Wednesday, April 1, 2009

questions answered

1. Yes, I did get a haircut. Thank you for noticing. I figured I better get it cut before we came home from the hospital... won't be leaving for a while. I wanted to get it cut before Jonah was born, but was afraid it would exacerbate my fat face issues previously referenced here and here.

2. Yes, Jonah gets new blisters every day. Some are cause and effect. Some pop up for no apparent reason. We have to lance and drain them with a sterile needle as soon as they come up. If not, they pull the skin around the blister and it just gets bigger and bigger. However, we've drained several the last couple days that have just refilled and become bigger. Frustrating.

3. Coming home. We put thicker dressing on his chest and shoulders and bought soft padding for the car seat and car seat straps. We loosened the straps, put him in, and then tightened the straps, so we didn't have to maneuver his arms too much. He wore a blue little gown with a satin lining and no insides seams. Jeannie (my best friend Kathryn's mom) is working on some EB clothes using patterns EB folks have sent us. I would LOVE to have satin, seamless undergarments he could wear that would protect his skin so that he could wear all his regular clothes (we have tons and tons between what was bought for Gabe, Jonah, and hand-me-downs) on top.

4. Cloth diapers. We are now stocked up on FuzziBunz (but I'm still scared of the elastic so haven't tried them yet), but have been using the little fleece concoction my mom came up with. I've also heard good things about Happy Heinys and Thirsties. Basically, he just can't have elastic around his legs or abrasive velcro or anything that's not soft. Soft has taken on a whole new definition now.

5. His hands, feet, arms, and legs are looking much, much better. His right arm and hand were almost completely healed, until we unwrapped his arm one night and he freaked out (that really bad night at the hospital). We had to get it wrapped back up, but apparently did some damage to his hand because the next night his right hand and fingers were covered in blisters yet again. I'm still having a TERRIBLE time getting his little thighs wrapped up to his groin. The backs of his thighs are where he gets the worst blisters, and it's also the HARDEST place to wrap, by far. The tubifast rolls down and the transfer or lite slips down throughout the day. Or, if it does stay on, it flips down over the tubifast and gets soiled during the day. Any ideas??? What works on the tops of their fat (but cute!) little thighs? He had a big place where the skin just came off on his tooshy today, so diaper changing is not fun. I keep double antibiotic ointment and Aquaphor on his whole bottom, but I know it must hurt when he poops or pees. It's also VERY hard to clean the poop off the raw place without hurting him further. This is really disheartening because his bottom has been in fairly good shape for a couple weeks now.

6. Although he's just been snorty today for the most part, last night he was having a lot of strider (high pitched breathing noises - not sure if this is something you have or do, but you get the idea). It was so loud that my little sister could hear it in the living room (our bedroom is right off the living room, but still). I called the doctor today and they are supposed to be working on scheduling an appt with an ENT. I'll call tomorrow and see when it's scheduled for. His breathing is making sleeping very difficult. Not only am I worried about him, but it's so loud, it literally keeps me awake. We got an angel care monitor so I'll know if he stops breathing for more than 20 seconds, so that helps with the worry. BUT I still worry a lot, and it's just loud. I am a very light sleeper.

Those are all the questions I can remember off the top of my head, so if you have others, you'll have to pose them again. For some reason I just don't have time to go back and reread all my comments since he's been born. :) Although I'd love to since I'm now in a more focused state of mind.

His dressing change was rough last night. Not the worst, but he was unhappy and wiggly most of the time. Matt's mom is helping me during the day and my mom is helping out at night. Matt helped a lot the first night, but he's having to get up and go to work, so he needs his sleep worse than I do. I, however, am very tired. You know you're really tired when your breast pump talks to you. It either says "youmightbedumbyoumightbedumbyoumightbedumb" or "you'reheidiklumyou'reheidiklumyou'reheidiklum" depending on my self-esteem level at the time. I told Jonah the other day that my whole self-worth depended on him. No pressure or anything.

99 comments:

Mommy Attorney said...

Haha - I had to laugh at the last one. My pump talked to me too, although I've forgotten what it said.

Continuing to pray for you. I hope you get in with the ENT soon. Just know that the listening to him breath all night thing? I did that with my daughter. Be sure and nap during the day.

Patti said...

You are so brave and have such a great attitude. We pray for you guys everynight when we say prayers with our daughter. God is faithful and He has great and mighty plans for Jonah.

Praying that all goes well with the ENT tomorrow.

Misty said...

