Tuesday, April 28, 2009

jonah update

UPDATE - Thank you for your offers of breast milk storage bags. If you have extras that you're not going to use, I would love to have them. You can send them to our PO Box (right side bar). Packages are okay as they put them in a locker if they are too big and then put the key to the locker in your box. Anyhoo, just make sure to put Matt's name and not mine. I never signed for the PO Box, so technically it won't get to us if it has just my name (although I'm pretty sure that's a load of poop... better to be safe than sorry, right?) And I'll definitely keep my eye out for the cheaper ones next time or try the ice tray thing. Clever. Very clever.

I have not gone over the edge, although a couple times the last couple days, I felt myself teetering. I know that yesterday was a bad day not to post after my not-so-positive post on Sunday, but it was a long day, I was tired, and I figured a good mediocre night's sleep was probably the best medicine.

Jonah's breathing and eating have improved, although I still don't think he is eating enough. I think he should be eating at least three ounces every three hours, and although he sometimes drinks a full three, there are many times he won't take much over two. His weight is good (he weighed 10 lbs 3 oz when home health came yesterday), but I just worry about all the extra calories he needs to resist infection, heal, and regenerate new skin. Poundage is not really the issue. I know he's getting enough to stay hydrated, but he just requires so much more than a "typical" baby.

My mom took off work and stayed with me yesterday, Matt's Aunt Patsy is here with me today, my friend Gina from church will be here Wednesday, and then Matt's parents will be here through the weekend. Kim, Andrew, and the kids will be getting into town late Thursday night (although they'll be staying at Granddaddy's), and they'll be here through Sunday as well. I'm glad to be surrounded. I often think of couples or even single mom's who have to endure this cruel disease and the hard work it takes to care for a child with EB who do not have the extensive support network and awesome family and friends we do. I don't know how they do it. We are so blessed. And it's pretty easy to feel isolated even though I am surrounded, so I can't even imagine how lonely it would be if you truly were on your own.

Thank you for all your beautiful comments of love and support. They have encouraged me, although I still don't think I'm back to my normal self... hopefully I'm on the way. I appreciate your comments about anti-depressants, and it's definitely something I am considering. Maybe that's too personal to post to the whole world, but I'm definitely not one of these people who thinks if you need medicine to help you, there's something wrong with you. If I need help, I need help. I just want to keep an eye on it, and not rush into medicating myself to deal. If the isolated day lows turn into majority day lows, I'm all about getting some help. And I'll follow the same philosophy I did during child birth - BRING ON THE DRUGS.

It's crazy how you can love your kid so much, appreciate his life and the fact that he's here breathing and beautiful, be more thankful for him than anything, and yet still feel so frustrated, exhausted and completely overwhelmed at the same time. But I'm pretty sure that's an ANY new mom thing and not just an EB thing. Although I know the struggles of caring for an EB baby definitely magnify all of it.

Things are discouraging on the blister front. They weren't kidding about heat and humidity being bad for breaking down the skin. Jonah has new blisters on his face, hands, and feet. His two worst ones are on the front upper thigh of his right leg and under his right armpit. Those two are the kind that grow, and they've just kind of taken over. The one on his thigh wraps almost all the way around, and the one on his armpit covers it, his upper arm, and is wrapping around to his back and in the front to his chest. They are impossible to wrap and protect. It's so frustrating. He cried during his bath last night and when I was wrapping that arm and leg. Often times, I don't think the small ones cause him a whole lot of pain, but these (now large patches of raw skin) are definitely hurting him. It breaks my heart.

Continue to pray for him as we transition into hot weather. I hope once his body gets used to the change, it might adapt a little, but I'm not sure that's how it works. We may be in for a VERY long summer.

Switching gears...

Can you store breast milk in regular freezer bags? These Medela bags cost $20 for a box of 50 (Sorry, Debbie. I had no idea.), and I'm going through a lot. Ideas?

And because I try to mask my Yikes-I-just-totally-exposed-myself posts with a little humor -
The other night my breast pump was saying, "Pay up. Pay up. Pay up." This definitely confuses me since I thought my pump and I had settled up on all our bets a couple weeks ago. I think I'm getting played. Stupid pump.

124 comments:

Channe said...

Patrice - just wanted to say that you're right about all those feelings being a new mom thing, when our son was born 6 months ago I was frustrated, exhausted, & overwhelmed, too, & he doesn't have any health issues. I think the sleep deprivation is a big part of it - it had a tendency to mess with my mind. It took about a month of him sleeping through the night (midnight - 6:00am) before I started to feel "normal" again. Sending love & prayers your way...

Karen & Shahin said...

So glad you are feeling a little better. My prayers continue for Jonah and your family. As for breastmilk storage you might want to buy one of these: http://www.selfexpressions.com/motmil.html

I have this and it is great for storing milk in the freezer and allows you to rotate out the bottles. I believe they are Medela compatible and are BPA free, so a safe plastic.

Prayers from Boston,
Karen

Anonymous said...

Yes, you can store breast milk in ANY clean, freezer safe container. Just remember to store in small amounts so you don't have to thaw too much at once. And remember to refrigerate for several hours before freezing.
I have worked with breastfeeding moms for years and am happy to chat if you have any questions.

Lots of love and prayers
Jamie
jamiechristina@gmail.com

Anonymous said...

Don't know that I would risk regular freezer bags for fear they wouldn't be sterile (assuming breast milk bags are). I know EB magnifies everything beyond what I can comprehend but you sound just like me when my daughter was born. It is overwhelming and you are exhausted. It DOES get better. I continue to prayer for you and your family.

Anonymous said...

please knoe that i am keeping you and your family in prayers as i hope and have faith that hte lord knows that you can't do this alone and he will send whom ever he needs to work for him to you. that being siad i have no idea what you are going through. eb that is, and i can't even wrap my head around some of the things you have described. i have two sets of twins, one of our twins is an angel, a forever baby...that journey alone isolated me, then our second set of twins thriving now but we had a short haul of difficult times and scares, again i felt like me against the world, now here i am three children and since the whole "fairytale" "happily ever after" thing was ditched 10 years ago with our first miscarriage I have felt many days the ebb and flow of faith, love verses mental balance. i guess im trying to say is that i applaud your frankness that although you count your blessings with gabe and jonah, you are in awe that the lord spared jonah for your family to raise, and you are devoted to your family, you are human and it hurts and feels very unfair and almost cruel. truth is it is, unfair, but i don't beleive for a minute that god gave breath to jonah so that you must suffer nor him, i beleive that through the lord in his name and with his faith god will provide an amazing life for jonah, you his family...there will be peace...this probably hasn't helped too much but i do admire you you, and jonah is quite impressive too!

Kelly said...

Patrice - it took us 2 years to get pregnant with our daughter and she nearly died when she was born (she's 3 months now) and there are days when I'm just spent. I love her so much but being a new mom is hard. Add any extra difficulties and it can seem almost impossible. You are on my mind and my heart pretty much daily. I think of you and how you must be feeling constantly. I pray each day that God gives you strength to just get through that day.
And P.S. I think Jonah is absolutely beautiful and I would love for Harper to date him one day! :-) He will never hate his life because he is blessed with a wonderful, loving family and that's more than a lot of the world has.

