 6 months or so, then she was fully into solids. She was able to have milk, and can drink it now.
But, like I said, it was completely my own hunch, but I think it was milk-based.
DOn't know if that helps you or not??

Tiffany said...

Hey Kristy!

I know you said you are having problems findng mits to where the elastic is not harsh on her wrists. How about buying some long sleeve onesies a size bigger and just putting the mits over the part of the that covers the wrists? Just an idea!! I don't know how good it would work! And, about the reflux have you looked up the symptoms of it? If you think she has true reflux though, push for them to give her something to help with it. That is what I had to do! I finally got one of Logan's doctors to prescribe medicine for it today! Continuously praying for you guys! Love you so much!!

-Tiffany!-

garricksmom said...

As far as a sling, I have an over the shoulder baby holder. I got my first one with my oldest when he was almost a year and used it until he was well over 3. With my youngest I had it on walking around the mall when he was three weeks old and I could nurse him with no one seeing anything-they may have known what I was doing but couldn't see it. But I just quit using mine for my youngest when he was 4. Good luck.

Bec said...

I have been praying for Hope! My son had pretty bad reflux, but unfortunately I never felt like we found anything that worked. I do, however, have an idea about the mittens! Perhaps if you found some really soft baby socks, you could put those over her hands to prevent her from scratching herself? I don't know if you crochet/knit or have a friend who does, but they make some really soft yarns that would make some cute little mitten/socks for her!

PB and Jazz said...

Do you read or follow McMama? I have older children but she has used cloth for all four of her kids and always uses a sling. She has four kids under 5, they may all be under 4. here is her link:

www.mycharmingkids.net/2008/03/search-my-blog-by-topic.html

Just Me said...

Sorry I don't have any "mommy advice" for you (but I am sure glad I know one place I will go when I need some of my own!) For any babies we get with reflux at the hospital, we encourage parents to keep them upright for 30 minutes after feeds to help things go in the right direction, but of course that doesn't always work. Our hospital cribs can be adjusted to have a 30-45 degree angle which seems to help some.

And, Angie's blog post was SO awesome! When she re-posted that story, I remembered reading it last year, but definitely didn't remember it enough to realize the impact of it now. I can't wait to see that new photograph!

Take care.
Hugs and prayers,
Amanda

Magda said...

I have a peanut shell sling http://www.thepeanutshell.com/ and LOVE it! My daughter would sleep in it while I did all sorts of housework!

Priscilla said...

I second the Peanut Shell sling - maybe a soft microfiber?

Check out a Carter's outlet if you can - I think I remember them having onsies and sleepers beyond newborn size with the built in hand covers.

Best of luck and congratulations on your new baby girl!

Shelby said...

I agree...MckMama would be a good resource for cloth diapering and sling info!

As for the reflux...If you have a pretty strong letdown and Hope is gulping alot, then try pumping for a few minutes first. After you've let down and you're not gushing anymore, stop pumping and let her nurse when the milk flow is slower and she can go at her own pace. Keeping her upright for 30 mins afterward helps too.

I also commented on your last post about sending some clothes with mitts for Hope. I'd love to help if I can, but don't know your address. Please let me know if I can help!

Shelby
shelbydarrah03@hotmail.com

Anonymous said...

Would socks work as handmitts?

connie said...

Mal's speech therapist found a really cool thing called nap nanny - it's sort of like a wedge, but also like a seat, so she can sit in it and not slide off like on the wedges. We were given a wedge, but it was so high, and came with the "sling" (really like a diaper) that holds the baby in place sewn to it, and Mallorie could never fit it, the way her hips and legs go, so I can't speak about how that would work. Jessica's Alex had something called a Tucker sling that worked for him.

This nap nanny is so soft and so cute, though ... we have pink. http://napnanny.com/

I found someone on ebay that makes really cute all-in-one diapers (flannel inside and out) that would be nice and soft. I love them, and they are really easy to use. However, they also take awhile to dry. But talk about easy. Let me know if you want her contact info.