Okay...so I guess it was a good thing that I couldn't pump years ago when my son was tiny - my self-esteem would never have bee able to handle it. Thanks for a great chuckle! LOL! Still praying and I read the blog every day - even if I don't have time to post. God has got it all the time in His hands even if we don't feel it and I am so glad to be able to lift you all up to Him as you are challenged daily to care for precious little Jonah.

The Burgess Family said...

LOL!!! My pump taked to me a lot too when I was pumping!! Too funny! Glad to know you are adjusting ok and doing well with the little guy at home!

amber said...

I am so glad you're home! Will be praying that there's nothing seriously wrong with baby Jonah's breathing! Like Patti said, our family prays for your family every night before bed with our 2 year old. She loves seeing pictures of baby Jonah, especially with no "owies!"

RLR said...

Love the last bit. Hope it always says, "youreheidiklumyoureheidiklum"

Sorry to hear about the newest blisters and the stridor. Still praying for the Williams Family!

ashpuck said...

I am cracking up at the pump talking to you! I can remember hearing things too.

I'm so glad everything is going well. I'll be praying for Jonah's breathing.

~Ashley

Susan said...

Okay- I am laughing SO HARD! My pump talked too...I would sit in the bathroom at work, and with nothing else to do I started hearing "Yom Kippur Yom Kippur Yom Kippur"- I told the girls I work with about it. It said something else too, but I can't remember what! My husband thinks we're all nuts! Thanks for the laugh. Next time I pump, I'm going to listen for "YoulooklikeHeidiKlum". That will do tons for my self-esteem :)
And, by the way, I'm not even jewish, so I don't know why I hard Yom Kippur.

Still praying and so happy that you are home!

Susan in Indiana

Rainbow said...

although I hadn't asked a question, I was glad to read about things that have crossed my mind.

still praying for Jonah (& you & your hubby :)

Janel Waters said...

Oh bandaging the butt - my daily activity - I'm going to air my EB secret - are you ready - all of my blisters are on the insides of my legs, backs of my thighs, under my boobs, at the top of my butt crack - yep, I just said it!

Every blister I have is in the hardest place to bandage. The only thing that I use is either transfer or lite. So basically if I have to go pee, I have to change bandages - or peel them off and then stick them back on. Even with the safetac adhesive, it hurts sometimes.

The best thing about the transfer or the lite is that you can cut to shape. You might go though a lot of bandages, but can you put a piece of lite or transfer on his butt and then just change it out when you change his diaper - would keep the pee/poo off - as for the back of his thighs, cut little slits in the edge of the lite/transfer so that it lays flat in the curves of his legs instead of rolling down - that is what I have to do under my boobs.

Ok - so that was probably TMI for many comment readers - sorry to those readers! I hope some of that helps Patrice! - seriously feel free to call me if you have questions!

Hope said...

My daughter has a horrible stridor due to severe malacia to her larynx and trachea. I hope Jonah isn't battling that also, in some cases it can be serious. I hope the ENT appt is a good one!!

Praying for your sweet boy always!!

katie said...

Ok, here are my thoughts from one EB mom to another.

I'm the one who sent the fuzzi bunz and I can tell you that I understand being nervous about the elastic. We didn't have any problems, but if I were you I would cut a piece of transfer and put it on his leg under the elastic. That will provide some added protection.

The thighs are horrible to wrap. I found that I have to use roll gauze otherwise the tubifast doesn't have a chance of staying up. If you are already using roll gauze, I know one family that would take a small piece of the curlex and put it on top of the transfer, that way it didn't touch their daughters skin, but would provide some added strength to keep it up. I never tried it so I don't know if it would work or not.

And as far as the place on his bottom, I heard of another mom who would get disposable breast pads and cover them in aquaphor, then put one on each "cheek." I think she used the Gerber kind that didn't have a plastic back or a sticky back. They were much cheaper to change after every diaper change and would keep the wound free from poo.

And finally, my pump talked to me too, and my friends and I have had conversations about what they said to us. Mine said something about going to Target.

Katie, mom to Ella RDEB

jennhenders said...

Hi, Patrice. You don't know me but I go to church with Kat (Hilton) and have been following your blog. Hang in there. We're praying.

Just a thought about the raw skin on Jonah's bottom. When my oldest son was born with imperforate anus he had a colostomy bag. We had to use Stomahesive powder whenever the skin around his stoma got raw. It sticks to raw skin and doesn't have to be cleaned up. It's a powder that comes in a squirt type bottle. You "spray" a tiny little bit on the raw place and we used to wet it ever so slightly on the top with a damp finger to set it. Then put over the top whatever you need. We even mixed it in with homemade diaper rash cream. Don't have a clue if you can use it w/ EB but it might be worth asking your home health care nurse or an ostomy nurse. Stomahesive powder. Always allowed our son's breakdowns to heal over night.