Anonymous said...

Patrice,

Praying hard for Jonah, you and your family. I am amazed at your strength...and so thankful for your family and network of church family and friends.

Laurel in Alabama

Toni :O) said...

I breastfed two babies, one for 13 months and one for 16 months and I had always been told to not use regular freezer bags due to the lack of sterility you would need. I think Karen's suggestion is a good economical one for you if you don't want to keep buying the bags. I think of you SO often and my children ask about your sweet little boy all the time. We continue to pray for you and I've SO been there with the sleep deprivation (my daughter never slept until she was over a year old!). It's truly awful but yours is magnified. All I can say is hopefully it will get better for you and I'm so thankful you have the help and support you need. God is truly good! Sending you hugs (( )) (( )) (( )) for strength!

Mindy said...

I just did some cleaning and found a pack of 25 Gerber Seal and Go Breast Milk Storage Bags. Looks like I used one and they are from the last year. I'll mail them to you. If you send me your address.
My email:
ace333@frontiernet.net

Angela said...

The Gerber Seal and Go and Lansinoh breastmilk storage bags are much cheaper. Usually around $10 or less for about 45 - 50. Check Amazon and buy in bulk to get free shipping.

I use the Gerber bags exclusively since we use the Playtex nursers. The Gerber bags are designed to also be used as inserts for those bottles. So not only are they dual purpose, we generate less waste which is a good thing since I'm a crunchy/granola/green mom.

I am praying for Jonah and your family daily and have encouraged members of my moms group to do the same. Be blessed today =)

Jenilee said...

I remember the middle of the night craziness of being a new mom... sometimes middle of the day... evening... :) being exhausted is so hard. I had 3 under 3 and was up in the middle of the night one time with my youngest and God reminded me of the simple, but powerful song "Jesus Loves Me"

"Jesus loves me! This I know,
For the Bible tells me so;
Little ones to Him belong,
They are weak but He is strong.
Yes, Jesus loves me!
Yes, Jesus loves me!
Yes, Jesus loves me!
The Bible tells me so."

At that moment, my baby wasn't the "little one" or the "weak one" - I was. I felt little and weak and needed God to be strong in me. Let me tell you I sang that song hundreds of times through that first 6 months. I still think of it often.

God BLess you and your precious baby.

Kama @ Today's Housewife said...

I pour my breastmilk into ice cube trays and put foil over them. I read about it in a book I'm using to make baby food. I then store them in regular freezer bags... Seems to work for me.

Happy and tired said...

I bought tiny little canning jars and used those to freeze 3 -4 oz. of breastmilk at a time. Glass is perfectly safe to use. A whole case of them is not very expensive at all.

Praying for you. You are a a fabulous mommy.

Blessings to you all.

Kristen said...

It seems like you already have some great suggestions for storing the milk, but I'll throw in my two cents (if it's worth that) too. I tried a few regular freezer bags and found that even though they were freezer bags the milk seemed to freezer burn more than the milk bags. Also, they seemed to bust easier and I lost more than it was worth...I tried e-bay and looked for brand new bags and got 100 for the price of 25 or so.

Lorraine-bo said...

Patrice,

First of all - thank you for sharing yourself and allowing us to know how to pray for you.

Second - As someone who used to think depression was for the weak ... until I battled it ... You are right in thinking that no need for drugs if you are just having those normal isolated days of sadness that come with the daily stresses of life. If you do start to find them to be the majority of days, however, I'm glad you do not feel any shame about the possibility of medication. My pastor was very reassuring when I saw him several years ago. He said that the "church-world" puts a stigma on depression that one must not be strong enough in their faith if they allow depression to creep in to their mind. He then went on to remind me that there is very real spiritual warfare going on around us ... for us! The enemy attacks relentlessly and sometimes it takes physical tolls on us, including messing with chemical balances. I pray that you will not have to deal with that, but wanted you to be encouraged that there is nothing "wrong" with you if that possibility comes to fruition.

Lastly - may the Lord surround you, Matt, and Jonah with extra warrior angels to protect & strengthen you!

Tracy said...

in the NICU we stored breastmilk in regular disposable bottle bags for the playtex nursers. They are sterile and come in rolls of 100 for about $8 and take up less room in the freezer than containers do. You can even get generic. Then you just twistie tie or rubberband the top. You may have to buy a box of sandwich bags to get the twistie ties. I recommend double bagging so that you don't have to worry about things hitting it in the freezer.

Amy said...

I am not sure about your situation with EB, but I always froze my BM in ice trays, and then moved them to freezer bags in the deep freeze. The cubes thaw pretty quick, and they are easy to measure out. It seems like 1 cube was about an ounce. I would just be sure that your trays are sterile, and I think you would be fine. Hope that helps, and I know those bags cost a fortune!

Karla said...

Don't let the stigma on medication keep you from doing it. I went through a rough couple of years after my dad passed away and it helped keep me on an even keel. It really helped me through a rough patch and now I'm off and doing just fine.

I use Lansinoh breast milk bags. I wouldn't trust regular freezer bags. Here's a link:
http://www.drugstore.com/products/prod.asp?pid=72403&catid=20&brand=23229&trx=PLST-0-BRAND&trxp1=20&trxp2=72403&trxp3=1&trxp4=0&btrx=BUY-PLST-0-BRAND

I'm praying for you all every day.

Karla

Kristy said...

Hang in there, Patrice.

As long as Jonah is still gaining weight - he is doing great, all the way around. His body will take the nutrients to grow new skin, fight infection, etc. first, BEFORE is stores it as that adorable baby fat. Trust the weight gain.

Kristy
Mom to Carson, EBS

Erin Hingley said...

Dear, Patrice:

I am so glad you posted an update. I've been praying/wondering/worrying about you all. I am currently taking Zoloft for PPD (Post-Partum Depression) so please feel free to e-mail me with any questions. I am also nursing my one year old so I know that you can take it and still breastfeed. I actually started my blog because of my PPD...

On a side note, I store everything in Ziploc freezer bags...if you're not sure, just double bag them in reverse directions...does that make any sense?! haha

Sending more prayers your way!! Lots of love...

Erin in va
youmeandwipee.blogspot.com

Leslie Baker said...

Hi Patrice -

As far as medicating, I had a bit of postpartum depression after my 2nd child and my doctor recommended trying St John's Wort before he prescribed me anything heavy duty. I found that the St Johns Wort did help me enough to where I didn't need anything more. It is a natural mood enhancer that you can get at basically any store...say...Target! :-)

Anonymous said...

