good appointment

Jonah's doctor's appointment went well today. The doctor decided not to do the blood draw yet (the geneticist appointment is not until September), so that was good. He got three shots in his upper thighs, but besides crying a little when they went in, he quickly recovered.

His height, weight, and head size are all about in the 25th percentile. She's happy about his growth. Developmentally (smiling, laughing, cooing), she said he is a little behind, but that is typical for hospital babies... especially one with as much going on as he has. He'll smile every once in a while, but it is definitely not a regular occurrence (except in his dreams.) He's certainly very aware of people and voices and will track objects, but as far as expression, he's a little behind. She didn't seem too concerned, and says that should pick up in the next couple weeks.

I know his startle stuff is not from his Morphine. He only gets it once a night (an hour and a half before dressing change), and because of his weight now, it's not a mega-dose or anything. Plus, when all of this was going on, the Morphine had long been out of his system. As far as the anonymous commenter who said for me to get him off of Morphine NOW and acted like I was an idiot for not making the connection... We are slowly weaning him off over time (you can't take him off NOW), and when you have blisters all over your body and are getting nightly dressing changes at two months of age, then we'll talk about pain control... that is, if I knew who you were. I want to get him off as much as anyone. I am his mom after all. Once again, it's a hard choice knowing what's right for Jonah, and we're only trying to do the best we can. It's always a lose-lose with him, and if he stays on Morphine a little longer and weighs out of his dose and that controls his pain and gradually weans him (instead of making him go through withdrawal), that's what we'll do. As far as the vaccines, I'm not going to delay vaccinations for a child who is extremely susceptible to infection... infection that could easily kill him. I'll take my chances with shots. Again, we're just trying to do what's best.

Anyway, back to the startle, the doctor didn't seem concerned, and said it could just be an acid reflux or gas pain. He hasn't done it anymore since yesterday. Thanks to those of you who said it's normal. Reassuring. Encouraging. Thank you.

Matt and I are going out to dinner together tonight while our moms and his dad do drug administration, bath time, and supply set-up for us. That way, we can come in right at 8:00 and get started. Matt gets home around 5:30, so hopefully we'll get about a two hour date. I'm excited, and feel like we definitely need the time out, alone, and together. Although our relationship is strong, anything like this is stressful and takes a toll, and I'm happy to have the chance to hang out a little.

Thanks for praying for Jonah's doctor's appointment. We'll see how many blisters it all caused, but for now, it seems it all went as well as possible. And guess what? For being such a big boy at the doctor's office, he got a Cookout cheeseburger for lunch. Oh wait. That was me.

a special gift

So I got a special gift today. A massage! My friend Gina (who is staying with me today) had a masseuse come. (I just had to look up how to spell masseuse because this is SO out of my league... seriously, I've only had my nails done three times in my life.) She did my back and shoulders, and it was AWESOME! She said, "You really have a lot of stress and tension up here." Ya think? :) I could feel her moving knots around in my back - weird. Anyway, it was gloriously wonderful, and I'm thankful to her, to Gina, and to God for it. Amazing how it has lifted my spirits. I wanted to take pictures, but it was a little difficult seeing how I was getting a massage and all. Did I mention I got a massage?

Jonah has eaten really well in the last 24 hours (21.5 ounces to be exact!), so thank you so much for praying. Now if we could just work on consistency - rather than him eating like that today and then taking only 14 tomorrow.

He stayed awake all during his bandage change last night. He literally fought sleep the whole two hours, and then was wide awake and happy for a good 30 minutes afterwards before giving in. Little stinker. I think he stayed awake just to spite us. He did pretty well considering, but I definitely prefer a sedate baby rather than a thrashing baby when it comes to actually being able to wrap him well. I'm encouraged, though, that he can be awake and not screaming. I hope that's the case once he's not on morphine anymore. I'm eager for and terrified of that day all at the same time. Once we've moved everything downstairs, I'd like to get a TV and DVD player set up within his eyesight, so we can try some baby Einstein videos. Right now, we're sticking to some CD's (thanks to you guys) and Pandora. Pandora is right up there with Target on my list. We're hoping the basement will be finished within the next two weeks. WOO-HOO!

He cooed for the first time last night. No, not at me. But it was at daddy (the only acceptable alternative when it comes to firsts). I try to take video, but he seems to stop whatever cute thing it is the second I turn on the camera. Plus, any time I try to upload a video to blogger, I can leave it all day, and it still won't upload. The only way I've found to do it is to load it to youtube and then embed the video in my blog (which is EXTREMELY time consuming). I don't know what the deal is. I'm not very savvy.