I also use and love Bummis Whisper Wraps and Super Whisper Brites - the cheapest place I've found them is here: http://www.thanksmama.com/Bummis_Super_Brite_p/bms-963.htm I love them - they last forever, and after washing just dry. We use them with regular cloth diapers.

Anonymous said...

Use soft infant socks....thats what i used on my daughter....she had big hands and those mits always fell off...so i got the fuzzy soft newborn socks and put them over her hands,..they stayed on...Im just not sure if you should find ones the same material as the mittens since those do not irritate her skin.....

Jen---Jenkays2000@yahoo.com

Niecey said...

Is there a sling lending library anywhere near you? We have an API group here in Lincoln, NE, and they have a sling library where you check out a sling and try it to see if you like it. You can try various styles etc. It's a great idea.

I have various cloth diapers, but my favorite is kissaluvs. It's a terry material, so I'm not sure how that would work out for your daughter.

Unknown said...

My baby loved when we put him in a sling! It even got to the point that if he was crying and fussy and I would get the sling out....he would quiet down in anticipation of being put in it. I highly recommend a sling! There are so many types out there and it seems that everyone has a different preference to what they like.

My favorite was from www.gorgeousbaby.ca. A Canadian company but I am Canadian! We loved these slings and even my husband got one. He loved wearing the baby around and it would give me a little break too.

Good luck and hope you get in a good nap.

Becky said...

When we had numerous foster children in diapers, we used a service. I loved it. They provided 'wraps' for the diapers. Worked wonderfully.

For one of the little people we had, I got some sleepers from Land's End that had flaps that did come down over the hands. I loved those too! They had normal cuffs, but flaps that could simply be pulled down.

katrynka said...

I am not a Mom:( (wish I was, but that is not why I am writing!)

I do read a lot of blogs, too many really!

But here are some cloth diapering posts I have read:
http://www.twosheep.com/blog/index.php?s=diaper

Someone else mentioned McMama

http://ourlittlefootprints.blogspot.com/search/label/cloth%20diapers

The second site has a listing of a blog called cloth diapering 101.

Hope all goes well!

Christina Vare said...

We have cloth diapered now for about 20 months and love it! We started out with BumGenius One-Size, but both the elastic and velcro deteriorated to the point of not being able to use them. Had I lined dried the covers instead of drying them in the dryer, I think their lives would have been longer. Just a tip! We now use FuzziBunz one-size exclusively, and I personally think they are softer against my daughter's skin. Kelly's Closet is an online store with a great selection if you want to see what's out there.

Also, I loved this blog mama's rundown on cloth diapers...very informative, especially for a first timer! http://simplemom.net/page/3/ Check it out...she did a post for every day of the week.

Best of luck to you!

Emily said...

We use the Infantino SlingRider and love it! It has a little crotch strap to keep her in place that's super soft and the whole thing is super soft and padded. I also like that it has soft mesh on the sides at the top to make sure she gets plenty of fresh air. Not sure though if the mesh might bother your little one's skin though.

And Simple Mom just did a great week-long series on cloth diapering complete with videos that wouldn't take too long to read and gives more helpful information than I've found elsewhere. http://simplemom.net/tag/cloth-diapering-101/

courtney said...

someone (or two) has already mentioned it, but definitely go to patrice (jonah's momma) for advice! jonah has EB and she has done really well researching items and materials that he can tolerate.

Nutty Mom said...

I don't know if anyone already said this, but for keeping her hands covered you might just try some toddler sized tube socks, or baby legs (with out without sewing up one end). I hope you get lots of comments and find something that will work!!!

Tiffany Lockette said...

Babies R Us believe it or not had great mittens that were not tight. I can't help you with the sling and when I breast fed, I didn't have a problem with my milk letting down to fast, I had problems getting enough. Check out Babies R Us though. I think the mittens were like a mint green color and white color. Hope this helps. Good luck with everything and many prayers for you guys.

Keri said...