REUSE YOUR MILK BAGS!!!!!!! Don't cut them. Don't throw them away after one use - re-use them!!!! Wash them out with the bottle brush and use them again once they dry. I did that with three kids. It wasn't the money for me - it was the environment. PLASTIC IS EVIL and the biodegradation process of it causes many toxins to be released in the soil, then into our water, then in the veggies that drink the water and into the lakes/oceans from which we get our fish..... I would HIGHLY recommend to reuse the bags. ....and then recycle them. FYI (and everybody's) it take 1000 years to biodegrade plastic - water/coke bottles, gift cards and store bags. We can help to ensure our kids' good health if we are conscious of what we use and throw away. Jonah's in our prayers!

Lyndsay said...
This comment has been removed by the author.
Lyndsay said...

Hi Patrice,

I've been reading your blog now for a few weeks and my heart goes out to you. I have two boys and it's hard enough dealing with a newborn let alone a newborn that requires specialized care. I love that you are willing to get yourself care if need be. I always thought of it like this...if mommy is not getting enough rest or eating good or just taking care of herself in general how can she possible take care of her baby. I'm so glad that you are surrounded by friends and family that love and care for you.

As for the breastfeeding bags, I buy mine at Target. I got the Lansinoh ones on sale 25 for $5. They have packs that are bigger than that though. I've never used regular ziploc bags.

God Bless,
Lyndsay

Anonymous said...

Hey Patrice,

As a mom of 4, I just wanted to let you know as others have that your feelings are absolutely normal. I pray although, that the good Lord would fill your days with help and friendship and joy. My children do not have any medical concerns- but I have to tell you after every one of them through the first year although I love them more than life- I have struggled with depression. One of the things I've found that really helped me was finding "real" friends who aren't afraid to talk about their feelings that also have a small child/children. Its awesome you are getting help- but its so good to know you are normal and not bad and not a "bad" mom for feeling the way you do.
Jonah is so sweet and such a blessing. You'll find it easier once he can smile and giggle and show you more how he loves you.
The first year of life with a baby is the hugest learning curve. You are doing great as far as I can tell from here. You are a GOOD mom.
God Bless you, and I will continue to pray for the little guy. That he would have no pain. That support would come and surround you in every way with every need. God is good, and He is with you.

Carlee

Lil' K said...

HI! Glad you are feeling better...still praying for that sweet one here in Tx!!

I have MANY breast milk freezer bags that I did not use. Can I send these to you??? Which address is best?

Please let me know - kimreed25@yahoo.com

Anonymous said...

Patrice continuing to pray for Jonah.When my child was born he had a great deal of health problems. I was told not to freeze my expressed milk in regular freezer bags due to they are not steril. I was told I could freeze in glass bottles but had to be sure they were sterilized first.

Tara said...

http://www.sensiblelines.com/shop.html
this is a reusable system.. not real cheap but being you would only need to by a few and thats it (ever). I wish I saw this when I was breastfeeding my youngest.
Glad you are feeling a bit better.

Sashka said...

I use the Lansinoh bags, they are much cheaper (which I see has already been mentioned). Anyway, I haven't had to pump much this time around and have 23 bags that I shall not be needing. I can send mine to you too, if you want. It's not much, but every little bit helps, right? sbs_ny@yahoo.com

Anonymous said...

Target (and other places) also carry Lansinoh Breast Milk Storage Bags. They are only $9.99/50. Still not free, but much cheaper!

Kirsten: said...

There are always frustrating days as a new mom with or without EB. Take advantage of your family when they are around to help...take a nap, go for a walk or even take a nice hot shower. It does get better!

I too used the Lansinoh storage bags, I actually have a pack that were never used. I'd be happy to mail them to you if you would like.

Take care and know that you and your family are in my thoughts!

Shawna from Round Rock said...

Hang in there ~ I am sure the days and nights are long and exhausting at times, but with God's help, they will get better. We are praying for you everyday. New moms have a lot of tired days and some frustraation, too. I can't imagine your routine. You know in the end that it is all for your beautiful, precious little boy! From a Mommy who only knows you from reading your blog, I think you are doing a great job!!

Anonymous said...

Patrice I felt the same way, and my baby didn't have any health issues. You love your child so much, but ajusting to no sleep and no time to yourself is hard. Being a first time parent is scary, because you are always worried that you're doing something wrong. Just wanted to let you know you are not alone in these feelings. I pray for your family every night and will continue to do so.

Emily said...

Patrice
You can store breast milk in the disposable bottle liners...they are sterile and cost about 3 bucks for 50!

Darcy said...

After you pump, pour your milk into ice cube trays after its fozen put it in a bag. That saves tons of money, yes milk bags are VERY expensive!!

Sarrah said...

Just wanted to add in my two cents about storing breast milk...
The best way I found to do it was with the Playtex Drop-Ins. You can buy a breast milk storage system for them which has a pump adapter which can attach the bag to the pump and then sealing caps. you can take the sealing cap off, replace it with a nipple cap and screw the bag straight to a playtex nurser bottle. You can defrost the milk in the bag which is essentially the bottle so it makes it quite simple. As someone else commented, the bags are very inexpensive and you can even buy the off brand which work just as well at Target.
We are still praying for Jonah and your family.

Connie Mae said...

I don't remember if I have commented before but I am a daily reader! I have been praying for you and the care for Little Jonah! He is such a gorgeous little one! I got breastmilk storage bags on ebay. Also, I have gotten them on clearance at walmart. Lansinoh is a little cheaper: 7.95 for 25 dollars. I did lots of ebay shopping for them. Hope that will help out!

Jane said...

So glad to hear Jonah has improved on his feedings, but sorry to hear about his new blisters. I see you have a lot of suggestions for breast milk, can't say that I can help in that department. :-) Just know you all are in my thoughts and prayers so much of the day. Remember to take 1 day at a time and take advantage of people being there this week-end, you and Matt go out and do something together. Jonah will be only a phone call away. Leigh told me Matt's mother is a nurse, so I am sure Jonah would be in good hands. Take care and may God Bless and keep you.

Laura A said...

Hi Patrice- glad you were able to at least get a little rest. Will pray for Jonah's new blisters, and that he won't be in too much pain.

I don't have any new info to add on the breastmilk bags - I used Medela and Lansinoh when I was breastfeeding. They're not cheap! But there are some really good suggestions here, so hopefully one will work for you.

Continuing to pray - hope today is good!

Love,
Laura in TX

Stephanie said...
This comment has been removed by the author.
The Wells family said...

Patrice i have 2 boys and one more one the way with bubble boy disease i feel your pain about not going out with friends and giving up the life you thought you wold have with your child! My boys are now 5 and 3 and are in school there is hope for baby jonah! He will make friends he has wonderful parents and will be self confadeint which is the most important thing that he can be! Also i love the target off brand storage bags they work just as well and you get more for like half the price. We pray for your family every night.

HMPY said...

I have a HUGE bag (probably over 100 @ least) of breastmilk storage containers that my cousin had gotten from Vanderbilt Children's Hospital while she had a daughter in the NICU. I've used about 25 and continue to clean and boil them to resterilize instead of going through all of the contains.