Jonah has his two month check-up tomorrow. (Yes, he turned two months on Monday. No, I didn't take any pictures or blog about it. Yes, I regret it.) He will have to get shots and will have to have 5-10 cc's of blood drawn (that's a lot for a baby) for the genetic testing the geneticist has requested. I'm very sad about all of it, and if Matt had more PTO left, he would be going and not me. I will cry, I'm pretty sure. In addition to the normal anxiety of all that, I'll have to unwrap and wrap his upper thighs as well as his arms while we're there... part of that AFTER shots and blood draws without pain meds. Good times. Matt's mom will be going with me, so at least I won't be going through it alone.

He's been doing this crazy maniacal cry and startle today. He'll be lying on the changing table or in my arms perfectly content, and then, all of a sudden, without warning, he startles, gets this crazy scared look in his eyes, sticks his arms and legs straight out, and screams hysterically. I have to put my face right in his face and talk him down from it (which takes several minutes). It's really strange, and it's not caused (as far as I can tell) by external circumstances. I don't know what it is that's scaring him. It's hard to see that look in his eyes, though. He seems so scared.

As always, thanks for all your prayers and for praying for me when I have a hard time finding the words. I'm feeling much more uplifted and rejuvenated today. I miss my intimate relationship with the Father, and I want so badly to be on my way back. Today I've felt closer than I have in a long time, and I'm excited to have Him carry me back. Now I just have to stop kicking and screaming to get down and hang on for dear life. And with Him, it is a dear life.

Today's shout-outs:
- Gina - for sending Terre to give me a massage. Did I mention I got a massage?
- Nurse Brian from the pediatrician's office for taking Jonah's morphine prescription to the pharmacy (they wouldn't accept it from the doctor's office over the phone) because I couldn't leave to go get it from the office and take it myself. Above and beyond.
- Jason and Jennifer - for bringing us dinner tonight from El Maguey (the BEST Mexican restaurant in the whole world - trust me). I could buy their sweet tea by the gallon (si lo permitía, pero no (sigh)… así es la vida)

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.

prayer request

Please pray for Jonah. He is extremely congested and has dried up boogers way in the back of his nose that I can't safely reach. He's really having to work hard to breathe and can't eat because of it. This is on top of the fact that he's stopped eating as well over the last couple days. I think he's supposed to be taking 17-18 ounces minimum in a 24 hour period, and the last two days, he's only eaten about 14 each day... and this was BEFORE all this crazy congestion stuff (JEB pretty much affects any of his mucous lined surfaces). I've tried a cool mist vaporizer, a hot steamy bathroom and saline drops. I can't suction him because it will cause blisters. I don't know what else to do.

When I try to pray about it, it goes a little something like this, "God you can just snap your fingers and take his congestion away so he can eat. Throw him a freakin' bone for once."

See? So I need help.

I'm feeling very angry and negative these last couple days. Mad for Jonah. Mad for us. Mad that I can't go out to lunch with my friends, mad that I'm probably going to have to give up my job, mad that we can't go to a night movie or out to dinner. But mostly, I'm mad for Jonah - that he'll have to be in pain and struggle his whole life. That people may look at him and think he's gross or contagious or unclean. Mad that I can't make people be friends with him or make girls think he's attractive. So scared he might hate his life.

I know this is entirely negative and directly from Satan, but it's how I currently feel. I'm mad and on the verge of depressed some days.

And now he can't eat. Enough already. That's enough.

a day of firsts

Gabe's day (Wednesday) held many firsts for Jonah. Here they are in pictures.

Jonah's first time wearing pants. His diaper is so big and his legs are completely bandaged, so pants don't seem to be a problem... except that it's hot here now, so they're a little too warm.

Jeannie (Kathryn's mom) made Jonah some satin-lined shirts with no sleeves (I was worried about seams under his arm pits) that he can wear. It's a little redneck, muscle-tee for my taste, but you do what you gotta do. He needs some color in his life.

That's right, people... Jonah's first trip to Target! SO. MUCH. FUN. He slept through the entire thing, but I'm sure we'll make many more trips.

Jonah's first Target purchase. A plug-in bottle warmer for the car. This and my hands-free pumping bustier (Thanks, Elaine) may be the greatest inventions EVAH. I may even love them more than my nav system I got for Christmas, and I LOVE my nav system, so that's saying a lot.

This cashier looked at me really funny as I documented our time in line. I don't know what's so strange about taking 10 pictures of your baby making his first Target purchase. Monumental.

Jonah's first in-the-car bottle.

Jonah's first in-the-back-of-the-car diaper change. Please excuse all our crap.

And finally, Jonah's first bath.

Wait, what did you say?

Wait. Wait. You're going to do what?

WHAT?

