Thursday, April 16, 2009

jonah - thursday, april 16th

Good morning! I went to bed earlier than usual last night, and may have to make that a habit. Usually I've been staying up until after his midnight feeding (so at least until 1 am), but last night I slept for about an hour and a half and just got back up. I was COMPLETELY out of it at midnight, but this morning, feel like I've had a little more sleep - I wouldn't go so far as to say refreshed - but not half-dead, so that's good.

Speaking of being tired last night...
When I pump, I have to write his name, date, and amount on the storage bags (I fool with all of this just in case we end up in the hospital, I want his milk labeled). But last night, I was so tired, I was writing on them with my eyes closed.

One says - Name line: "Jonah Williams (hope)" Date: 12-15-09
(um... what? Apparently I was having a very optimistic, you'reheidiklum kind of a moment in my sleep...)

The other says - "Jonah" and then on the date line it says "Elastic in work" (???)

I'm really tired.

Jonah is doing well. He's still eating well for the most part, although he'll eat 115 cc one time and only 60 the next. I can't figure him out. If he would start eating more and consistently throughout the day, I'd probably eliminate his midnight feeding (we always have to wake him up for this one since he's still pretty tired from his dressing change and the drugs), and just feed him at 3am and 6am.

He's still having some stridor at night from about 10pm (when we finish his dressing change) to midnight when we wake him up to eat. I don't know what the deal is or what's causing this or why it's only isolated, but it still freaks me out. I went to bed crying last night worried about him. I hope we're not missing anything. When he gets a little older, we may make a trip to Cincinnati just to get a comprehensive look at him from an EB perspective . I'd love for him to be checked out by all these specialist doctors who have EB experience. We do have an appointment with Dr. Morrell in Chapel Hill (a pediatric dermatologist who sees several EB patients and trained under Dr. Fine) in early May, so I'm excited about that. I wouldn't want to travel very far with Jonah before that anyway.
I think Matt's mom and I are going to take Jonah out to Lowes later this afternoon. I need to pick out a light fixture for over his dressing change table they're putting in down in the basement. It will be Jonah's first non-doctor's office outing. I'm nervous and excited, but figure Lowes is a pretty good place to take him - big, open, airy - not many women or children who will be trying to touch him. Why do people think they can just walk up and touch your pregnant belly or your baby? All social code goes out the window. It's so strange. I don't want to have to go mama crazy on some poor, innocent well-wisher. HELLO, the bandages should tell you something. Back off, woman!!!

This may be my only post for the day, especially if I try to get in bed before 1am.

Please continue to be in prayer for Jonah's stridor issues. Please pray that it's nothing or that if it is something, it will be obvious, and we will catch it in plenty of time.

All I keep thinking is 47%... I want to hear the Voice of Truth, not the voice of the deceiver.
A few pictures Leigh took while she was here. Leigh is also the one who started the Facebook prayer group page. Thanks for all your hard work, Leigh. We appreciate it so much!
Still me with no make-up...

82 comments:

Kirsten: said...

Adorable!!! Love those cheeks!!!

Toni :O) said...

Gosh he is SO precious. I never woke a sleeping baby...I wish you didn't have to...you'd probably feel more rested. Hang in there though...hopefully it will get easier for you soon. Continuing to pray so hard for this little guy.

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

Love the new pictures! Oh, and that middle one reminds me so much of Jakey. I can't WAIT for them to meet! Oh, I'm stuffing the birth announcements today and hope to get them in the mail to you tomorrow. HAPPY!

Ronda said...

I would say to get as much sleep as you can! The first few weeks you are going on adrenaline but eventually it will catch up with you. I love to read your updates but take care of yourself first, so you can be the best mom to Jonah. My cousin just a had a boy a week before Jonah was born, and he just dropped his midnight feeding, so Jonah may be close to doing that too. Prayers continuing for you all!

Sarah said...