Praying for your family.

Jennifer Henderson

Heather said...

Still praying for Jonah! And for you! Mommas always have it rough with newborns and then to add all the extra care he needs has to be exhausting! Hang in there!

Carrie said...

Diapers- try a contour or a fitted with a fleece soaker, no elastic. I like snugglebottoms by babybunz. They are super cheap and hold up well. They have very loose elastic, the legs do not touch my daughter's skin. You might be able to have some fleece soakers made, there are nice patterns. You can also search hyenacart. I also have found that Northern Essence Diaper cream is better for us then Aquaphor or A&D (my daughter does not have EB, but is super sensitive and is allergic to zinc and sensitive to Aquaphor). Oh and just a big FYI, you can not use Aquaphor or A&D with cloth diapers without a liner. If they get on the cloth diaper they will not come out and will cause the diaper to repell moisture (meaning leak city). Northern Essence is cloth diaper safe.

Covey and Justin said...

I use Kushies AIO diapers and if you lined them they might work for you. They don't have elastic and they use velcro closures. You might just get some polar fleece liners to be soft against his skin. I bet if you published some patterns there would be some mamas out there willing to sew you some undergarmets. I know I would.

Melissa said...

I swear, Patrice...you've got me cracking up with that comment about the breast pump!!! Wish I could help with ideas about the bandaging...with Bry it was always his head wrapped in turbans, so I don't really have any advice for chubby little baby thighs. Hopefully someone will, though. Hang in there...and keep that sense of humor!

Kristen said...

hahahaha...I had never thought about my pump talking. I'll have to listen more carefully the next time. (not that almost everyone else hasn't commented on that...)

Hopefully you will find some help for Jonah's breathing. I have a good bit of medical knowledge, but not a ton...so not sure if it's an option, but can you slightly elevate his bed at the head? Of course it would depend on what is causing the strider in his breathing, but if you feel like asking the ENT that would be an easy and cheap help...

I pray for Jonah all of the time...I mean seriously, all of the time. Between praying for him and Stellan I have almost called my own son both of their names!

I will continue to lift you all up in prayer.

Alyson said...

I swore my breast pump was calling me a "Wacko, Wacko, Wacko, Wacko" :0)

You guys are all in my prayers!!!

Alyson

http://wellensfamily.blogspot.com

cK said...

Your son is adorable!

I just came across your blog and was wondering if you are following a gluten free diet seeing as you are breastfeeding?

If not, you may want to google search about the gluten free diet(much faster then me explaining it!).

When my son was a baby he had lesions on his buttocks and legs much like you describe, that we had to wrap. (I've been through those nightmare diaper changes where skin comes off in your hands) Finally he was diagnosed with Celiac, which I know is not the same as what your sweet babe is dealing with, however if you do some research you will see some common ground (your baby's diagnosis was part of our initial discussion with docs.)

I hope you understand my garbled message, and don't mind my asking the questions.

Many prayers sent your way!

iamnotaweirdo said...

EB mom here. For Jonah's thighs try soft tube socks with the ends cut off. They keep everyhthing snug and in place, and you can throw them in the wash. We use tube socks to keep dressings on my daughter. Works for thighs, elbows, knees. HTH.

Pati and Family said...

glad you are all back home.
i pray for jonah and family everyday.
you all are in my thoughts, in many ways i feel almost as if i know you.

i am praying with you

pati from long island new york

stiner0305 said...

iam happy to hear that he is doing so well. do you make your own homemade baby wipes?? i know when my son had rotovirus when he was a baby his bottom was raw and the homemade wipes seemed to help a bit

mbo said...

I've been following your journey for a few weeks now and want to say congratulations for getting your sweet baby home.
I jumped over to Zach's blog from yours and have a permanent smile on my face from that little guy. He must be an inspiration for families like you:)

Elizabeth said...

First time here...

First off your son is precious and so amazing! God has blessed you with such a treasured jewel!

Secondly, I admire you for keeping such a positive and Christ-like attitude during such a time as this. Many people would not see that during our times of weakness and trouble is when His power is made perfect! I am overwhelmed everyday that we serve such a sovereign and graceful Father.