Seriously though, Jonah DIGS the bath. He cries when you take him OUT. We tried last night with his leg bandages off, but he had new blisters on his feet when we did dressing change tonight. I think we could still do it if we wrap his feet and legs separately, and leave his feet wrapped. It's all trial and error. So I can get his torso, head, and face really clean, but still have to do a sponge bath for his limbs.

So fresh and so clean clean.

fundraiser for jonah

So, you wanna be a part of something really cool (if I do say so myself... and I do)?

To help raise funds for Jonah's care AND to support EB research, a few of our family members have come up with a great idea. Buy clicking on the BUY NOW button on my right-hand side bar, you can buy one of these awesome magnets (that my brother designed, thankyouverymuch) for your car or fridge or forehead... whatever.

Don't you just love it??? (But please, people, don't describe it as Carolina blue or Matt might not purchase one... We'll just say it's Jonah blue.)

They cost $10, and 10% of the net proceeds will go to DebRA (Dystrophic Epidermolysis Bullosa Research Association of America. DEBRA is the only national non-profit organization dedicated to both promoting research to find new treatments and a cure for Epidermolysis Bullosa (EB) and providing information and support for people with EB and their families. Check out debra.org to find out more.) The rest of the proceeds will go directly to help with Jonah's care, medical bills, and bandaging supplies.

Anyway, if you'd like a rockin' cool magnet and you'd LOVE to help Jonah, just click BUY NOW, and you can purchase one (or more) securely through PayPal.

** Please allow a couple weeks for delivery **

Oh yeah, if you don't want a magnet, but would still like to donate, you can do that by clicking on the DONATE button on my sidebar. All of that money will go directly to Jonah's care.

We're working on a separate page off this blog (if you want to share a link) with all of the above information (and some cute pictures, to boot), but wanted to go ahead and put up a post about it so you can get 'em hot off the presses!

We've also created a flier you can post to let other people know about Jonah and this fundraiser. If you'd be interested in getting the flier to post, please email Matt's Aunt Katherine at stainsofgrass at yahoo dot com, and she'll be glad to send you the pdf file.

As always, more than anything, we covet your prayers, and don't expect a thing. Thank you for your love, support, and continued petition to God the Father on our behalf.

gabe's day

Yesterday ended up being a beautiful day - weather wise and Gabe wise. It was a tearful day for me, but definitely more sweet than bitter. We lugged Jonah around town for about four hours. It was a day of many firsts for him, and I have LOTS (116 to be exact) of great pictures of the day, but I can't fit all of it into one post. So, for now, I'll just post some Gabe related pictures.

We bought three blue balloons and each wrote (I may or may not have helped Jonah with his) a little message to send up to Gabe.

We then drove out to Gardens of Memory, the cemetery (I hate that word) where Gabe is buried. Here are the pictures I took while I was driving. They were just hold up and snap pictures. Don't worry, I didn't use the view finder.

See? I told you it was a beautiful day. After arriving and a quick back-of-the-car diaper change (one of the firsts), we let our balloons go. It may appear as if these balloons flew directly into the trees, but I can assure you that most certainly did not happen. Er... (We also have a balloons flying out of the car accidentally, getting stuck in a really tall tree, Matt having to climb down a steep incline into the woods, putting all his weight on a tree, bending it completely backwards, me putting a screaming Jonah into his car seat in the bright sunshine without wind protection to cut the entangled balloons out of the tree, all to let them go - right back into the trees again - story, but I won't go there.)

At least one of the balloons made it. See? We didn't see the remaining two in the trees, so we're pretending those made it too. It was a funny moment, and I was glad that God blessed us with some ridiculous, this-can't-really-be-happening sort of humor to lighten the day. Humor is kind of our way of dealing with things, so it seemed fitting.

Then we spent some time taking some pictures with Jonah at Gabe's spot. I don't know where the pot of yellow flowers and birthday hat came from. They were there when we arrived. Matt, Jonah, and I added the sunflowers.

Jonah - really excited to be at Gabe's spot in the wind. This was just a short-lived moment of weakness. He recovered quickly.

Daddy and a recovered Jonah at Gabe's spot.

After we left there, we went to Lowes, and I picked out a bird feeder for Gabe's garden. I also got two cool decorative garden stakes. One says "Live" and the other is a butterfly. We're going to put all that out this weekend, and then I'll take some pictures. The flowers are beautiful right now, and BOTH of Gabe's dogwoods survived the winter and are looking great.

And then, after dressing change last night, we had some of Gabe's birthday cake. I want to do balloons and a cake every year, and when Jonah is a little older, I'd like to have a picnic out at Gabe's spot. This year we couldn't do it because of how windy it was. It just wasn't practical with Jonah. I also like the idea of adding something to his garden every year. If I keep adding plants and trees though, we'll never be able to move. I wonder how easy it would be to transplant a whole garden???