My son (5mo)doesn't have EB but still is a really bad scratcher of his head and he loves to yank on his ears until they bleed. He is in 12-18 month clothes so they don't come with mits. I had a hard time keeping them on so I found a big shirt where the sleeves hang down over his hands works well. When I want him to have his hands during the day, I fold up the sleeves. This has worked and he hasn't figured out how to get his hands out.

I have a moby wrap and while I love it, I could see it putting added pressure on her when she gets out of the newborn hold. My son's legs get a little red when he is in the front facing hold but he is a big kid.

As for the reflux, both my sons had it and I think my major letdown added to it. My current nurser took about 2 months to tolerate the letdown and for my milk to adjust. He is medicated for reflux because he grunted like he was in pain a lot. It has majorly helped with the amount stuff he refluxes up.

Cloth diapers.........clueless!

I pray that your little one doesn't have EB!

Kelly Bennett said...

I have a hotsling that I used with my 5th baby... I am done with it and would love to send it to you if you'd like to try it.....
Praying for Hope :)
kelly

Kelly Bennett said...

oops I forgot to leave you my email it is kellybennettphotography@yahoo.com

Kenzie said...

Kristy-

A few things: 1) I have a maya wrap and a bjorn too but a blogger friend Jill suggested www.babyhawk.com. She has 8 kids (6 through adoption) and she said it the the BEST EVER! I went to the website and they really look awesome!! 2) I thought SERIOUSLY about cloth diapering Faith Clare and haven't done it (although I'm still wondering if I should start) and I checked out several different kinds and the Fuzzi Bunz were AWESOME, super soft and seemed pretty easy (besides all the laundry) 3) I will look around and see what I can find about the mitts 4) Deacon and Faith Clare both have had pretty bad reflux. I did use a sleep positioner for them, a swaddle blanket (yep the miracle blanket is really a miracle- LOVE IT!) and had their beds on an incline... they were both on medication until they were 6 months. Faith Clare just got off hers less than a month ago.

Not sure how much help that is but just giving you my thoughts. I love you so much and am thinking and praying for you guys so often!! You need a prayer pager like we had for Maddox :) About the trip, I completely agree with Emily about everything she said... LOVE YOU!

Mommato4miracles said...

I have a very strong let down reflex too, what I would do is pump between 2 and 5 minutes just to take the edge off for my kids. It helped them, and started my freezer supply off right:-) I have a moby wrap which I absolutely love because it is so versatile there is like probably 10or more ways you can wear your baby:-) God bless, we are praying

TheSooner7 said...

I know you are nursing, and am not sure of your feelings on formula, but I too had a daughter that spit up all the time, like projectile after every nursing. Someone recommended Enfamil AR and I loved it! I only used it once a day, and only a few ounces, b/c I was nursing, but it cut her spitting up by at least 2/3. I used it on my 4th child also, worked the same. It has worked on several of my friends too, some nursing, and some not. Anyway, if you are okay w/ minimal formula, you might give it a try! If not, sorry I couldn't help :(

Marie said...

4littlemen.blogspot.com will have a lot of advice on slings, she is obsessed with them!! She also cloth diapers. You already know about Jonah, he's had the same reflux issues and I know his mom Patrice is more than willing to talk to you.

I wouldn't read on the internet about EB until you know what Hope has, or you'll just terrify yourself. There is a huge spectrum of EB, and so far she has it pretty mild (if that's what she has). Check out lil Jonah and you'll see it can be much worse. Praying that Hope has the mildest version, or not EB at all!

Kristi in Colorado said...

My favorite cloth diapers are Fuzzi Bunz. They are SO soft! What would be most beneficial possibly to your little girl is the fact they are so super soft around the leg casings and belly. My next favorite is Bum Genius one sized. I initially thought velcro would be good, but I now totally and completely reccomend snaps! The Fuzzi Bunz seem easier to clean and they dry faster as well. I was my in Original Tide with hot with one cold rinse and then I wash them again for a second full cycle in just water. I occasionally use baking soda as a booster if they are really yucky. I hang the diapers to dry which with the Fuzzi Bunz only takes a couple of hours and dry the inserts in the dryer. If they have a lot of build up, I strip them with Dawn in the washing machine, soaking them first. I usually buy my diapers from lilbunz.com, she is great over there and her prices are good, she ships fast and sometimes throws in freebies.