And lastly, I have to laugh about the pump story. My daughter was in NICU for 5 weeks and then PICU for 6 weeks, I have sat in that cold, unwelcoming room with the industrial sized (looked more like it could milk a cow!) breast pump... I know there were definitely times that I thought it was talking to me and the sad thing is that I talked back!

I leave you with one of my favorite scriptures that has gotten me through the last two and half years of having a child with special needs.

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jer 29:11 NIV

Many prayers and blessings sent your way,

Elizabeth - Austin, Texas

I'm The Momma, That's Why! said...

I'd go for the Heidi Klum thing every time!

I can't tell you how good it is to hear you sounding soooo relaxed and comfortable now.

Welcome home - for sure!

Grannie in Florida

Anonymous said...

Yay! The day seems to be going well. Again, i pray for you and Jonah and Matt! Wishing for beautiful sunshine that brings a warm beautiful smile across your face and lights up your house and lets you sing with the birds! You're doing fantastic, keep it up! We love you all! Robin from TR and the gang!

Beth said...

LOL!!! SO glad to see that I am not the only one whose pump talked to them in the wee hours of the night!!!

You do have a great attitude, a great spirit!! Keep doing what you guys are doing!! The Lord has certainly blessed you!!

I still can't believe that little Jonah is home!!! Hurray!!!!

Praying everyday!

Erin Edwards said...

LOL about the breast pump. I used to think it said "ithinkicanithinkican" I LOATHED when I had to pump. I really think you are awesome pumping for Jonah. BM really helped Ethan's skin/weight gain. We saw an immediate change in both when he was weaned. I don't know how you keep up with pumping though... I'm really impressed with your dedication.

I doubt the swaddlebees would work for you b/c they do have some elastic. It was better for Ethan than the disposables (they just rubbed blisters/rubbed his skin off), but the elasticized spots did still rub blisters sometimes. I'd use what is working for you or what other EB kids are using. But know that you are always welcome to try what Ethan used.

For the pain when wiping... with Ethan we had to really coat his bottom heavily with aquaphor and that would help. Is Jonah's skin dry too? We had the problem of BM moisture being zapped immediately by his skin & then it was so caked on that it didn't want to come off & we hated to rub so hard b/c that rubbed off skin. One thing that helped was using handmade cloth wipes put in a wipes warmer with a water & glycerin (we'd buy a big bottle from the Costco pharmacy) solution.

Ethan wants to tell Baby Jonah hello again and that he wants you to give him an "easy, easy hug and kiss" :)

Erin Edwards said...

See if you can get in with Dr. Kirse (ENT). He is such a kind and gentle man. We love him.

April said...

I admire you for being so strong and having such a great attitude. I seriously don't know if I could be near as strong as you are! You are doing a great job and it's so wonderful that you are home with your baby! I look forward to reading daily updates on your blog. That's great your breast pump talks to you! I wonder what other things you will hear it say? :)

Anonymous said...

I have no experience with EB but I do have experience with cloth diapering and your trouble with keeping the bandage up on his thighs made me wonder if some sort of a snug fitting fleece diaper soaker/cover may help hold the bandages up. Your mom is good with sewing? What about a type of short that goes on over the bandages and over a diaper. Perhaps some sort of flap could be fashioned allowing you to get to the diaper without having to take the shorts up and down. Can you use any elastic at all? What about elastic that was encased in the fleece? Something up by the thigh to just be a little snugger to hold things in place? What did the other EB moms use for that issue? Seems like there's got to be something out there...

Sara Jo said...

as i am sure you have already been told you are not alone on the pump talking to you...although i don't remember mine saying heidi klum....

as always, your spirit is beautiful. we are thinking of & praying for you often...

Kathleen said...

Hey there,

I'm a first time commenter. You may want to consider getting a noise maker for yourself, just have it on low, so you don't hear all the little noises he makes (if you're comfortable with that). My babies have always loved their noisemakers, so Jonah may too!

lisapooh98 said...

I have been following your blog for awhile, and am soooo glad that Jonah is home! For some reason I was reading your profile again, and I noticed it said that Jonah is in the hospital fighting for his life...guess you better change that one. :) WooHoo!
Lisa
Hebron, KY

the*4*of*us said...

that breastpump thing is hilarious--you got it so right! I'll now laugh every time I pump!

Debbie,mother of two said...

Sorry that I am a few days late in wishing a happy birthday to Jonah.Happy birthday! Just to let you know that I am praying for the dressing changes that they go well.Trust in the Lord about the breathing problems and I hope you get in to see the ent doc soon.

laura said...