Anyway, we enjoyed the day very much, and Jonah did great. It's as if he knew it was a special day. We had a great time as a family (I love that word), and it was a great birthday. I look forward to celebrating every year, especially as Jonah gets old enough to understand what it's all about.

Thank you for praying for us. We felt God's peace and a sense of joy as we spent the day celebrating the life of both our sons. And the great news is - GABE LIVES - Praise God!!!

gabe

My dear, sweet Gabe,

Today is your one year birthday. I honestly can’t believe it’s been a whole year since I finally saw your beautiful face and held you in my arms. I still remember how warm and cuddly you felt, and I miss holding you every minute of every day. We were so excited about having you, our first child. Your name means “devoted to God,” and you are, aren’t you buddy? I wouldn’t call you back here if I could, even though I want to so badly. But I bet you are having such a great time. I can’t wait to see you in Heaven, and I hope you’ll do me the favor of meeting me at the gates. I’ll have waited long enough.


I figure you know everything that’s going on down here, and I want to thank you so much for talking to God and Jesus and asking them to help and heal Jonah. I know you have a hand in all of this, and I honestly don’t think people would be so touched by his story if they didn’t know your story first. It’s actually just one, big story, and it started with you. I know God is doing a big work through both of my boys, and I’m so proud of you for being such a big part of His plan. I don’t know why He chose you, but I’m so honored that He did.


A lot has happened this year. Mommy and Daddy have had a pretty rough go of it, but have also been blessed beyond measure. We’ve grieved you every day, endured the longest eight months of our lives being pregnant with Jonah, and had to quickly come to terms with a different “normal” than what we were expecting with his EB. We know that’s probably what you had to, and we are glad that you never had to feel any pain – that you went straight from mommy’s belly to the arms of Jesus. I imagine every day what you might be doing there – how great it must be – and aching for the day when I can join you. Thank you for showing up at the beach this summer and for the message you sent me through Nana on Mother's Day. I can feel you here with us, and I’m so glad to know you’re still around. I hope we make you proud.


I told Jonah today that he was going to wish for many things in his life – that he was going to want many things to be different – that he was going to think a lot of things were very unfair. But one thing I told him was that daddy and I would always make sure that he never wishes he had a different set of parents. He’ll never think he’s not loved or cared for or adored. I hope you know that we would have loved you (DO LOVE YOU) the very same way. And although I know you are with the best parent ever, I hope we would have come in a close second. I hope you know how much we love you and care about you. We will never, never, never forget you. As long as we have breath to breathe, we will tell your story. You will be the chapter where life started to have real meaning – where we stopped being so selfish and started living for something bigger. You will be the chapter that taught us unconditional love, hope in the midst of terrible sadness, peace that passes all understanding, and living for heaven, in a way we never had before. You may be my most favorite chapter.

I hope you are having fun playing with Kindred, Emory, Audrey Caroline, Luke and so many other babies that have been taken up to Heaven too early. I truly believe each one of you holds a special place in God’s heart , and I smile when I think about you having so many beautiful and PERFECT playmates. Satan never touched any of you. You never had to feel anger or guilt or greed or lust or temptation – any of the things that make this fallen world such a nasty place. You never messed up. You were perfect, unblemished, white as snow. How many of us can say that? And now Jesus tucks you in at night. What a lucky boy you are.

We never got to hear you cry or see you smile. We never got to take you to Church or on a walk or to a Wake game... never got to see the man you’d become. There were so many plans we had for you. But God’s plan was different, and that’s okay. I’ll never understand it. I’ll never like it. But I accept it. People say they’ll take all these questions to Heaven to ask God. But I won’t. I think when I get to Heaven, I won’t have to ask. I’ll just know and understand, and it won’t matter anymore anyway, because we’ll have ETERNITY to hang out. And that’s all I’ll need.

Today, Daddy, Jonah, and I will celebrate your birthday. We’ll celebrate the 37 weeks we had with you, the day the angels carried you to Heaven, the day we finally got to hold you, the day that was the saddest and happiest days of our lives. We’ll go out to your spot, send you some balloons, feed the ducks, work in your garden, tell Jonah all about you. I hope you’ll see us celebrating you, and that it will be just one more thing to add to your happiness. Jonah will always know he has a big brother. He’ll always know your picture. We’ll tell him all about you. I’ll sing him the songs I sang to you.

Thank you for looking down on us. Thank you for asking God to watch over us. Thank you for being our son. I consider myself the most blessed mommy ever. I’ll never forget you, buddy.