I found your blog through someone elses and have been reading for about a week. I am praying for your sweet baby Hope and for the rest of your family.

Christa @ Quintooples said...

I have always found ring slings to be the most adjustable, and with a c-section to deal with (oh the memories!!!) you may need the extra adjustability of a ring sling. That and the tail of the sling can double as a nursing cover, which I always liked. One less thing to carry around. :)

Christa @ Quintooples said...

Oh, I also think the socks are a great (and cheap!) idea!!! If you have any questions about the pocket diapers please feel free to email me. :)

Barclay Kathryn said...

What about using baby socks to cover her sweet little hands?

Anonymous said...

I also love my Peanut Shell sling. I have a microfiber one and it is very soft with nothing to rub the babies skin.
Also, with the nursing/spit up: try nursing only on one side instead of switching side. Nurse on that side for a four hour period (if she eats more then once in that period) then switch to the other side for a four hour period. Hope that makes sence.

Merrilee said...

As far as slings go, I love my ring slings. So super adjustable! Maya wrap has a bunch of options, but there are millions out there. They are all about the same, so it's basically finding your favorite fabric.

For cloth diapering, how much does Hope weigh now? I used newborn cloth diapers until my son was about 12lbs then switched to one-size diapers. Many people have mentioned pocket diapers, which I personally hate because of the stuffing and special laundry procedures (personal preference). I use fitted diapers and wool as the cover. In fact, I just use knit pants that are made with wool yarn and it's super easy. I make fitted diapers to sell, but I can help you figure out what will work best for you diaper wise. You can email me through my website. www.dilleydally.com

Hollie Wood said...

I tried a ring sling and it KILLED my shoulder unfortunately. Just got a Moby Wrap and LOVE it!! It distributs weight evenly and my daughter loves it! I purchased the newborn gowns from GAP.com and got 3-6 month sizes and she fit in them til she was well into 3-4 months old and they have the fold over mits...otherwise maybe socks might work??? Good luck! <3

Cathy said...

Babywearing: http://4littlemen.blogspot.com/search/label/babywearing

Cloth Diapering: http://www.mycharmingkids.net/2009/03/cloth-diapering-101-giveaway.html

or:http://www.serwachic.blogspot.com/ (She makes special order diapers and they are much less expensive than buying them at the store.)

Hope this helps!

Kadence and Adam. . . and Mommy said...

For the mittens questions. . . Carter's DOES make the Sweet Pea sacks (gowns) in bigger sizes. But if all else fails. . . grab a new pair of socks (we cut the top band off) and put them over her little hands. . . Just make sure they are long enough because they won't be very tight on her precious little arms.

Good Luck and God Bless!

Amy from Honolulu

Anonymous said...

Hope is gorgeous. I will check in again to see how she is doing, hopefully all is well with her and all your family.
Re slings: somebody recommended an Infantino - I would not recommend that for Hope as it makes the baby curl up in a chin-to-chest position, if she has reflux she'll be better upright - a mei tai would be better or a wrap or you could have her upright in a ringsling. There is an American forum http://www.thebabywearer.com/ - you can buy a used sling from there if you don't want to invest in a new one, or maybe borrow one - and get lots of advice on slings!
I hope you find something you like and works for you, having a baby in a sling is wonderful (but the Bjorn-type gets uncomfortable once the baby gets heavier).
Martina (a babywearer from UK)

Laurie in Ca. said...

No advice from me Kristy except maybe try to not scare yourself on the internet until you have solid answers for Hope. I just want to let you know I think of you every day and am praying for you and Hope.
Asking for peace of mind for you and healing for Hope. I love you girl.

Love and Hugs, Laurie

Mrs. H said...