No idea if this would work with EB, what with having to carefully and slowly do things so as to not damage his skin, but as far as wiping poo: if you knew right when he was about to poo, would you be able to take off his diaper and let him poo on a cloth, in a bowl,something like that? Maybe it wouldn't work with all the dressings he has. But we practice elimination communication part time with our daughter, and if she poops IN her diaper, it all gets squished into crevices and fat rolls and is a nightmare to clean up without rubbing on her skin. But if I realize she's starting to poo, I just whisk her to the potty or put a prefold under her, and it only takes a little bit of dabbing from a wipe to clean it up!
Good luck!

jandkland said...

You are so funny about the breast pump! (:

Thanks for the honest answer to people's questions. It helps to know what you're going through with your sweet boy. I continue to feel so sad that he hurts. I wonder how this changes as EB children grow older and more able to express their feelings about their condition. I am praying for you, that you will be able to sleep. It's tough for any new mom, but I know your restlessness is tripled. I am praying for your family, that they have the stamina to continue being the strong supports for you. And I pray for Jonah, whom you've shared so willingly with us, that he will feel less pain and that his skin will begin to heal more quickly.

--Kelley in GA

Nicole said...

The only dipes that don't have any elastic are prefolds and contours. You could use a wool wrap that has very little elastic in it. Luvibums has very little elastic (they are wool covers). It's a 2 piece diaper system. The inside snaps in the liner and has no elastic. What would be touching him is soft cloth. They are pretty expensive but the wool is actually very good for the baby's skin as opposed to sposies or some other cloth diapers. Please let me know if you would like any other info because my Sister just researched all this a year ago for her newborn because she didn't want to use disposables. Bless you!

Anonymous said...

I am a pediatric physical therapist and have treated burns and wounds for years. When I needed kerlex to stay up on thighs, I would wrap it to the highest point on the thigh, come around in-between the legs from back to front, then wrap it around his waist, around his back, and then back around his belly in front. Does that make sense? You just end your wrapping around his little tummy and that keeps it from sliding down the leg. I used to go around the tummy like 2 times. Now, I don't know if this will work for you or not as I don't know if you are able to put the kerlex right on his skin but maybe you could somehow figure a way to work this in.

Good luck to you - you have a beautiful family!

Leedra said...

I never could get the pump thing to work right...but that was 29 and 27 years ago. They are so much better today than they were then.

Still praying for His guidance in Jonah's life with the things you have to do that others don't have to deal with. And of course for Jonah's pain go away.

michelle said...

LOL on the pump conversations. Mine has a hum/song to it also, but I never thought about putting verbiage to it! Praying for the dressing change as we speak. Kiss Jonah for us!

(note: when I reread my comment, I accidentally wrote 'pimp' instead of 'pump'... a literal "LOL" over here!)

Anonymous said...

I am laughing my head off about the breast pump...I have so been there. I thought Jesus was trying to tell me something one night through the radio. Turns out it was just remote interferance.

We are praying for a good rest of the week. That Jonah's breathing and bum bum gets better soon. Love you guys!

Nathan, Lindsey & Mason

Anonymous said...

My daughter had very loud, goofy, high-pitched breathing as a newborn as well. It would keep my husband & I up all night with worry. Our pediatrician diagnosed her with tracheomalacia/laringomalacia. (The trachea & larynx are soft & floppy) She has a moderate and non-obstructive case, so the loud, weird breathing is just that. The ENT said most babies outgrow it by age 3, but it is much better by age 1. She was diagnosed after a small scope was inserted through her nose & down her throat--probably similar to your little guy's feeding tube. Hopefully that is all that is going on with him and you can start getting a good night's sleep!! So glad to hear you are home!! God Bless.

Yellow Daisy Momma said...

There is a great cloth diaper site called www. wallypop.net - The owners name is Sarah and she is very sweet and knowledgable. She sews most of the items she sells herself so she may be able to give you some ideas for Jonah.

Linda B. said...

Hi this is Linda, owner of Happy Heinys. I was directed to your blog because you mentioned Happy Heinys. Anyway I wanted to let you in on a secret of ours ;)
Sadly we have far too many EB babies whose arents have to contact us for diapers. We can work with you in you need it and depending on the severity we can work some system out. We can special make the HH diapers with no elastic and we do have snaps as well. If the pocket diaper is too rough we can do the sherpa heiny hugger with a fleece cover, again no elastic if preferred. Plus the big point is we do offer special pricing for our special babies. So if you need some help feel free to contact me at lbyerline@gmail.com
Linda Byerline
www.happyheinys.com

Pam said...