Patrice,
Just a thought on the sleeping. I know Matt has to work, but here's what my husband and I do. One of us wakes up for the midnight and the other takes the 3 am feedings. I think we should always try to get to bed by 10, but that doesn't always happen...It would be wonderful if it did. Anyway, the UNINTERRUPTED sleep is what we find makes the difference. So if you get from 10-3 or Matt gets from 12- 6 uninterrupted, you both end up a little better off. My husband and I both work, but I still always feel super guilty about this arrangement because it interrupts his sleep too, but it ends up better for both of us in the long run and you might find you like being up for one or the other feeding specifically. I find I don't mind the 3 am feeding at all if I don't have to wake up for the midnight feeding. Maybe it will help:-) Oh, and when I was pumping, I just phased out the midnight pumping so I could sleep.

Anonymous said...

"And the voice of Truth, tells me a different story, and the voice of Truth, says "Do not be afraid". And the voice of Truth says this is for my Glory.... I will chose to listen and believe...The Voice of Truth.

Just a song that came to mind while I read your blog today. I pray for strength and peace that surpasses all understanding for your family. God reigns and he holds you guys in the palm of His hand and close to His heart.

I thank Him and praise HIm for your family. Little Jonah is precious and he is Loved! The Lord WILL take care of HIm. I believe he WILL have a long, good, happy, joy-filled life here on earth!

From~ a caring Canadian momma who reads your blog and lifts you up in prayer. Carlee

Kristy said...

He is adorable!! Glad you are getting some more sleep. As long as Jonah is eating well during the day, I'm sure you can safely eliminate the midnight feeding (he needs his rest, too!).

Oh...and Patrice....make up is highly overrated. ;-)

Kristy
Mom to Carson, EBS

Anonymous said...

Still a 'beautiful' family.

Jill said...

Hi! I found your blog ultimately through Angie Smith's Bring the Rain (and the few blogs in between). I am now officially one of your blog-stalkers and more importantly prayer warriors! After witnessing miracles through these blogs of all places, I am a firm believer in the power of prayer as I know you are too. I read most of your blog yesterday and have prayed and will continue to pray for precious Jonah and your family. I pray for your and Matt's and especially Jonah's strength, and I pray that you will continue to feel God's presence in the midst of your pain and trials..God has a GLORIOUS plan for Jonah!

Much love,
Your new friend in Christ!
Jill :)

Anonymous said...

You are beautiful - in the eyes of your family AND in the eyes of God. Prayers and God's angels continue to surround you. What an inspiration you are!

Shelleyrae33 said...

Hello. I just got turned on to your blog by a girlfriend of mine. First, I want to tell you about how BEAUTIFUL Jonah is!! Oh my gosh, that little face is just precious! Secondly, I want to let you know that I will be praying your you and your family. My husband and I just welcomed a new son into our home in Sept '08 who is 100% deaf. It is AMAZING what God can do with these little, special-needs babies. When times are tough, just remember that God gave our babies to us because we are strong enough to handle them. If you would like to read more about my family you can stop over to http://lifeofstambaugh.blogspot.com

Take care and God bless!

Anonymous said...

Still praying for Jonah in CA - and what a beautiful family (with or without makeup)!

I can remember how hard those late night feedings were with my son and although we didn't have the additional concerns that you have with your amazing and strong little boy, I just wanted to say that although it doesn't feel like it right now, it will get better and even though you won't stop worrying, the worrying will get easier to bear. All that love that you put in to feeding him and caring for him in those late nights pay off (and ARE paying off!). You might know that now, but as time goes on, you feel it more and more. You two are amazing parents and your love is inspiring.

- Lee

Hope said...

I think it's normal for a stridor to come/go. Even Ava's stridor isn't here all the time. Here's a link to a video of her on youtube, if you want to hear her stridor.

http://www.youtube.com/watch?v=Z1z47wpFjGc&feature=channel_page

Jonah is beautiful! I hope your trip to Lowes is a great one!

April, Mom to Heavenly and Earthly Angels said...