Forgive me if this has been said, as I haven't read through all your comments, but for the hands... how about trying socks instead of those mittens? We've found that to work for us in the past. :)

Kari said...

My daughter had pretty severe reflux. We had to put her on a dairy free corn free formula. It did kick back up when she started eating. I'm sure you have been told what not to eat, onions, spicy foods, green beans, etc. But I found out that avocados and banannas have a nautural ingreident that helps with reflux. Since they injest what you eat you could try that. We did end up having to put her on meds and I found that previcid solutabs worked the best.

Hilary Marquis said...

As for mits, you could try using soft baby socks and rolling the cuffs to hold them snuggly. The reflux, all 3 of my biological children had..as did their daddy. They could paint a target across the room! The doc had them sleep in their carseat carriers for the first month and that helped (or at least made me less worried of them choking at night. It never bothered any of them, it wasn't acidic or painful and they all gained weight like little piggies! I became accustomed to carrying several changes of clothing/bibs for them as well as an extra shirt for myself in the diaper bag ;) Slings are absolutely the way to go. I don't remember what kind I have, but there are so many that people rave about I think the Maya and the peanut shell are the ones I heard about lately. We will continue to pray for a quick lab result, peace, and a happy ending for all of you. Great is our God!

Kimberly K said...

I don't know if you read McMama's blog (mycharmingkids.net), but she uses a sling for baby Stellan and writes about it. She also has several posts about cloth diapering. You are in my prayers, as well as Baby Hope and the rest of your family. Remember that worry is not from God...I will pray for a peace over you that surpasses all understanding! You are full of His beauty and your faithfulness to Him through this walk is unbelievable!

Lisa said...

My youngest two children also have a rare skin disorder (I sent you an email about this a week or two ago). When we googled it in the beginning I was terrified because every single thing we found were the worst cases. The doctors are right...don't let yourself panic. As crazy as it sounds...you will feel better when you know what's going on...even if it means she has EB. It takes a little while to come to grips with things like this so enjoy your baby and try to put it on the shelf for now.
BTW...We have always used baby socks as mittens for our newborns...they stay on much better.

"I'm a Mommy!?!" said...

If the reflux issue is related to your fast let down, you might try a trick that my lactation consultant taught me. Recline your own body when you start nursing so that you are at like a 60-degree angle or so, and then let the baby lie on you more on her tummy (so that she's semi-upright too) to let gravity keep your milk from gysering into her mouth and throat. Might help baby to not have to gulp to keep up, etc.

Jenn said...

Worst case scenario is to use baby socks to cover her hands. We did this with our newborns to both keep their little hands warm and to stop them from scratching their faces.

Anonymous said...

We have a baby moon sling from babymoonslings.com I absolutely love it and still use it for my 20 month old. I always get compliments on it. Praying for your little one. I understand the feeling of waiting for the other shoe to drop. As a Mom of 2 chronically ill children, my heart goes out to you. Your family is in my prayers.
~Katie
www.caringbridge.org/visit/alexanderlindemann

Language Arts Lady said...

One of the blogs I read did a couple of posts explaining about the differences between brands of cloth diapers... I think that would help you a lot! She explained why she liked various ones and reasons others liked different ones.

Here's the link to the post about brands:

http://cliobaby.blogspot.com/2009/05/8-month-cloth-diaper-review-part-two.html

Hope this helps!

Anonymous said...

Should you little one have EB, that only means there will be different obstacles; however, such obstacles have given me (in my 47 yrs with EBS) a great understanding of life, love, friendship and moreover spirit.....spirit of all kind.

Peace Love Light to your lovely family.

John Kincaid said...

praying for you and your sweet family! to answer your questions...love the moby wrap, especially for less than 6 months stage! Cloth diapers...LOVE all kinds of cloth diapers, would recommend something like indian cotton prefolds and wool covers, as those might be the least irritating to her skin....there are wool covers that dont have elastic in them....otherwise, I really like Green Acre Designs (GADS). I've tried TONS (read-WAY TOO MANY FOR MY OWN GOOD) of different kinds of cloth diapers, so if you feel comfortable emailing me I'd be more than happy to go into more detail about the different kinds 2kincaids@gmail.com ) My daughter had acid reflux too, and had to take a compounded medication to treat it...but she outgrew it around 11months or so. Take care!!