What a mom. You rock, "Heidi" :). An inspiration indeed.

Cathy, Kris and Rose said...

Wow, Patrice! I'm so glad to hear that Jonah is home, safe and sound, where he belongs. I know how stressful bringing home a newborn is. I think you should be nominated for the supermom award! Keep up your positive attitude, and I'll keep up my prayers! God bless you and your BEAUTIFLUL family!!!!

Patricia said...

I would say don't worry about reading or responding to comments. Get your rest and take care of your baby. You need babying too. You are going through some really high stress times. May the Lord give you the strength you need. Hug on that little guy.

mandi said...

Just reading your answers gave me a glimpse (very slight, I'm sure) into what you do each day. Your attitude is amazing (even on posts when you're venting). You, Jonah & your family continue to be in my prayers!

Staci said...

Okay I am laughing too- nice to know others have breast pumps that talk to them!!!! You are not going crazy!

K said...

Hi, I offered to make some diapers for you. I have a design in mind that has NO elastic for the shaping. The shaping is in the construction, like the curves of a bra. If you're interested, please do email me at kimi@newconceptions.com

Stephanie said...

Oh I love the breast pump one..:)

Praying for Jonah nightly..hope you are able to get into the ENT soon and that his breathing issues resolve!

Michele said...

Just wanted to stop by and say hello and tell you I think of Jonah many many times throughout the day and apparently at night too- last night I dreamed I was holding him and I was being ever so careful not to hurt him. He was so sweet in my arms!

bryan, christy and connor said...

Hi! You have no idea who I am...but I just had to laugh at the breast pump talking to you comment...mine always said 'haveagooddayhaveagooddayhaveagoodday'. Too funny.

My family thinks and prays for you and your absolutely ADORABLE son, Jonah! My son was also in the NICU after birth...they are so strong and little boys know how to fight hard :)

Kristie said...

HAHAHA no you know what is bad.....when you are up pumping in the middle of the night and u wake up from sleeping sitting up on the side of the bed and the pump is on the floor and u suddenly realize ohh no that is what that loud buzzing sound is.

Hang in there once you can get a rountinue down things will be easier. Try to sleep during the day some if you can.

Still lifting the fighter up in prayer~~

Kristie

Storybook Woods said...

Oh I feel for you. I had to breast feed my daughter every 45 minutes because of her heart. I remember at 4 months, I just lost it and in the middle of the night I called the suicide line (not because I was thinking suicide but I did not want to bother anyone in the middle of the night) a man answered and I said I need to talk with a mom who breast feed. I just cried on her shoulder. She was soo sweet. I do not know how I made it through that first year but I did (she is now 18) God carried me through and He will you too. I am praying for you. Clarice

Anonymous said...

Welcome home! You're doing a great job!! Jonah is a lucky guy to have such a special mom.

Anonymous said...

As a mom who pumped and pumped and pumped some more, I laughed at your last comments...nice to know you have a sense of humor through all of this! Aren't you happy God made us that way!?
Our family continues to pray for yours. We celebrate Jonah being home!

Jennifer W. said...

WOW. I had totally forgotten that my breast pump planted mean evil messages in my head. It really liked to tell me "You'regoingtofail. You'regoingtofail. You'regoingtofail." But then I quit with the breast milk, talked to a therapist, got some Prozac and didn't listen to those messages anymore. I'm glad yours tries to build up your self esteem every once in a while. Especially when it's right :)

Diana Lopez said...

like most people say keep your chin up..we are still praying for Johan....

Baby Bird said...

Dear Sweet Patrice:
I am praying for you...now more specifically! I will never again complain that I am too busy or overwhelmed..."We always thank God for all of you, mentioning you in our prayers. We continually remember before our God and Father your work produced by faith, your labor prompted by love, and your endurance inspired by hope in our Lord Jesus Christ." I Thess. 1:2-3
Love & Prayers!
Aimee Pence

Monkey Tots said...

Hi Patrice. I am following your blog with much admiration. Your son is the cutest baby! I am a seamstress and wonder if we made a satin one piece, and then turned it inside out so the seams are on the outside and the inside, against his skin, is flat? Just a thought!

The Wells family said...

Haha you pump story made me laugh! mine talks to me too! Also about the legs and keeping the bandages up. I was at target today walking around and in the baby isle there are these baby leg warmer! they are very very soft look like a tube sock without the foot part! maybe that could work for your sweet boy! I am praying for jonah everynight as i put my 3 to bed @ 8!