Hope your trip goes well, He is such a precious lil thing. Get some well derved rest. Prayer that his airway issues subside.. Praying for Jonah!!!

Alyson said...

WOW, he's going to his first REAL "Big Boy Store" :0)...... How fun is that!!!

Have fun Jonah!!

Alyson

Sonja said...

I laughed out loud about the milk labels! That's hilarious!

Whenever I read your prayer requests, I pray right then and there...keep them up--it's so nice to know exactly what to pray for!

Erin Hingley said...

It bothered me when people touched my baby without asking and he didn't have bandages on! I can't imagine how it frustrates you! Praying for more rest and healing. Lots and lots of love!

-Erin in va

Bess said...

Patrice:

Your family is so beautiful. I've been praying for you since I stumbled across your blog. The milk bag labels made me laugh out loud :)

I've seen these signs on baby car seats before http://mytinyhands.com/index.htm

Would it be helpful to make one for Jonah like this that says not to touch at all? Perhaps it would stop people from just reaching for him.

Bess

rameelin said...

You look great, Patrice. All new moms go through months of no make up. You surely arent alone! Jonah looks fantastic too and we are praying for clear answers, a sound mind and distinct wisdom for Matt and you. Jonah is under the care of the great physician. Nothing is hidden from Him! How freeing to know that your little guy is so protected. We're thinking of you!

dg darling said...

Seriously, he has got to be one of the CUTEST babies I have EVER seen! That's saying something cause I have three kids who were pretty darn cute as babies but he gives 'em a run for their money! I'm still praying multiple times a day/hour for your cute little family. I hope you can get him to eat more soon so that you can get more sleep. Are you sleeping at all during the day? I hope so. You are like Super MOM!!! Hang in there!

erika said...

What a cute little muffin Jonah is! Wow, you do need sleep...wonder what your labeling was telling you?! Too funny! I think if I would have had to have pumped in the middle of the night I would have written similar things though. It was hard enough to wake up and nurse my daughter all through the night and I didn't even have to deal with a silly machine too. You are super mom for sure!

Good luck with the Lowes outing and tell those crazy women to stay away from Jonah. Geez, it is crazy that women and childen (especially ones with snotty noses) like to come up and love on your newborn. WHY?!!!!!

Have a nice day :)
Erika from IL

jewelrylady said...

Love those cute cheeks! Mamma, you look beautiful even without makeup!!!!!

Hang in there and know you are being showered with prayers!

Enjoy Lowe's sweet baby! Going to your first "Manly" Store. :o) Have fun Sweetie!

Baby Bird said...

You are still just as gorgeous without makeup!!!!!!!!!!!!!!
And look at that B E A U T I F U L, I mean, H A N D S O M E boy!
Still praying!
Love you all!
Aimee Pence

Anonymous said...

I totally agree with you about the touching thing! One easy solution is to buy one of those bug nets that goes over your stroller and car seat. You can still totally see through it, but it puts up a barrier and someone would have to work hard to touch him.

Debby from IL

Wanda Wilkinson said...

Just a few comments, again Jonah is beautiful..he takes after his mom who does NOT need make-up. You are right pregnant women & babies make adults do wierd things. I agree with you, I do not like strange people touching me, so I definitely did not like strangers touching my babies.
Of course as beautiful as he his, everyone is going to stop & admire him.
Keep in mind when you take him outside, if any of his breathing has to do with allergies(all this pollen) he may have a little change in his breathing later.

Jonah is beautiful..I look at his pictures multiple times a day, I have to get my "jonah" fix.

Prayers will continue going up for all of you & do take advantage of getting sleep when you can. Going to be when he does is the best thing you can do..cleaning, washing, blogging, etc can wait.

God bless, hugs & kisses

Anonymous said...

I very much enjoy reading your blog. I can tell you something from experience. I met my husband when I was 30 years old. He was in remission from cancer and we were told he had a 20% chance of surviving 5 years. His doctor always told me (when I was freaking out)that SOMEONE had to be in the 20% or there wouldn't be a 20%. He was right. We were also told we would never have kids. Well, 10 years later and 3 kids later, we are praising the Lord. I know it is hard but keep the faith. You are doing SO well. It is a blessing to watch you and to pray for you!