They have a flip-top that snaps down and each holds up to 4 oz (I think) and they have the cc/mL markings as well. [With a child that had issues with her feeds, I definitely know how close you have to monitor their intake to try to make sure they get the proper nutrition.] I can send you a couple of detailed pictures if you want more information about them.

I'll mail them to you if you would be interested. There was even a sheet of stickers that allowed you to easily label the bottles with your name, baby's name, date pumped, date/time frozen, date/time refrig, etc. (I'll have to hunt the stickers up though. I had many nights where I would "goof" on the labels, too. After the 3rd time of doing it, I actually bought a pack of clear, file folder labels and typed up and printed out the info and printed enough for each date so I just had to peel & stick. The clear ones had less adhesive so I was able to remove the label during washing and sanitizing so that I could reuse & relabel the bottle.)

Please e-mail me at heather.hmp@gmail.com if you would be interested or if you would like more information on the containers.

I hope the times of frustration, exhaustion, etc are few and far between.

Praying for you, as well as Jonah and the rest of your family & friends.

Elizabeth said...

Patrice, I was an exclusive pumper too...and I bought the plastic bottles that hooked to my breastpump, washed them, and reused them.

I'd also like you to know that all mommies feel these ups and downs of emotions...I certainly did. I'm sure a lot of mine was due to hormones adjusting. So, I would imagine that you feel extra-tired, extra-frustrated, and extra-burdened sometimes. Just hang in there...people all over the place are pulling for you! I'd say by the time my little boy was 2-3 months old, the hormones let up a little. So hopefully that will help you just a tad (I know it doesn't take away the rest of your worries).

Elizabeth said...

http://www.easyexpressionproducts.com/

I forgot to mention this...if you are an exclusive pumper, this is a must! Life became much easier for me when I found this...and it makes a lovely outfit after you're done with nursing, haha.

Donna in NC said...

Still praying for you and your sweet, beautiful baby Jonah. If you feel you need anti depressant or anti anxiety medicine, there is absolutely NOTHING wrong with that. I take it myself, and if that's what it takes to cope with life, so what. It's better than suffering and worrying about things that I can't change. I can't even imagine how you must feel. Do what you need to do to make yourself what you need to be for your baby.

Alyson said...

You can buy Medela storage containers, that can be frozen and then reused.....They are like $12 for I think like 20.....I'm not sure something like that.....That's what I used for Avery's milk.......I loved them!!! i wish I knew that you needed bags....I have a small unopened pack that I could've sent you with that package.....

Did you get the package I sent???

Emily said...

Not sure if anyone else has told you this, but you can get breast milk freezer bags in generic form (like parent's choice) that work just as well, have the ounces on the outside for easy storage, and are $10 for 50. Still pricey when you consider how many you use, but half the price of what you are using now! :)

Melissa said...

So glad that Jonah's boogie situation has improved. Cold season is sooo hard on babies. That's at least one plus of transitioning to warmer weather -- colds decrease significantly. I will be praying for little Jonah's blisters during the less skin-friendly warmer months, though.

Your posts are so imformative in letting us know how to pray. I never would have thought on my own that warmth and humidity would make blistering worse. You're doing a great job of giving specifics for us to pray for.

And you are so right that the mere fact of having a new baby is exhausting, frustrating, joyful, et cetera. Sleep every chance you get right now, because it is amazing how a little sleep makes you feel further from the edge! My boys are two and four, so we are somewhat out of the sleepless nights part, but not entirely, as someone always seems to wake during the night for something. Sleep, friend, sleep.

I'm so thankful to God for your support network. Let them manage things for you a little each day while you nap. It's not selfish, it's life-saving.

And take a Target outing just for the fun of it, too! Maybe have a friend meet you at the Starbucks I saw in the picture you posted of y'all at Target. Coffee solves many problems (in my humble opinion)!

Love, prayers, and blessings!

Leah W said...

hang in there, even with a baby that does not have eb the feelings you are describing are still there. if you need help ask for it :)

your a wonderful mommy, jonah is a lucky boy. be patient with yourself, him & his eb.

jess said...

Had to comment about something that I think is important for you to keep in mind. You have posted about the fact that you are pumping breast milk. I exclusively pumped breast milk for my daughter for over a year. She was a very small baby, with no sucking reflex. In fact for the first month I had to feed her with an eyedropper every hour or literally pour milk into her mouth out of a small cup.
I pumped every 3-4 hours, day and night to keep up my supply. I was exhausted, worried and feeling often very depressed. Then one day it dawned to me how hard the pumping really is (Jonah doesn't nurse at all right?). It drains your body, without getting any of the "good" "happy" "comforting" (the hormone is oxitocin, right?)hormones that occur when you nurse your baby. The pumping was cold, mechanical, tiring, and so impersonal. I didn't even get th 'let down' response when my daughter cried, but let me tell you, when I heard the wooooshhhooo-wooooo of that pump I 'let down' them. It is not natural, but breast milk is so very important (IMO, no need to debate).
Also, it took me only about 10-15 min to get my milk pumped...but if you were nursing, it would take maybe as long as 45 mins. What is my point? Just that your body is working unnaturally hard.
I am not writing this to make you feel discouraged from pumping, in fact I feel just the opposite. I know it was one of the BEST things I did for my daughter. Jut please, please, please don't underestimate how hard it is. It took hearing from another pumping mom for me to 'get it'.
You are doing so wonderful. Jonah is so beautiful.
Keep up the awesome work!!!!!!

my3sons said...

I wanted to tell you that my breast pump soudned like it was talking also! Too funny...it does sound like it is chanting something doesn't it?
Still praying for your little man!

Mommy Attorney said...

I have some unopened bags I would love to mail to you - my supply was always a joke. Would a small package fit in the P.O. box?

Amanda Sikes said...

I am mother to four and I have used all types of storage containers for breast milk. Anything that is freezer safe can be used.

We are praying for little Jonah and you. The newborn stage is so hard and made even harder when the baby is so very, very ill.

Praying for comfort for Jonah.

A Clear, Brilliant Glass said...

If time commenter, but I have been reading since I found out about Jonah. I'm also another Mama here that has extra bags sitting around. I'm thinking around 30 - 40. I will send them your way! crystalj76@gmail.com

The Goodman Family said...

Patrice, (THIS WILL HELP YOU)!!

I know something that will help you with the breast feeding bags! I hope that you are reading this. My sister would pour her breast milk into ice cube trays, then once they were frozen she would get them out and put them into regular zip lock bags. She would only put a few (6 or 8 I think) in each bag (enough for 1 bottle). When it was time to feed she would place the zip lock bag into a mug of hot water to unfreeze the breast milk cubes. I hope that this helps you, and we are still praying for you!

Keisha Goodman

Rachel said...

I am sorry you are having a rough day. I don't post much, but read every post. Please vent away...we are all here.

As for the bags. The Lansinoh brand are way cheaper and in my opionion WAY, WAY BETTER. They have a double ziploc and they freeze better in the freezer flat so you can store more of them. SO much better. They are about $10 for 50 at TARGET. I have also found them at my local grocery store (Vons)for $8 for 50.