Happy First Birthday, sweet baby Gabe. We miss you more than we could ever say. I ache for the day you’ll be in my arms again. And if Jesus comes before I make it home, I hope to see you riding with Him when He returns. I’ll be looking for you. Either way, I’ll see you soon. I can’t wait.

Love,
Mommy

Gabriel Matthew Williams

April 22, 2008

3:11 am

6 lbs 14 oz

20.5 inches

a post not (entirely) about jonah

Katherine "tagged" me to do these quizzes. God bless her. This obligatory daily blogging is killing me, trying to come up with something exciting enough to post EVERY day. I don't know how the blogging pros do it. Thanks for giving me something (anything), Katherine.

8 Things I Am Looking Forward To

1. Going back to church: I sure do miss rockin’ out for Jesus at Pinedale and the awesome fellowship (IN PERSON) of our brothers and sisters in Christ. Can’t wait ‘til Jonah is well enough and on some semblance of a schedule, so we can head back.

2. Jonah sleeping through the night: Although he would maybe do this on his own, I’m WAY too paranoid about him needing to eat more and his high caloric needs to LET him sleep through the night… so maybe this one should read 2. Not being so neurotic.

3. The basement being finished: So excited about doing Jonah’s dressing changes somewhere other than the dining room table… partly for back pain reasons, partly because I’d like to PRETEND we actually eat at our dining room table and need it for other reasons. In reality, we eat on the couch in front of the TV, but don’t tell anybody.

4. The end of this survey: When you’re all of a sudden a stay-at-home mom whose life seems to be taking care of an eating, sleeping, pooping machine who can’t go out much, it’s hard to make any out-of-the-house sort of plans to look forward to. :) I’m boring.

5. Kim, Andrew, and the kids coming: They arrive next Thursday (the 30th) and will be here all weekend. I can’t wait!

6. Taking Jonah to Target: he’s going to love him some Target… or else.

7. Watching a movie: Really, any movie will do. Really. I just want to watch a movie. We’ve had a Netflix movie since before Jonah was born. Oh, the times they are a changin’.

8. Jonah’s first (second, third, fourth, fortieth) birthday, Jonah starting kindergarten, getting baptized, playing sports, going to prom, graduating college, getting married, having kids – pretty much every beautiful milestone we’ll get to witness in his miraculous life.

8 Things I Did Yesterday (Monday)

1. Prayed for poop.

2. Got lots and lots of poop. Seriously, can you guys stop praying for poop now?

3. Contemplated taking a picture of aforementioned poop for my blog. Reconsidered.

4. Sat on my back deck in the beautiful sunshine with my brother and my baby and talked on the phone with my sister-in-law who I hadn’t talked to in a week. Inexcusable.

5. Ordered a small changing table for my bedroom from target.com. (Target.com - the next best thing to the real, live Target)

6. Took this funny picture of my dog.(This is after Jonah finally asleep for the night. Deac LOVES it when Jonah is asleep. If he’s crying too loud, Deac goes to the backdoor and growls until we let him out. He’s pretty pooped by the time the day’s over. Look at him - Poor dog. It’s as if he’s on Morphine and Ativan too.)

7. Watched HGTV – saw lots of cool designs in lots of cool houses that I’ll either a) never be able to afford b) never be creative enough to pull off or c) never have enough energy to plan and carry out. HGTV is the devil.

8. Prayed for Jonah. (This was on Katherine’s, but you can never have too much praying for Jonah. – I mean, in my humble opinion, that is).

8 Things I Wish I Could Do

1. Renovate my bathroom: Knock out the back wall of my house, expand it out onto part of my deck, build a big ol’ honkin’ closet, and make the current closet part of our bathroom. I want a big tub with jets and bubbles. But I want it to be a tub that never gets scummy or requires cleaning. A girl can dream, right? HGTV is the devil.

2. Get more sleep: This one I left from Katherine’s. But I second that emotion.

3. Become a runner: That’s not really true. I just want to say I’m a runner so people would be all impressed with me like I am with people who say they are runners. Really, I just want a runner’s body without all the work and sweating.

4. Go to all of the Spanish speaking countries: I’ve been to Mexico, Argentina, and Nicaragua. Only 18 more to go.

5. Go on another (many more) mission trips: I did a VBS for a week in Nicaragua in the summer of 2000, and I haven’t been able to go on any more. Someday.

6. Play the guitar: That’s it, really. I just wanna play the guitar.

7. Speak Italian and French: Learning languages is addictive. They say once you’ve learned one, it’s easy to learn others. I don’t really know who they are, but they say it, so it must be true.

8. Find a cure for EB: or find someone who could find someone who could find a cure for EB. Still praying for that miracle.