Karla said...

I continue to pray for all of you guys. Jonah is so gorgeous! It looks as though he's gained some weight lately (but again, it's hard to tell since I'm viewing you all from afar).

I'll second the post about make-up being overrated. =) You are beautiful, inside and out.

RLR said...

Glad you got a little extra rest! The milk labels were hysterical. Perhaps label them the next morning?
Hope you enjoy your outing to Lowe's - it's such a lovely day.

Heather said...

My son has frequent stridor associated with his reflux. The Pediatrician assures me he will outgrow it as he gets older. One thing that helps it is to run the shower really hot with the bathroom door closed to get it all steamy, then just sit in there for a little bit. For some reason, it really clears it up. I'm not sure if Jonah's EB would be bothered by the extra humidity or not though.
Praying often for you all! Praying that the sleep you do get is restful.

Lis said...

Jonah--as always adorable! Mom--you don't need makeup, your a beautiful whose face shows your love for Jonah. We are praying for all of you...

Mandi@ It's Come To This said...

"Elastic In Work" ??? Too funny!! I'm glad you went to bed early:) Still praying for your strong little guy:)

Les said...

I've become a regular reader and thought I'd introduce myself. You are a great mom!!! and Jonah looks too cute in his red diapee :)

Anonymous said...

Jonah is so beautiful! When I read your posts, I love to look at this sweet little face and those beautiful blue eyes. I say sleep when you can because it is so hard when a baby is young. Also, for the stridor have you tried a cool mist humidifier. My son gets croup a lot so I am always running the humidifier. Another thing you could ask the pediatrician about is to give him some xopenex through a nebulizer. That helps my son as well. Get some rest and god bless you all!!!

Elizabeth said...

They do have signs, or you can create your own, for preemie's strollers or car seats that tie on that say that they shouldn't be approached or touched. Basically, it says something like...please don't touch, I am a special baby and so on...but, don't be afraid of offending people who walk up to you. As a micropreemie mom, I had to get rather aggressive with people at times, but if it upsets others, they'll just have to get over it. Nothing is more important than your baby's health as you are well aware...
We are praying for you always...

Shannon said...

Oh wow, I remember being THAT tired. It's almost like being tipsy and I remember being scared to drive.

During one late-night pumping session, I forgot to attach the collection bottle & fell asleep. The milk was all over the place:)

I hope your trip to Lowe's is fun. Perhaps he'll enjoy the change of scenery...what a good idea for a 1st trip.

Feel ya on the touchy thing. But, there is just something about a beautiful baby that makes people want to touch it...maybe it's an instinct, to protect and nurture.

People should know better, though. I'm trying to help my 3 year old understand she needs to ask permission first and then just touch TOES.

val said...

Jonah is such a cutie! I love the 2nd picture of him.

The labels on the breastmilk...priceless

Marie said...

You are doing wonderful things with/for your family. Jonah looks beautiful. I read your blog daily and don't always post but want you to know we are all out here saying prayers and rejoicing with you when Jonah has a good day. Don't worry about makeup, there will be time later! Sleep is more important.

My grandson has EB and I always believed in the old wives saying "Never wake a sleeping baby" even for feedings. He'll let you know when he is ready to eat. And his sleeping is just as important. You are doing a great job!

Hugs from Texas

Sonja said...

Jonah is looking so good and so are you without make-up ;-) Still praying for you and your little one and Patrice, try to rest as much as you can. I am sure all your blog readers would not mind you missing a couple of days' updates if you got more sleep.

Bethany said...

Sweet sister, my heart aches for you. I know nothing of the life you're living. All I can do is pray and ask God for His best for your family.

I have been called to lay my children on the altar. To give them wholly to the Lord, but it was no where near the same. I was not asked to do it at every diaper change, every strange sound, every pink spot on their skin.