Becky said...

Thank you for sharing your whole journey....the good and the bad...He is using you and your story....THANKS

Irisheyes143 said...

At a quick glance I'm not seeing an address, I have a LOT of extra milk storage bags I can send to you. If you email me your addy at irisheyes143 at dubline dot com, I can send them out.
-karen

Irisheyes143 said...

one more thing - this site is great for breastfeeding advice (esp when you need to thaw and reuse!) http://kellymom.com/

Anonymous said...

Hey Patrice, I work in a NICU and we order bottles from the medela company to store our breastmilk in. I'm not sure how much it cost but 100 80ml containers come in a case. Also, sterile glass jars are good (like the ones you can buy for canning. You can put multiple pumpings during a 24 hour period in them and freeze in it. But make sure you leave room in either type of container for it to expand when it freezes. I don't recommend using regular ziploc bags because they tend to leak and can puncture and contaminate the milk easily.

Shelley said...

Hey Patrice, I've been following you guys since Jonah was born but I've yet to leave a comment. I just don't really know the right words...to tell you how inspiring you and your family are. Your faith is refreshing. Your attitude is admirable. I pray for you, Matt, and Jonah. He is ADORABLE. I appreciate you letting us into your life. Keep that strong faith and sweet sense of humor. God will bless you...He IS blessing you.

I'm not so sure about the freezer bags. I have a bunch of Lansinoh breast milk bags I never used. If you email me your address, I'd love to mail them to you! I know that stuff gets outrageously costly!!! I also used these little plastic bottles that screwed onto medela breast pumps and they're washable!!! That really saves $$$. I have a brand-new unopened bag of 36 from the NICU if you want them! Let me know!!

Anonymous said...

Patrice - I pray for you daily. I think some of what you are experience is perfectly normal "new mommy" stress. As far as breastmilk storage bags go, I used lansinoh and they are cheaper and worked great. I used Gerber bags a few times but they ALWAYS leaked. The CDC's recommendation is to avoid using regular plastic storage bags due to leakage or spillage. Maybe if you found some really heavy duty bags. Breastmilk is liquid gold, so you don't want it to leak!

Shelley said...

oops! forgot to put my email...
shell_134@hotmail.com

Anonymous said...

I just read all of the posts and your blog. As I have posted before,THE WILLIAMS FAMILY is AWSOME. I know Matt has/gets to leave to go to work and he can physically escape, but I'm sure emotionally he would rather be at home with you and Jonah. When he does get home he probably wants to relieve,reassure & HUG you and Jonah.[ You haven't said how Matt is dealing, though I feel like he shares many of the same emotions.(but being a man, does not share all of his feelings).]
Do make sure that your marriage is FIRST(the best gift ever for Jonah). Take advantage of family this week end, get out HAVE A DATE.
Talk to your GYN re: medication don't wait until you are exhausted as it takes weeks to get into your system.
LOVE THAT BABY OF YOURS & HUG THAT HUSBAND OF YOURS.
GOD WILL TAKE CARE OF THE REST.
LOVE & prayers as always
2shoes

Anonymous said...

OK Patrice, this is the first blog post I have ever done as I am not into blogging, but I am into reading your blog. The best thing I found is to pour your milk (right after pumping) straight into ice-cube trays. Freeze it and then pop them out into gallon Freezer bags with the month labeled on it. Then you use the big bags in order and you can increase the # of cubes your baby gets as he takes bigger portions. Each cube is about 1 oz. And there is nothing to buy - Free is always good. I used it for both my kids and it works like a charm. Less labeling and less waste of milk. It really helps to have the large mouth bottles because the cubes fit right in. I could get 5 oz in the 9oz large mouth bottle. Hope this helps.

Erin Weeks

Becky said...

I think the Lansinoh bags are less expensive and I like them better than the Medela bags.

I'm praying for you, Jonah & your family!

nancygrayce said...

In the summer, my daughter in law keeps the a/c down because her feet will blister if they get to hot. Although she has EBS, I see the blisters and know they hurt. She does take pain meds when the blisters get bad.

I think you're an amazing mama. You're doing HARD work, not to mention the emotional toll. For totally different reasons, I started on antidepressants several years ago and it does help. It doesn't make the situation go away (rats!) but it makes you better able to handle things.

Praying for you and your family.

Sandy P said...

I stored all of my milk in regular snack sized zipper bags. It seemed to work out just fine. I sometimes would put it in a sandwich bag to thaw in case there was a little hole!

Kristie in Dallas said...

Just a note to let you know, anti-depressants DO NOT make you any less "sober minded". I'm afraid Stephanie is confusing them with anti-anxiety. Anti Depressants work to balance the chemicals in your brain when they become unbalanced. It has nothing to do with sobriety and they are in no way mind altering. As a committed follower of your blog and a constant prayer warrier for Jonah and your entire family, I have to admit, I took offense to Stephanies post. I know she did not mean for it to be offensive so I will let it go.
You are such a strong woman. I will pray extra extra hard for you and Jonah and your entire family.

Ashley said...

I used Lansinoh bags - I believe you can get 50 for about $10 at Target. They are much cheaper than Medela and work great!

J said...

I was just wondering what to do last week with my extra 40 milk bags. Our baby is about to be one and hopefully the milk fairy will go away :)

They are on their way along with all of our prayers. God bless you guys.

Stephanie said...
This comment has been removed by the author.
Snyder Central said...

As for the breastmilk bags, I used to pump, then pour into ice cube trays. Each cube is roughly one ounce. Once frozen, break them out of the tray and put them in zippered freezer bags. I think they go bad a bit quicker than in regular bags, but every bit helps. As for his boogers, have you tried drops of breastsmilk to loosen them? I know breast milk works so much better for my guy.

Just'N Angel said...

You need to write a book! Your posts are so transparent and yet full of humor and love. I am praying for you and sweet Jonah. I hate the blisters are so bad for him now. Keep on keeping on and knowing you are being lifted up!

Claire said...

Praying for you all, sweetie!

Cxx

Anonymous said...

Hey Patrice, just a little concerned since you were talking about the post office not accepting packages if its not in Matts name I just wanted to make sure you recieved a package I sent with a Scrapbook in it? I think I put yours and Matts name on it but not so sure now. I also wanted to let you know I am still praying for you and your family.

Karen said...

Hi! I read your blog probably 5 times a day for updates on little JOnah-but I've never commented before.
I wanted to let you know-I have 2 boxes of breast milk bags that I am going to send you-and I live in Japan on a military base (my husband is a marine) so they are cheaper on base so I am definately going to go buy some more and send them to you.
I think Jonah is so cute and adorable and I think you are doing great-I can only imagine what you have to go through each day!!

Karen

Mike and Molly Spivey said...

Did you get any bottles from the NICU? When our boys were in the NICU they sent me home with tons of little 2-4 oz bottles. At our NICU that didn't want you to use bags because of leakage. Anyhow, we use those bottles to freeze the milk in them.