8 Shows I (used to) Watch
Grey’s Anatomy
Private Practice
American Idol
Lost
The Office
Chuck
The Today Show
Sportscenter (but against my will and better judgment)

big blue eyes

Guess who slept through his dressing change until 2:30am (when we woke him up to eat) and then from 3:30am-7:00am (when we woke him up to eat) and then again from 8:15am-10:00am?

He did. Guess who's feeling like a brand new person?

ME!!!

we have poopage

Excuse me for not taking a picture...

He went from whiny, fussy, uncomfortable, red-faced, struggling to...

...almost instantaneously.

Hooray for relief!

jonah's article

Click here to read Jonah's latest article.

(I don't know WHY in the world they posted that last picture of me in the slide show. Yikes.)

pray for poop

Jonah's head is looking much better. Thanks for praying! Keep 'em coming.

Our only problem tonight is sweet boy is very, very constipated. He hasn't pooped since 6:00pm LAST NIGHT. And he's on breast milk (fortified with Similac soy powder). When we were in the hospital, he pooped with almost every feeding. He's on Poly-visol (a multi-vitamin) with iron (EB babies tend to be anemic, so we're being proactive).

Anyway, pray for poop! I'm going to call the pediatrician first thing in the morning. I've looked at some online tips, but don't really feel comfortable doing much of anything til I've cleared it with the doctor. I'll call tomorrow whether or not he poops tonight, but it sure would be great if he would! I know his tummy is KILLING him.

He's still not asleep and hasn't slept in a good while. He's not crying. He just is. Please pray for some poop, and a good ol' night's sleep. He can't be feeling great.

Have you guys ever prayed for poop before?

Also, I didn't mind the SIDS comment at all. It was posed very nicely, and I knew posting the pics it would probably come up. Believe me, it's something I've thought about a lot. It's mainly a warmth thing. He can't wear clothes and doesn't like to be swaddled, so I really don't know what else to do. I don't do stomach for obvious reasons. I don't do back because of acid reflux/spit up reasons. So I lay him on his side and put a blanket up under his arms (arms on the outside), so that if he lifts his arms, he won't lift the blanket up over his face. The BEST thing is the Angel Care monitor we got from Babies R Us which will go off if he hasn't moved (including breathing movements) for 20 seconds. It's the only reason I can sleep at night. Really. I recommend everybody go out and get one. Talk about peace of mind.

Anyway, I said this would be short, so I'll shut-up now. Goodnight.

off to bed

Jonah's dressing change went really well tonight. Thank you for continuing to pray.

Please be in prayer for the back of Jonah's head (hey, you said you like specifics) - that his blisters there will heal quickly and that it will become more durable. It makes it so hard to pick him up, it's hard to bandage and protect from infection, and it hurts him because as much as we'd like to avoid handling him there, it's just impossible.

And now...

We're off to bed.

Sweet dreams.

an ode to granny

There once was a lady named Granny.
Her knack for caring uncanny.
She fed me and snuggled.
She never got muddled,

and always cleaned my fanny.

Granny came and stayed for three weeks.

She accomplished many feats.

The house was a wreck.

She saved mommy's neck.

And when he was scared, she snuggled Deac.

Today she had to go home.

I'm very sad that she's gone.

I hope she comes soon,

and sings me a tune.

I'll ask grandaddy to put her on loan.

Granny helps me in all of her ways.

I love the time that she stays.

But have no fear!

Granny is here

e-ver-y Thursday and Friday.

Thanks for all your help, Granny.

We love you.

Love,

Jonah (and mommy and daddy)

after a hair wash

Jonah tonight after his bath and dressing change... looking a little pooped.
(The new face blisters I was talking about are on his forehead - under the towel).

Look at those little cheeks plumping up - current weight: 9 lbs 10 oz

Eat, Jonah, Eat!! Grow, Jonah, Grow!!!

Thank you, Father.

another day another post

***UPDATE***
The Zout/Oxiclean combo was a no-go. But no worries. At least I ran everything through the dryer again and set those stains EVEN deeper. Grrrr...
*****************************************************************

I'm happy it's Friday. Not that my weekend days are really different from my weekday days, but Matt's around more, and that makes me happy. He has used sooo much vacation time that after next Wednesday (when he takes off for Gabe's one year birthday) and our beach trip we had already planned for this summer (assuming we'll still get to go), he'll only have 2.5 days of vacation left... which is actually great when you think about what he's already had to take off. His work has a very generous PTO policy. He'll just have to stay healthy.

I put on make-up on today, brushed my teeth, and blew-dried blow-dried dried my hair with a hair dryer -thankyouverymuch.