You are not walking to the throne room alone. You are being carried there on hundreds of prayers, prayed by hundreds of people.

Although I am not able to read your blog as often as I would like, Jonah is often on my mind and in my prayers. As is your whole family.

Praying for you. Praying for peace and rest and comfort. Praying for healing and hope. May you be blessed beyond what you can imagine in the coming days.

Patti said...

You are to be applauded for continuing to pump during all the other tasks that you have related to Jonah's care. I seriously admire you and someday Jonah is going to have great respect for all the things that his Mama did for him. His wife is going to have a lot to live up to!! :)

Misplaced Country Girl said...

I think I see a touch of orneriness in that middle picture! I swear he just gets cuter and cuter. I can't believe how big he is getting. He looks so happy!

Jenny said...

He is such a cutie!

Good luck with your trip to Lowe's.

Kathryn said...

Trice, your milk labels made me laugh out loud! Wish I could have stayed around for the Lowes trip. Love you! ---Kat

Heather said...

Patrice, Thank you so much of the pictures of your handsome boy. They brighten my days! You may be tired of all advice you are getting, but I thought I'd take a shot anyway! I had a NICU baby and had to pump and feed until I stopped pumping at 6 months. It is very difficult! I thought about quitting MANY times before 6 months! But, one thing that was helpful for me and my sleep was this: I would start my pumping at 10:30 p.m. and then wake the baby at 11:00 p.m. for her feeding. Then I would go to sleep right after that feeding. Somehow, that made me feel a lot better because it didn't feel like the middle of the night when I went to bed at 11:30 or 11:45! If you (and or the docs) think it is okay, then you could keep your 3:00 a.m. wake time and get just one extra hour of sleep! I know how difficult it is to pump AND feed a baby at every waking! You are doing an awesome job. Keep up the HARD work! It is so beneficial to Jonah!

Anonymous said...

I have never posted before but I have been following your precious story almost since the beginning. I just want to let you know that Jonah's story has touched me and my family's life in a very special way. My sister and I also have EB (although a very mild form) so Jonah's story hits close to home. What has been so special is the spiritual strength that is so very apperent in your posts to the blog. Being able to praise our king in the midst of a storm such as this is the highest form of praise in so many ways and I thank you and your family for that. I have a prayer with my 2 boys each night and Jonah is always at the top of the list. Keep up the good fight! In Christian love, Kent Cornelius-Canyon, Texas

Michelle said...

I have zero experience, but it occurred to me that his stridor after his dressing change may be from the pain medication. I know my husband snores REALLY loud when he's taken some sort of sleep aid. Maybe the drugs are relaxing his airway and causing him to be noisy. I also know that my husband snores the loudest when he first goes to sleep at night, especially if he's tired. Maybe that is what is happening with Jonah.

You are amazing and Jonah is blessed with a wonderful, supportive family.

I second the comment about taking care of you and finding a way to get more sleep. I know, it's much easier said than done.

The Anderson Zoo said...

What a cutey. I have been praying for him & for you. Don't get discouraged b/c of his eating "inconsistencies" (ammt. he is eating). That could be a baby thing as well. My son was a preemie & I had to write down how much he ate. It seemed like he ate a ton at one feeding & then the next he only took 1/4 - 1/2 of what he had previously eaten. It was SO FRUSTRATING. The Dr. said as long as he was gaining weight it was fine & that he would eventually even out on ammt. of eating. Hopefully that will encourage you a little.

I know you are doing a great job as a Mom. God knew before time that Jonah was going to need a special Mom to take care, dress, notice when something is right/wrong with her baby. Out of all the women in the world God chose YOU!!!!!!!!!

I don't know you but am praying for you and your precious baby.

Stacey said...