Kelli said...

I will be sending out some bags for you as long as you dont mind if the box was opened! if you are okay with this please let me know!

Anonymous said...

Hi Patrice,

I saw your page on ebfriends and have been reading about little Jonah. He is just beautiful. My name is Jenn and I have rdeb, I'm 29, lived with this disorder my whole life and I want you to know that all those feelings you have are ok! Sometimes I still get mad and sad and angry at the whole deal I've been handed, but those days are far and few in between. It takes a lot of energy to face the day with a positive outlook(even without EB!), you wouldn't be human if some days you woke up and were like...well this just sucks! So I would say your feelings are completely normal and let yourself feel whatever it is when you need to. And please don't be too worried about Jonah's future too much, yes people can be mean, but I found with a positive attitude(him and you) he will be surrounded by plenty or friends in his life who care about him. And with those gorgeous eyes what girl wouldn't want to date him?? Girl you better watch out, lol, he already looks like he'll be a charmer. Yes, those of us with EB have been given a different path than most, but it doesn't mean it still can't be beautiful. And it seems with such a great family he has, he will have a wonderful life. Trust me, I know, Ihave the same supportive family who have encouraged me my entire life. I'm just finishing my master's degree and working and have a wonderful boyfriend. Sometimes it seems like a lot more work, but having EB has taught me many life lessons I appreciate. Well, I write too much, I hope this day has found you well and little Jonah is having a good day. Feel free to email me(jennkinnes@hotmail.com) or find me on ebfriends if you have any questions.

Take Care,
Jenn
from California

Ronda said...

Dear Patrice,

I think about you and pray for you, Matt and Jonah every day. You are feeling so many things that are normal for a new mom. I wish I could give you a hug! You are doing a great job! I'm going to send you some of my extra milk bags, they are Lansinoh and I loved them, much better than the Medela bags. Hang in there!

Jo said...

Long time reader, first time poster (um...I think anyway). I have a 5 month old and sooooo struggled with the idea of taking medication for my depression. I did some research and found that a good quality B complex VITAMIN really helps...who knew? Also, my husband has issues with anxiety and (again with the research and taking to my chiropractor) he started taking fish oil supplements and almost immediately felt some relief.

I'm now on a low dose of Zoloft (25 mg) and taking my B Vitamin (erm...when I remember) and feel much better overall.

You are in my thoughts and prayers often, friend-I-haven't-met-yet.

:D

http://minnesotajo.blogspot.com/

Amber Schmidt said...

you can freeze breastmilk in just about anything that is freezer safe! I froze my DD's in plastic containers that I found in the canned foods aisle! They stacked in my deep freeze. They were at least reusable.......

Debbie,mother of two said...

I am sorry that you and Jonah have had some bad days. Some of it is just new mom with no sleep and the other problems and top of it all. I hope tonight goes better and I am thankful that you have family near to come help. I am sorry that you can't just go and do all those things you would like. I am praying that God continues to help you through all you face. Hang in there all three of you.

fulksfam said...

Ditto to the ice cube tray suggestions. I don't know how you go about thawing milk; when I use bags, I fill a bowl or one side of the sink with warm/hot water and put the bags in it. But here's something that I do as well that might help, depending on how you thaw:

When we got married, we got the ice cube trays from Bed/Bath/Beyond that make long, skinny cubes that you could slip into a regular water bottle with a small mouth opening. When I've frozen in those, I can just place the "sticks" of milk into the bottle directly and warm the whole bottle.

I don't know if you'd want the trays that I have, since you're already going to be getting a plethora of trays and baggies from your faithful readers :) But I'll send you one, and if it doesn't work for milk, you and Matt can use if for your water bottles or pass it along.

Chris' mom's side of the family was in town this past weekend, and his mom was telling her mom about Jonah and your blog... about how raw and real your writing is, and what an impact it's had on her. We are all so thankful for you, and are so glad that God put Jonah in the belly and arms of such a Godly, loving mama.

Amy said...

Hey girl -
Send me your address and I'll drop my bags in the mail. I have some Medela bottles that I'm not using as well as Dr Browns. Would you like them as well?
APinkRN@aol.com

Michele said...

Wow, the part you wrote that starts with "it's crazy how you can love your kid so much" really hit home with me. I have a special needs child and that is so true!

Amy B said...

Patrice,
Lots of random bits of info here, please take what helps & disregard what doesn't! :)
Breast milk bags... I'm just headed back to work & pulling out bags of frozen milk (my child is 5 months old). So far, every bag of Dr Brown's breast milk storage bags that I've pulled out, as it's been defrosting, has split down the seam. ARGH!!! So 2 things here- 1. maybe don't buy that brand (I contacted the company, they sent me 100 replacement bags, I only purchased 25, and they assured me it was a bad batch and they were very sorry. I guess we shall see if that is true or not) 2. Defrost frozen bags in a cup, so if you do lose any, you can still "save it" and pour it back into the bottle.
To figure out how much your child should be getting per feeding there is a calculation (I realize Jonah needs more, but just for frame of reference...) It's 2.5x their weight divided by the number of feeding they take in per day. So, my child weighs 13 lbs (he's small....) and typically feeds 6x/day. So 13 + 13 + 6.5 = 32.5 (I just round to 33) divided by 6 is appx 5.5 ounces per feeding. Hopefully that should help you know if he's taking in somewhere near what he should be.
Also, I had to visit the lactation consultants many times & read many books about breast feeding, etc (my guy had some weight gain issues & acid reflux & such). I'm no expert, but some things I've learned that may help....
You can add to pre-pumped milk for up to 24 hours. So, hypothetically... if you pump at 7 am, and get only 3 ounces, and then you pump after he goes to sleep that same night and get another 3 ounces, you can add it to the previous 3 ounces to make a larger bag to freeze. It kills me to freeze a smaller bag b/c they are so expensive. I saw you've been using the medella bags. Yowza those bags are pricey, but I know that a lot of mom's love them. What I don't like is that they only hold 5 ounces, and if my guy takes in 5.5 ounces, I really prefer my bag to hold at least 6 ounces. I've used the Dr Browns (those that split on thawing and i lost milk), the Lansinoh (haven't had any problems and they hold 6 ounces!) and the medella. I really like those, but like I said, wish they held more and were cheaper!!
Once I'm done needing to pump & freeze, I will send off whatever I have left! :)
Blessings & Prayers.... continually...
Amy In WA

erika said...

I would also probably not trust the safety and sterility of regular freezer bags. I also used the Lansinoh bags and really liked them a lot. I felt like kept the milk really fresh. You could also look into the Gerber bags as someone else suggested but I don't know how much that really saves you if you are not using playtex dropins bottles (mainly because I didn't like them as well as the Lansinoh bags). Good luck. You are amazing :) Jonah is lucky to have you as his mommy!!!!

PS I have some other things to say about pumping but don't really want to post it here for fear of mean comments. If you are interested, please email me and I'll share with you. erikaklitzke@hotmail.com

Becca A said...