Not a whole lot to report today. It's 72 degrees and sunny, and Jonah and I spent some time out on the back deck. I'm sure we'll be out there again. It gives me the semblance of getting out of the house. It was all going great until he projectile spit up all over me, the chair and the deck. Sweet boy missed his bandages though, so I was very thankful for that.

Think we may have gotten some real smiles today... still too hard to tell.

I'm currently washing my Aquaphor stained clothes. I'm trying a concoction of Oxiclean powder wetted with Zout spray and rubbed in. I'm washing them in warm water (YIKES). We'll see how it goes. If it takes the color out, it's not really a big deal since I'm not wearing them out of the house as it is anyway. Thanks for being considerate of Jonah's clothes, but HE doesn't wear clothes. It's OUR clothes that have grease stains all over them. Matt and I are developing Aquaphor and Non-Aquaphor sides of the closet. If this doesn't work, I'm eager (I mean not exactly eager, but you know what I'm saying) to try the other options you guys recommended.

Oh yeah, I forgot to mention when I was writing about the crazy, incoherent breast milk labels - I also tried to pour the milk from the bottle to the storage bag, totally missed, spilled milk all over myself and the bed, and had to do a middle-of-the-night sheet change. Just what I want to be doing at 3am. Good grief.

They say the newspaper story is on track to run on Monday. I'll let you know if it changes.

Jonah's still eating well, and we were able to skip the midnight feeding last night. It was a good move except I accidentally turned off the alarm clock at 3am. So at 3:30 when he woke up, it was NOT pretty. Homeboy woke up with a vengeance. And as much as I wish I could heat up milk in 10 seconds, it didn't happen. VERY ugly.

We'll be celebrating Gabe's one year birthday on Wednesday. I'd like to do some special things, but am having a hard time coming up with exactly the right thing. It's hard for anything to feel right when he's not here to celebrate with us. I think we'll probably take Jonah and have a picnic out at his spot if it's nice weather. Other than that, I'm not sure... it's such a bittersweet day - mourning the incredible loss, celebrating the day we finally got to see his beautiful face. I miss him every minute of every day - even more now that Jonah is at home, and we're getting to do so many baby things with him. I wish he was here with us but am thankful he rests in the arms of my Savior. I can't believe it's almost been a year.

Please be in prayer for us as we approach the day. I'm not sure yet how we will handle it, but I've teared up several times the last few days just thinking about it. Our hearts are still very much broken.

Also, please be in prayer for Jonah. He's got some new blisters on his face, the back of his head, his shoulder, and his belly. The ones on his belly and shoulder keep refilling and stretching out. He's going to have huge raw spots by the time they're done growing for good. The ones on the back of his head hurt him a lot and make it very hard to pick him up. And the ones on his face just make me sad. His face has looked so great for so long... my hope for him has been that his face would stay clear - superficial though it may sound. It would just make his life easier. I need to not care what people will think and say, but I just know how cruel the world can be. I want them to see what I see. I want them to see Jonah.

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...

home again, home again

A couple more pictures from our time at the hospital.

The following picture pretty much speaks to how tired we are these days. The rigor of new parenthood coupled with giving meds, pumping, mixing milk, dressing changes, time in the hospital and just worrying in general lead to UTTER EXHAUSTION. We sleep when and how we can.

We're home now. Our friends Rob and Leigh are visiting from Greenville, and it was so nice to have a happy day to come home to. I slept for about 2 1/2 hours this afternoon. Napping is glorious - I just wish I got to do more of it. The running joke is that if we need Jonah to wake up to eat, I just go lie down in bed and pretend I'm trying to sleep - that wakes him right up.

Things I'm thankful for tonight -

- Jesus and the gift of salvation and ultimate hope

- Answered prayers

- JONAH

- Jonah's healthy airway
- Beautiful friends and family - a huge support network

- Blog readers (aka PRAYER WARRIORS)

- HGTV (which has good shows all night except between 4-6am, when it's lacking which is unfortunate considering this directly coincides with Jonah's play time. Sabrina, I blame you for this. I don't feel like reading Bible stories in the middle of the night like some night nurses I know)
- Still Target

jonah - tuesday, april 14th

Jonah's scope went great, and his airway looks clear. The only thing the ENT saw was some very slight inflammation in his vocal cords, and he says that is very common - that the slightest irritation could cause that.

He's breathing great, and there were no signs of blistering or ulcerations. He's moving air well, and his airway looks very open and clear. He said that you would really notice a problem when Jonah is ticked off - as far as not moving air well, constriction etc - and believe me, folks, he was pretty TICKED OFF. But he held still for the most part, it was quick, and I don't think it was any more intrusive than the NG tube Jonah had in and out and in and out when he was in the NICU.