Anonymous said...

It sounds like cloth diaper wise you have pocket diapers. The aquaphor might clog the diapers making them repel liquids. You might think about fitted diapers and wool covers. Babylegs also makes wool legwarmers, and wool is naturally antimicrobial for the tops of his thighs. If they do get a little urine on them they would be fine. If you want more info let me know, I'll be glad to help!

Merrilee.Dilley @ gmail.com (no spaces)

Dan and Sarah said...

my breast pump says, "ru paul" and "booty call". So, take heart, you're normal! :)

Megan @ Hold it Up to the Light said...

HA!!! I love the pump talk! :)

Alisa said...

I love what your pump says to you!:) I'll have to pay more attention to what mine is saying to me.:) Just an FYI, my baby girl was a preemie and had a TERRIBLE strider for several months. It was so severe that she that her epiglottis was folding over itself and actually looked like a burrito! Not only was her breathing very loud but it put a lot of strain on her heart to breathe so her heart rate was constantly elevated. She also had a very difficult time eating and growing. We finally resorted to surgery. In Feb. (at 6 mo. of age) she had what is called at Epiglottoplasty where the ENT trimmed the epiglottal tissue to open up her airway. Although she has other medical issues the surgery did help so much with her breathing and her heart rate immediately decreased to a more normal level. Just thought I'd share.:) So glad you are home at last.:)

Alison said...

I LAUGHED out loud when I read that your breast pump is talking to you! When our son was first born his noise machine would talk to me!!!! I thought I was going crazy but figured it was exhaustion! hahaha!

I will pray for good rest for everyone!

avbernat said...

I am so happy for you and matt that jonah is finally home!!!!

Hang in there, it's always so tiring that first year, but what a blessing to be in your own comfort zone with your ENTIRE family. It's so great.

My pump talked to me too, but with my first born, we were so broke that it was a manual and at the wee hours of the night, I'd actually make my own rap song! HA!

You are all onto a great wonderful fun filled adventure with Jonah! I am praying for a smoother transition the next many many years!

Vonda said...

Patrice, I'm amazed at your positive attitude even in the midst of your exhaustion! You crack me up about the breast pump talking. So glad Jonah is home with y'all! You are a great Mama, and I'm gonna pray that God will give you the most endurance and strength you have ever had in your life and that you will be able to get some much needed rest too.

Shannon said...

Sounds like you're doing an awesome job!

I was pumping at 2 am once, fell asleep and THEN realized I forgot to attach the collection bottles.

I pumped about 6 oz of milk from each breast onto my lap and floor.

Elizabeth in WS said...

It's ok, my pump talks to me... it encourages me on, and after 7 months, it says, "Keepitupkeepitupkeepitup"! Your story is an inspiration!

Stephanie said...

Yes, get him to the ENT about the strider. My boys get that with chronic croup and it is SO scary.
Oh, sweet baby, still praying for miracles and believing God for continued treasures in this darkness and that you recieve all of His riches in this place.
Isaiah 45

Steph

LMBO at the pump comment.

Jalita* said...

You sister in law left a comment on my blog, and I found it too late...but I emailed her back just 2 days ago. I have more types of cloth diapers I could send you--if you want them.

DylHayd@gmail.com

Michelle in Va said...

Continuing to pray for sweet Jonahs healing,pain free dressing changes, and continued strength for you and Matt and your entire family. That little angel is such a fighter and was definately put on this earth for a special reason. He couldn't ask for a better mommy and daddy. I have said it before but your story has so touched my heart. Praying for you all.God is so good!!!!

Kristen said...

Very funny. My pump talked to me too!! I am so very happy for you that you are home with baby Jonah. I continur to pray for him every night.

Amy said...

Don't worry about the breast pump talking to you, they all do... HA! I can't remember what mine would say but I remember constantly sitting there willing it to change the rythm just enough that it would stop saying whatever it was saying. LOL

Continuing to pray for Baby Jonah!

Julie said...

Hello..I'm a new reader to your blog (I'm not even sure how I got here to be honest!) but I just wanted to say that I read it all yesterday, and your story is amazing. And Jonah...gorgeous! I love those little blonde curls...

I keep you all in my thoughts and prayers, especially that beautiful little guy....

Curlyqfun said...

OH my gosh - my pump talked to me too. My husband thought I was crazy.
This is my first time commenting.
I have been following since Jonah was born & praying for you.
So glad you are home.