I can't imagine the roller coaster ride you're on... I just keep praying for Jonah and wishing nothing but the best for your whole family.

On the issue of milk storage bags you can buy cheaper bags (they're all basically the same anyways), store it in covered ice cube trays (although it has to be used pretty quick from what I hear), or a lot of times on sites like Craigslist people are looking to get rid of partially used boxes, and it's pretty obvious that the bags haven't been used, just the box opened :)

Good luck!

Anonymous said...

I tried to find the site I referred to when I was pumping but couldn't find it(it was over 2 years ago)but the best tips I found was after you pump just put the parts in frig in a big ziploc and then wash at the end of the day so you don't have to wash everytime. since they are in the fridge you don't have to worry about the milk that is on the parts. I know I read somewhere that freezer bags are just fine but they are bigger and I'm not sure that they are much cheaper but try ebay for a bulk deal on bags. I know some breast milk bags just work better, feel sturdier but I found that gerber bags worked good too. THis was the best tip I remember to freeze your milk bags flat on a cookie sheet and then when frozen they are flat and store in your freezer much better. Hope this helps, you are doing a great job I can only imagine how you feel but just remember you are doing GREAT!

Carrie

jensoup said...

If you have a childrens hospital near you stop in...the NICU and PICU have storage containers(not bags though) and will usually donate them. When are son was in the NICU they always told us to take home as may as we wanted,often the nurse would give a huge bag full. Otherwise try your doctors office-often times they'll give you sterile specime containers-though there only 3-4 ounces-but free is free-and you can reuse those.

Anonymous said...

I love that you still have your sense of humor. I think that's a good sign. =) Hang in there girl!
Daisy (Alabama)

Anonymous said...

When my daugher was in the NICU the nurses gave me disposable bottle liners and little rubber bands. It worked just fine. I ended up buying other ones, but the liners worked just fine. I've suffered from depression in the past, while at the time I thought the clouds would never part. Eventually they did... thanks to medication and alot of praying. I also think that sleep deprivation can't help all of this stress. Thinking of you. C

CHATTY CATHY 1975 said...

Hi there! DO NOT feel bad about your lack of sleep. My daughter is 7 months old and JUST NOW started sleeping from 8pm - 3am (prior to this she was up three orfour times a night). I had to move her into a bedroom with her 2 yr old sister - and they BOTH sleep fine. Shoulda done this LONG ago. One would think that since she's my 4th child - I would know by now... heh

As for Breast milk storage bags - the medela ones ARE expensive - but convenient in that they strap over your pump and you don't have to rinse out milk bottles all the time. The milk just goes directly into these bags. There is a secondary brand that IS MUCH CHEAPER - LANISOH is the namebrand and they are in a lavender colored box. Target carries them.

You are in my prayers DAILY sweetie!!

Anonymous said...

I have always gotten the Lansinoh bags from Target and they are typically 10 dollars or so for a box of 50. They worked quite well for me over a period of several months. Just thought I would share a bit of advice and guidance. Your family's story has been so touching to me. Thank you for sharing the ups and downs.

Ebeling Family Blog said...

Doesn't pumping make you feel like a real woman?! hah...right....
when you have the time, read Psalm 46.
Just a great reminder of who is in charge, even when we feel hopeless.
Still praying constantly for you, Matt and Jonah!
By the way, Jonah's Great-Grandpa Rudy contacted me and told me about a fantastic Christian muralist(he saw I was an artist) What a thoughtful man!!
~em

Merrilee said...

Can you just refridgerate most milk and only freeze and cycle through a percentage? That's what I did while I was in school to cut down on storage costs.

I always thought my pump was saying "one more, one more" as in one more letdown, since I was always in a hurry between classes. :)

Susan said...

Hey Patrice! Sounds like you are a little bit more refreshed. Being a new mother gets better by the day. Hang in there, you are doing great! By the way, Target has Lansinoh breast milk freezer bags on sale this week and they are a lot cheaper! You should definitely try them. Take care!

mandi @ it's come to this said...

I'm so happy you have family coming for the weekend & that you have that support in general. I hope you take advantage of it!! I know it's hard to do. Even with a healthy baby it's just easier to do it myself b/c I know it will be done "right" ... but you know your family WANTS to help you & you of course know he'll be in safe hands. So I hope you & Matt can have some "down time" for a minute. Keeping you & Jonah in my prayers!!!

Kathleen said...

Hi, I'm sure you will be gifted with many storage bags, but should you need them asap, other brands might work well, and this link has different types and prices, just FYI.
http://www.nextag.com/breast-milk-storage-bag/search-html

You are right, its a newborn thing, I had the same thing with my son, but the EB adds many new elements a to the new mom worry.
I send your family good thoughts and healing prayers daily.

Anonymous said...

I know this is late on the BM storage, but I agree with HPMY. We were an inpatient at Children's Hosp. shortly after our son's birth. I of course was pumping like mad because I was engorged. They supplied me with a kit of sterilized plastic containers in all sizes, 1 oz, 2 oz, 4 oz, and 8 oz. I found these were the best and reused them after sending throught the dishwasher with heat dry. They provided the perfect sizes. I would lable them with the date with a sharpie and then use alcohol to get the markings off. Make sure you leave room at the top to expand if necessary.

With regard to disposable bags and leaking, I never had a problem. I purchased a plastic shoe box with a lid and kept it in the freezer to keep the bags from getting bumped.

I think 3 oz. every three hours is an average. I had a wonderful LC who told me that I don't eat the same amount each meal and why do I expect him to eat that way. He will eat when he is hungry and stop when he is full.

BFing does get easier with time and you become more confident and assured. Growths sputs are the worst, but only for a few days.

You are doing a great job. I know you don't have a ton of time on your hands, but maybe a LC could reassure you. Personally our Pediatrician had a LC on staff and my Insurance Co. sent out a nurse too.

All of the best.
Melissa

The Peoples Family said...

We had the hospital give us a huge sack of sterile urine sample cups with lids and we used those, after each use threw them in the dishwasher so we weren't respendiing $ on bags plus saving the trah dumps of some extra plastic.

Rachaellh said...

Patrice,
It is easy to forget how many hormones surge through our bodies while we are pregnant. The hardest part for me is when they are LEAVING after the pregnancy. They emotional roller coaster or a new baby and the hormone drop off are really tough and have to be exponentially multiplied with Jonah's special needs. I am so glad that you have such an amazing support system. I hope that you are allowing them to minister to you as well as Jonah. The greatest gift my grandmother gave me when my first child was born was to come to my house and help me clean. She mopped floors, cleaned the kitchen, and "forced" me to sit on the couch and lavish in my little boy. So often people want to help, we just need to let them. You 3 are in my prayers every day and I thank you for sharing your thoughts and feelings and allowing us the privilege of praying for you all.

jen said...

In terms of the breast milk storage, I use the Lansinoh type freezer bags- you can get them at target. They are about 1/2 the cost (or less) of the medela ones, and they work great.

Anonymous said...