It is so true that when you get pregnant you lose your mind. And I am so sorry to say it never is the same again. Your labels cracked me up! I still do crazy things like that and my youngest is 16 months old.
Your family is beautiful!
<><

jennifer said...

best wishes from iowa. my parents adopted my brother with eb when he was 3 months old. i was 5. i never fully considered what they went through caring for him, especially through his toddler years. it struck me reading this entry, though... as an infant and child most people were caught off guard by the bandages, blisters and all. people backed away. with both her children, my mother ached for some stranger to want to come up and love on her babies. i have kids. it is annoying. but rejoice when you have times of such annoying normalcy. :) God hears. we keep you all in our prayers.

Michele said...

I work with special needs babies and many moms I know have attached a cute little laminated tag on the infant carrier that says something about "look at me but don't touch", you know to let strangers know to keep their hands off.

Wanda Wilkinson said...

another post, but try to focus on 53%!!!!!!!!

Jonah is a Miracle & he hangs in the higher numbers...

hugs & kisses

That 2nd picture is saying "I am up to something" wait until I can crawl" haha!

Debbie,mother of two said...

Adorable pictures! They milk labels were so funny. Don't worry about the make-up you are beautiful without it. Try to get some rest when Jonah does. Know that I am praying for you all. Lean on the Lord for you strength. Praise the Lord for the recent reports. Hang in there. Praying for the eating and breathing problems. You two are such good parents.

Anonymous said...

Hello..So happy to hear of your good day...both my boys had hard to figure out eating patterns that young...that's just baby stuff...Casey stridored as an infant sometimes when I put him to bed...if his vocal cords are a bit swollen, it could just be positional...lying on his back was always worse, so try changing his position when you hear it or patting his back a bit..You know he has no severe issue right now, so don't lose sleep over it yet...He is such a handsome little man and he has so many of us praying for health for him and strength for you parents...Exhaustion is part of any new baby homecoming..throw in the meds and dressing changes and you have a right to be exhausted...take care of yourself best you can..he needs you to be well..visiting an EB center will give you some peace of mind knowing someone with experience is looking over him...and it will reassure you what you are doing is the right thing...All our love,
beth

Anonymous said...

PS: Always think positive and always believe your son will beat the odds...

Anonymous said...

First let me say that Jonah is one cute kiddo! Also I have a non-medical, but seemingly logical stridor guess. Could it be the pain meds causing his airway to be a bit more relaxed? Like when someone has a bit too much to drink and starts to snore when they normally don't? Just a guess but would be a very non-scary answer and does make sense, right? Oh - and the eating more sometimes and less at others sounds very normal, and is the reason formula babies average higher weights. Bottle fed babies are "encouraged" to finish the bottle. Nursing babies eat what they want and we can't analyze it ounce for ounce! If his output is good and his weight is ok that's what matters!

Anonymous said...

At some point you're not going to be able to read all of these comments :) And I long for the day when your blog is boring, with nothing to say but "took Jonah to baseball practice today....cooked dinner...paid bills....went to bed :) Until then, I am praying!

Jodi said...

Continuing to pray for you, your husband, and sweet Jonah.

Leedra said...

Who needs makeup? Thanks for sharing the photos. Still praying for all of you. Jonah is so precious!

Grams said...

Here is something great they have at TARGET to put on the car seat to keep the "touchers" away. We're praying for you all.

http://www.target.com/Babys-Cozy-World-Mesh-Cover/dp/B0015VY4IW/qid=1239930787/ref=br_1_36/187-6077192-9000356?ie=UTF8&node=13760421&frombrowse=1&pricerange=&index=tgt-mf-mv&field-browse=13760421&rank=pmrank&rh=&page=1

Anonymous said...

You look durn good for someone with no makeup! Just remember that! I also want to tell you how much I appreciate your specific requests for prayer. That helps SO MUCH from the "praying for you' end of it all! I love having something to really focus on and think about. I want you to know that I do NOT have medical training, just the "on the job' mom kind. I wonder (and please ask your doctors) if the stridor is worse from 10 to midnight possibly because he is so worn out from the dressing change and more "relaxed" because of the medication? Could this be part of the reason why you see it so isolated at this time of night? Just a "curious minds want to know". I really need to quit using so many quotation marks! I am praying and will continue to pray and keep you in thoughts. You are so wise to keep reading and learning and advocating for Jonah. Even when the material is hard to read and absorb. I am so sorry that you have to read it but so thankful that you are and are advocating for him to receive the best care. Jennifer in Southeast, NC

Lauren said...