Shannon said...

I had bought some little mitts for my kids at sears, I believe they were Kushies brand. they dont have elastic in them.

Another idea would be to look on Etsy? maybe someone can make you some just for Hope.

Gabbin' with Giff said...

Our little girl ate SUPER fast and had gas all of the time. A nice warm bath helps to relax them enough to burp well (I thought the lady that told me this was a little looney, but it works). I would also just let her be still for a while after feedings. I would stroke her cheek slowly to try and get her to suck with a little less vigor! :) And I must say that Gripe Water was/is our best friend. It's all natural and no medicine unlike Mylacon. I gave her Baby's Bliss brand (works best, I've tried others). Our little one would spit up and we thought every last drop came out, but it is a lot less than it looks. She gained 2lbs in 2 weeks! How much would she have gained if she kept it all in?! I'm hoping this helps! Continue to take great care of your precious gift! :)

Rachele said...

I'm not much help, but I can tell you I have found the sleepers with the fold over hands at Old Navy for larger sizes.

I'm not sure about other mittens without the elastic - maybe you or someone you know could make some?

*hugs* I follow your blog closely and love reading about Hope.

Anonymous said...

Contact this mama: http://www.mycharmingkids.net/

She is all about slings and cloth diapering and other such things.

blissmamaof3 said...

Wow you have a new baby and you're making lasagna! Way to go!! I love the Hotsling. They are available at Target. I also have an Eco carrier I saw in Mothering magazine. It is really great as well and has an adapter for infants. You can use it for a child up to 45 pounds. As far as cloth diapers go, I use a combo diaper called G Diapers. They have a cotton cover, a plastic insert to keep everything dry and a disposable pad that can be flushed or composted. They are avaiable on line at gdiapers.com or at Babies R us. Good luck!

The Booys said...

I have an ergo baby carrier...I LOVE it. It is better when baby is a few months old, but can be used much longer...well into Toddlerhood. I don't know what I'd do without mine. I had a sling, which was also great when my son was very small. The ergo has a newborn attachment, but I didn't like it. However, the ergo is easier to put on and take off quickly, which is good when you need to get ready to go in a hurry. My son LOVES it. You can sometimes get one off ebay..you could also ask on your blog if someone has one to sell or that they don't need anymore. I believe they are about $100 new, but so worth it. You can also re-sell on ebay when you are done with it, and get half or so of your money back. Check out their website. Baby Hope is precious!

Tori said...

In regards to the spit up...my first never spit up but my second could send spit up from one side of the room to the next. At first I was very concerned but it didn't seem to bother my son and he was gaining wait. Our doctor wasn't concerned at all either. I did my best keep him upright for a while after eating which did seem to help. I thought about changing my diet but didn't (the doctor said if his stools remain yellow mustard seedy it isn't my diet.) Now at four months old, spit up is rare. It's probably been about a month since we've had any major spit up. My advice would be just to hang in there. Some babies spit up more than others. If it isn't bothering her she will probably outgrow it shortly.

Anonymous said...

Sock = mittens, YES!

Reflux = sorry, no help there.

Cloth diapers = sorry don't know about them either.

Ring sling = had one and hated it. Made the weight bearing shoulder sore and tired very quickly, and limited my arm movements. But my baby loved it and would get quite excited when I got it out. Using a 'sleepy wrap' for baby #2, much more comfy for me.

Heather said...

I used a sling called a kissa sling, it comes in a knit fabric that's very soft and comfy. My kids both had reflux (breastfed), cutting out dairy in my diet helped. Good luck!

Angela said...