Dear Patrice, I am so glad to hear you sounding more like yourself. I am glad that you see some humor. It definitely helps. Please know you are under absolutely NO obligation to blog daily, even if you were "negative" in one. You blog on your timeline, not anyone out here reading them! Also, it does sound like a lot of new mommy/baby adjustments. I used to cry when my husband asked me why I never went anywhere. Until he tried it. Then he stopped asking! However, you DO have a WHOLE HOST of things to consider with the EB. Please give yourself the space to adjust and experience it. I have thanked God for the internet and the connection you can get to other parents of EB kids so that you can learn from their experiences. I think it will be a long hot summer for you. We live in NC after all. However, you will all start to roll with things. But I will continue to pray and pray (and stalk) and read and try to support you as I can. Jennifer in Southeast, NC

Anonymous said...

Glad that Jonah is breathing and eating better and I hope and will pray that he continues to improve!

p.s. one thing you may want to consider in deciding whether or not to take antidepressants is that I have heard that they can be addictive and very difficult and painful to wean off of

P.p.s. I am so glad that you have people around you who can help you! Having a baby with medical problems can be very taxing I am sure. I am glad for you that you have support from your family and friends

Anonymous said...

Do you have air conditioning in your home so that Jonah will be more comfortable in the heat of the summer there? Let me know please.
I am still praying for you and Jonah and all the difficulties you are facing!
Romans 15:13 "Now may the God of hope fill you with all joy and peace in believing, that you may abound in hope by the power of the Holy Spirit"
Hugs!!
Luann in WA

Melissa said...

I'm glad you're feeling a bit better, Patrice! Life can be overwhelming...life as a new parent even more so...and life as a new parent of a child with a medical condition can make it seem really crazy at times. Hang in there, know that you are absolutely normal in feeling out of sorts and stressed sometimes. :) Melissa

Anonymous said...

Hi Patrice, you are so wonderful for sharing your ups and downs. It is quite the ride that you are on, so thank you for your honesty. No one is in a position to judge you. Only help you. Regarding Jonah's eating, I wonder if you've tried feeding him from a cup? Despite his age, some babies really take to this method of eating, especially since bottle feeding must really hurt poor mouth. Perhaps if you tried with sugar water and moved to milk, it would introduce him to the concept.

Kat said...

I asked the makers of Ziploc when I was nursing/pumping this very question and there response was that you should not use regular storage bags for breastmilk because although they are food safe they aren't sanitized to as much a degree as breastmilk storage bags and due to babies immature immune system they advise against it.

Just a FYI.
Kat

the*4*of*us said...

You are too funny! I was pumping gas last week and decided the gas pump was talking--and thought of you!
Have a beautiful day!
Oh, have you tried to add some probiotics to Jonah's milk? That would do WONDERS for fighting infection, as well as healing any blisters along his digestive tract that might be there (or irritation)

maurerjen said...

1. My pump talks to me too, except the dang thing cusses at me. It says, "what the hel*. what the hel*, what the hel*," which is exactly what I feel like saying somedays when I only get a couple of ounces. :)

2. I can echo so many of the sentiments of your post, and Jude isn't battling with anything as remotely dangerous as EB. He's still not sleeping through the night, and five months of chronic sleep deprivation would make even the most sane among us a little crazy. And I wasn't ever that sane to begin with.

Kassie from tx said...

I use gerber bags because they are way cheaper. I'd put about 2 oz in each bag and then freeze it lying down in the freezer so it was flat in the bag. Then I'd stack up all the bags in a tupperware in the freezer to double prevent freezer burn. The gerber one are WAY cheaper than medela though!

jessica said...

With regards to the anonymous comment
"p.s. one thing you may want to consider in deciding whether or not to take antidepressants is that I have heard that they can be addictive and very difficult and painful to wean off of"

I just wanted to let you know that I have been on Zoloft for several years, including during my pregnancy and now with nursing my baby. They are addictive, in that they are helping your body regulate the chemicals that need to be regulated. It isn't like you have to have them like it's an opiate or narcotic. They just help you to do what your body should be doing and isn't because of crazy hormones!

I struggled for many years with depression, and refused to seek help because of the stigma. After I finally broke down and talked to a doctor, I finally have my life back. Do I like taking medicine to make me feel normal? No. Do I do it because I deserve to feel better, and my family deserves me to feel better? Yes. So please, if you feel that you have reached the point where you are past just normal PP blues, talk to your doctor. There is no shame in reclaiming at least part of your life! Good luck!

Erin said...

I told my husband about how your breast pump talks to you and we laughed because mine talks to me. It always says "We're not home, we're not home!" So funny!

Always praying for you and your family...

Lavonne said...

Patrice - just wanted to suggest that you take a 15 minute walk everyday. I was able to get off my anti-depressants once I started this daily "down time". It's not only good for you physically, but more importantly at this point of the game....mentally as well. Use this time to listen to your iPod, walk hand-in-hand with hubby, or just vent, praise, or cry on God shoulder. You'll be amazed how energized you feel afterwards. Try it for a week....you'll feel the difference! I promise!

Marie Evelyne Lanathoua said...

I Used to store my milk just in the playtex bags, so freezer should be fine. Nip the corner and pour!

I wish you the best!

we are praying for oyu!

Elizabeth said...

Hey Patrice,

You may already be doing this, but one thing that helped me when I hit a 2-month-post-partum wall (tired, cranky, hormonal, etc.) was to start back up on my pre-natal vitamins. I think the nursing/pumping can REALLY take it out of you, and those pre-natals boosted my energy and mood by the second day back on them.

Hang in there, girl.

We're praying in Texas...

lauren said...

Patrice - I first found your blog via Mckmama's...and I have a feeling we only live a couple of miles apart :) I'm a Wake grad and currently a United Methodist minister in W-S.

I just wanted to let you know that you and your family continue to be in my prayers...and if you ever need any 'real life' prayers, I'm here!

I haven't read all the comments, but if no one else has mentioned it, I used to have the same problem with uploading video to blogger. The problem is that their limit for videos is extremely small, so the video has to be really condensed or you just have to use a short clip. Right click on your video file to find out how big it is, then you'll know if it will go through.

Blogger won't tell you the file is too big, it will just "load" for days. I learned that the hard way :)

Blessings to you through the dark days - you will once again feel the intimacy with God you so crave! GOD is bigger than everything that you are facing!!!

blessings,
lauren (pastor, Central Terrace UMC on S Main)
www.laurensbaby.blogspot.com)

Jen said...

Patrice - You and your family, especially little Jonah are in my prayers. I found your blog through one of my high school friends and I enjoy reading the adventures of Jonah on a daily basis. My thoughts are with you all.

Anonymous said...

I work in a baby store and instead of the medela storage bags...Lanisoh Storage bags are something like 11.99 for 50.

Julia said...

Lansinoh milk bags are $9.99 for 50. I just bought some this past weekend and they were on sale for 8.99 at Target.

elizabeth said...

i think you are doing an amazing job and will be fine. hang in there. my paryers are with you.