I pumped for many weeks and months throughout the middle of the night because my girls were 28 weekers. I understand your zombie-like state, but I don't think I ever mislabeled something like that (haha). I am still pumping and giving my girls breastmilk in a bottle so I just wanted to let you know that I understand your relationship with your pump. I really admire you for your devotion to Jonah to be willing to put up with the pump. You're doing a great job! He is such a handsome little guy. Still praying for you guys everyday!

Michelle in Va said...

He is getting so big. It looks like he has been eating good!! Yeah Jonah. Keeping you all in prayer. Get that rest while you can. Keep up the wonderful work. He looks so happy. God is so good!!!!

Bubeaner said...

I couldn't stop laughing about your milk labeling issue! I understand completely on the lack of sleep. The first few weeks John was in the NICU I was getting no sleep; I was always at the hospital during the day and pumping every 2.5-3 hours during the night. I can laugh about it now...but it was hard then.

John does not have EB so I can't even come close to understanding how much more stressful your situation must be. Know that we are praying for you.

Bubeaner said...

Oh, as to the touching thing.... ask your NICU if they have these little signs you can attach to your stroller. It says "Wash your hands before touching mine" in a big stop sign design.

It stops most people. For others, there really isn't anything other than being rude. =P

Astrid said...

You've been on my mind all day today since reading today's post this morning. I think you are doing such a great job and Jonah is so lucky to have you as a mom. He is so cute. I pray for you every day.

Amanda said...

Aw, Patrice! He's growing so beautifully! I agree with Kristen--love those cheeks!!

Buffy said...

First of all, he's so adorable! Secondly, that is a total crackup about the elastic in work. Sounds all too familiar! Praying you get some good, uninterrupted rest sometime soon. Isn't it amazing how "I got three straight hours of sleep last night" can go from a complaint to a praise.

Blessings,
Buffy

Laura A said...

More sweet pictures! Hope he enjoyed his first non-hospital outing today, and that people left him alone!

Do you have a label maker? Maybe you could pre-print Jonah's name and slap the labels on the bags, then all you'd have to do is date them and put the amount. Just a thought - Target(!) has some neat label makers!

Continuing to pray!
Love,
Laura in TX

twinsplusone said...

you have a beautiful baby boy!!! oh-- God picked the perfect parents for Jonah. We are NICU grads ourself--- life does get better- God is faithful! praying for you all.

Amy said...

Oh, Oh, I may be able to help with the aquaphor stain issue! Try Murphy's Oil Soap. It is usually used to clean wood, but it works wonders on oil stains. You just have to get the stain wet, and then apply the soap directly to the stain. Make sure that it doesn't touch dry cloth, or the Murphy's will leave a mark too. It has saved many a tablecloth and munchkin-sized outfit in my house.

Also, I just wanted to tell you what my daughter said to me yesterday when we were looking at pics of Jonah on your blog (our daily Jonah update session ;))

She pointed to a pic of him and said "Jonah came right from Heaven huh Mom." "He looks like Jesus' baby in our picture. I bet they are friends, huh?" This is the picture she was referring to:http://www.geocities.com/skrunchswife/ChristCuddlingBaby.jpg
I thought it was sweet. Even children can see how special Jonah is. Just imagine the good he'll do as he grows!

Please let me know if you have any questions with the Murphy's. My email is mylj831@msn.com. Also if you want an invite to our family blog (it only seems fair that we share our family seeing as you are so amazing to share yours.)

Caitlin said...

I'm going to be on campus in May except for may 6-11 for summer classes. I would love to be able provide/bring a meal to you (at the hospital?) if that's ok with you and if it works out schedule-wise. If you're interested, please e-mail me at kegerrc@email.unc.edu

Sandy said...