Diapers - if you are concerned about leg casings/elastic irritating Hope's delicate skin look into the Happy Heinys SIZED pocked diapers. They have no leg casings so only the fleece touches the skin. Their one-size diapers have leg casings, and I find that they leak whereas I never had issues with the sized pockets.

www.happyheinys.com

Slings - love the Baby K'tan. Almost as versatile as a Moby wrap without all the extra fabric. It is by far my most favorite carrier and I have a lot.

www.babyktan.com

Reflux - all 3 of my children were breastfed and spit up regularly. No projectile vomiting but just normal spitting up after a feeding. However, our third was actually diagnosed with reflux at 7 weeks. He started developing symptoms around 4 weeks and it took a few weeks for the light bulb to go off since he didn't spit up any worse than my previous 2 children. Signs to look for would include irritability after feeding, crying during and immediately after a feeding, pulling away from breast/bottle while feeding, arching back, crying when laid flat on back, aversion to eating since it causes pain.

Most newborns have some degree of reflux, whether or not acid comes up with the milk and burns their esophagus determines if they need to be medicated. Some babies, like my son, are silent refluxers meaning they don't spit up very much but the acid is still being pushed up out of the stomach into his esophagus. Things you can do right now are to elevate the head of her crib/bassinet and what you are already doing - keep her upright for 30 minutes after a feeding. The muscle that keeps the sphincter closed at the top of the stomach gets stronger and more coordinated as your baby gets older so most kids eventually outgrow any reflux issues.

Mittens - I believe Patrice uses mittens with satin ribbons tied around the wrist instead of elastic for Jonah. But baby socks like other have suggested do the trick quite nicely as well.

Praying for your sweet Hope daily =)

Heather said...

Hope is purely scrumptious! I know you are enjoying her snuggles (even with sleep deprivation and medical drama). :) I always used baby socks on my kids hands because the elastic ones didn't stay put. You can also use little girls hair bands to keep them on sometimes. The stretchy ones, not elastic though.
Also, I had a really strong let down. I found it helpful to latch baby off as soon as my milk came in and let it drip off a bit onto a burp cloth. Then I re-latched baby for a few minutes before burping. If she isn't bothered by it, my pediatrician always said it's more of a laundry problem, than a medical one :)
Blessings!

Anonymous said...

I really like the Ergo carrier because it's very supportive for baby and you. You can also put baby in sideways like a sling. If you don't want to spend that much $, there's a Korean version, called the Pognae (www.pognae.com) that has a couple extra features, is well-made, and costs about $30.

As far as cloth diapering, I am rather frugal :-) so we use Gerber prefolds (the nice ones, NOT the birdeye cotton) and Thirsties covers. They work great for us!

D said...

I am a NICU nurse and use soft baby socks on my primary patient's hands. They are soft, do not scratch his face or hands, and much cheaper than hand mitts!

UNC NICU RN

Melinda said...

What about turning them inside out? Would that work? (hand mits with elastic?)

Kristy said...

Hi there - my son Carson was born with EBS (the Simplex form, i.e. the mildest form, of EB). We also needed to keep his hands covered because he scratched his face so much. We just used newborn socks. They were cheaper and easier to find than the mittens, and because they are longer, they stayed on his hands much better.

Kristy
Mom to Carson, EBS, age 6

Holly said...

Stopping by from Lynnette's blog. I had a pocket sling (Mamma's Milk) and I didn't care for it at all. Having it just over one shoulder made my shoulder and back hurt. I got a custom wrap that I really love. It distributes the weight over both shoulders and my back and it feels much better, especially toting a 20+ lbs toddler!

I love cloth diapering. I started off w/ Bumgenius but the aplix wore out quickly. I now use Tiny Tush OS Elite with snaps and I love them. I use Country Save for my detergent. I do a cold prewash soak, hot wash, and 2 cold rinses. I hand dry my dipes most of the time unless I am in a hurry and then I dry them on medium heat in the dryer. Line drying dipes is great and sunning them helps with sanitizing and stains. A helpful website is diaperjungle.com. You can email me too if you need any help @ caring4carleigh@yahoo.com.