Hope James Wilson said...

Celebrating with you for getting to bring Jonah HOME :)

Penny said...

so glad that you are home! I hope that soon the dressing changes get easier and not such a struggle. As far as the tired thing..... welcome to Motherhood!! ha ha The first couple months are pretty rough. Nice thing is you quickly forget HOW tired you really were.

I had to laugh outloud at the breatpump talking to you..... I had to pump exclusively. BTW if your supply starts to act up let me know there are some great drugs out there to pump you back up. But pumping round the clock for 10 months was really hard. I used to hear the pump in my head and sometimes when I was really tired I would catch myself "humming" the pump rythym....

Praying everyday.........

Lynne said...

Can I just tell you that you have got to be THE BEST MOM IN THE ENTIRE WORLD??? Your little boy seriously does not know how lucky he is to have a mom who worries and cares and loves for him the way you do. This faithful blog reader is absolutely in awe of you.

Anonymous said...

HeidiklumwishesshewasyouHeidiklumwishesshewasyou.

Liz @ Sugarplum Creations said...

YES! My breast pump talks to me too! I was awake around the clock the first few weeks with our preemie daughter, and my pump had the oddest things to "say" at 2am! Oh my goodness, this gave me a laugh :)

I'm so happy that you're home. We keep Jonah in our prayers.

Hugs,
Liz

Anonymous said...

Hi Patrice,

I'm pretty sure your pump is saying "You mighty Mom!" You are such a strong trooper! Jonah is so fortunate to get such a wonderful set of parents!

We're still praying for you all!

Jon and Andrea Hauser

The Eadle Family said...

had to laugh about the pump! hope you get some sleep soon!

Marie said...

I'm so glad Jonah is home finally. Half of the battle is having your baby with you.

I think you are doing a great job and just want to say to always follow your "mama" instincts. Especially with an EB baby, nothing is trivial and you are the only one who knows all of Jonahs strengths and weaknesses. Don't let ANYONE, minimize anything that is different in Jonahs day.

As time goes on, you will find the easiest, least painful ways to help him heal, and that is all any mother wants for her child.

We are all praying for you and your beautiful boy here in Texas. Keep up the GREAT job you are doing as his mommy.

Geri Kelly said...

Have you seen Tubifast Garments yet? They look like thin tights and may help with your bandage issue.
Best regards,
Geri

Lauren said...

My pump talked to me too!! After seven months of pumping, it no longer talks and I really can't remember what it was saying either. Too funny! I am praying for your sweet baby boy!!

Erica said...

LOL at the Breast Pump talking!!! I can so imagine it, I think I must not have listened hard enough! GLad to hear you have some help! Still praying for him to have more improvement!

Sassypants Wifey said...

Keeping the prayers going! I hope your routine gets easier. I am sure you are glad to be home at least. Lots of luck!

Anonymous said...

hi patrice! if you havent already, check out diaperswappers.com and post a question about your quest for a comfy cloth diaper. The mamas are so helpful and with so many users you are bound to get a wealth of information from people who have tried tons of things :) And if you are new to the site, just go to "Diaper Chatter and Q & A" and post there. PRAYING FOR YOU THREE!!!

*allison evans lowe*

~missionary to haiti, home church of pinedale :) OH and graduated from west, i believe a year before you (99)... just for reference sake ;)

Anonymous said...

Patrice (and Matt and Jonah)
Just want you to know that we are still thinking about and praying for you and Jonah. He has come so far! God is GOOD!! The thoughts you share are so inspiring and you have a gorgeous little boy that you've taken home. I am amazed every day at the love coming y'all's way. It's a God thing!! :)

Lura said...

I had totally forgtotten about the breast pump talking, but mine did too! Ha ha.

The Hixson Family said...

HaHaHa! I can vividly remember my pump speaking to me too! And here I thought I was the only one :o)

M J said...

ROFL about the pump! I HATED pumping, so I can understand that! You looked absolutely beautiful pregnant, so cut it out about the fat face! ;) I'm praying for you guys all the time!

Joye said...

You don't know me, but I've been following your blog for quite some time now. I've just recently had a baby myself, and we're going on our 4th week of being at Duke with him.

I had to comment on your talking breast pump; I literally laughed out loud, then read it to my husband. After my 1st week of late night pumpings, I told him that my pump "talks". I love that someone else has experienced this, too!!

I think about you guys often. I'm praying for you, Matt, and Jonah and I'm so happy to know that you're at home with him!

Keep the faith...