So blessed to hear that Jonah is doing well. I will continue praying . . . specifically that he will eat consistently each time and about the stridor and for mommy and daddy (of course). Love the pictures, especially the one of the three of you! What a handsome family!

Melissa said...

Too cute! I like the idea of the trip in May. We were lucky enough with Bry that one of the country's top craniofacial reconstructive surgeons happened to move here to Baptist Hsptl right before he was born, but I know many people who've taken their kids cross-country just to have them seen by doctors who specialize in the things their kiddos have. It's good to get a consultation in with someone who has been trained in the specifics and has experience...if nothing else, for your peace of mind. Jonah (and you guys) stay in my prayers...

alexis said...

Just curious, would you risk having another baby and passing on EB again? Is the risk high to have another EB baby? Were you both genetic tested for EB? It must be scary for you! God bless. He is beautiful!

Janet Caraker said...

Patrice & Matt,

Jonah is really starting to fill out! He looks better every time you show us new pictures. You can tell he is really taking in his new surroundings and the love of his family. Hope your trip to Lowe's was good (I love the hardware stores!) as you both needed a NON-medical outing! Our prayers are with you always.

Love, Janet Caraker

firstfruitsfarmne said...

Patrice,

I've been following for several weeks now and am just in awe of your mothering! I know it must not seem like it now, but I think God has given you a wonderful gift in having to be utterly and constantly in need of Him. How much more like Him you will grow to be!

Your precious little boy has been in my thoughts and prayers so much since I first read this blog.

I've been thinking about his situation so much. I realize you must be bombarded and overloaded with information and advice right now. If you don't have the brainspace for this now, you could just shelve it and maybe pull it out later if you'd like!

I've been wondering if extra-virgin coconut oil might be beneficial for his skin and internally as well. I've seen and experienced first hand it's healing properties. You might want to look into The Coconut Oil Miracle by Bruce Fife. You might not have to rely on the aquaphor so much. My mother has had severe reflux her entire life and has been completely healed for five months since taking two tbs a day. It is a wonderfully healthy fat that might help him keep up his weight gain, boost his immune system, and possibly help protect him internally. It would be super easy to put a bit in his bottles, and I'm no medical professional, but I don't think there could possibly be any risks.

Sorry for the length! Like I said, I know you are overwhelmed, this has just been on my heart. I will be daily covering your sweet family in prayer!

In Christ,
Kim

Laura said...

He is just precious!

Just so you know, my kids are 5 and 1.5, and I rarely manage full makeup. Concealer and lipstick can do alot!

Kim M said...

He is such a handsome little man! I love the picture of him wrapped up in the blue blanket and you can see his full face. Adorable! We'll continue to pray for Jonah and for you - rest is better than makeup any day!

connie said...

You look beautiful, make-up or no make-up.

Hey, I've done the milk labeling thing (and the sleep-deprived mislabeling). My daughter figured out how to help me with that ... she took some Avery labels and used the computer to make custom labels for the storage bags/bottles ... she filled in all the things that didn't change, like name, medical record number (I don't know about your hospital, but ours has the same med rec number for every stay ... might want to check that, if you will keep using the one he had in NICU) and left space for me to write in the rest when I used them. You can pre-write the dates before you go to sleep, and just fill in the times after pumping.

I have TONS of extra ideas to help with this part of your life, if you want to email me sometime at our_mallorie_rose (at) yahoo.com

Learned a lot from a yahoo pumping group, and can summarize for you, as I know you don't have time to be keeping up with group emails.

connie said...

Oh, and was thinking that making sticker labels to put on the bags/bottles is something that someone in your supportive group of friends might enjoy doing for you??

The Redfields said...

Patrice -- You might want to think about prelabeling the milk bags/bottles..... Either with a Sharpie or with printed labels. You could have his name ready and even the date, then just peel it off and maybe add the time.