So... as hesitant as I am to say it... for now, things look great and stable and as normal as possible. Jonah took 120 cc at his 3am feeding and 85 cc before we went down for his scope. That's up A LOT from what he's been eating.

We're relieved and encouraged. Praise God for protecting Jonah's airway. Another prayer answered. I'm continuing to pray that airway issues are NOT something Jonah has to deal with. He's got enough junk on his very little plate as it is. We'll still have to watch his breathing very carefully, but for now, things look good.

We'll be heading home as soon as possible, but at the speed things have been moving around here lately, that could be a while.

Thank you so much for praying and loving on us. Now if someone could just figure out my Aquaphor stain problems... you know now that we have the breathing issue resolved. :)

update and prayer request

Unless something drastic happens or we learn new information, Matt and I have decided to have them scope Jonah's upper airway tomorrow morning (just the upper airway scope done in the clinic, not the OR one that would require sedation).

We read the article, "Tracheolaryngeal Complications of Inherited Epidermolysis Bullosa" by Dr. Fine, and that pretty much made up our minds for us. It was a very scary article based on a lot of NOT encouraging findings, and I end the day on a low after having read the information. It does not give a good outlook for Junctional EB - either kind. Although not every child with JEB suffers from airway complications, a good number do, and Jonah is already showing the signs.

Here are some parts we highlighted:
- In a 1980 publication, a 3-week-old child with an autosomal recessive form of EB, clinically most consistent with JEB, presented with inspiratory stridor and retractions, necessitating tracheostomy.

- Approximately 55% and 47% of all patients with JEB-H (Herlitz) and JEB-nH (non-Herlitz) die by age 6 as based on EB Registry lifetable analyses published in 1999. (47% ??????)

- By excluding all other well-known causes of death in these patients, to include failure to thrive, sepsis, pneumonia, and renal failure, we can estimate that up to approximately 10% and 23% of all JEB-H and JEB-nH patients, respectively, die from some other undefinable cause, which would include airway occlusion.

- The magnitude of these cumulative risks for laryngeal stenosis or stricture becomes clinically even more concerning given the fact that sudden airway occlusion and death have been repeatedly described anecdotally in JEB infants and children.

- Because the earliest sign of laryngeal involvement is a weak or hoarse cry, we strongly recommend visualization of the upper airway in any child with EB who presents these findings.

- Elective tracheostomy is the most prudent approach to prevent the risk of sudden airway occlusion occurring later.

- Indeed, we have had two infants die when tracheostomy was deferred because of apparent clinical resolution or improvement of symptoms.

- ... there is a substantial risk of laryngeal stenosis or stricture in infants with JEB and that airway obstruction does contribute to the overall high risk of early childhood motality as well as morbidity.

- Because it is now possible to prevent the majority of JEB infants and children from dying of other causes, most notably septicemia (infection), we would argue that the possibility of preventing airway obstruction in these patients appears to outweigh any concerns over surgical risks from the performance of elective tracheostomy.

- Initially presenting as hoarseness of cry or voice, this may progress to inspiratory stridor and partial or complete airway occlusion. Given that sudden death by suffocation will occur if complete airway occlusion is not immediately reversed, performance of elective tracheostomy when early symptoms of airway compromise arise may prove to be a life-saving preventative intervention.

So anyway, please pray that it's only a cold with caused all of his symptoms or that it is a result of the acid reflux he's battled. I don't want to focus on the negative or believe the worst, but I am really, really scared.

Please pray for Jonah tomorrow as they scope him. Please pray that he will be strong and that his interior will be tough and can resist damage. Please pray for the results, that it is not serious and not something that will result in a tracheostomy. Please pray for us - that we will have peace and wisdom as we talk to the doctors and make decisions for Jonah. Please pray that this is not what it seems, and that all these symptoms are indicative of something much less serious. Please pray that God will send a legion of angels to watch over Jonah tomorrow as he gets the scope and well, that they'll just hang around and protect him for the rest of his long, long life. :)

Thank you for praying. I'll update as soon as I can.

i have my camera now

Jonah is eating like a champ, regaining his strong voice, having less mucus, and breathing easier. I'm pretty sure he is just spoiled rotten, wants attention from smart, important medical people, and knows there are pretty nurses at the hospital. The great manipulator. He's having a very awake, content day and is seeming more and more like the old Jonah - happy, bright eyed, NOT starving.

However, we can't ignore the stridor, hoarse cry, and other symptoms he's had, and we still don't know what we're going to do. It could be he just has a cold that's caused all his symptoms. It could be that the acid reflux has caused some of the breathing issues and the mucus and gagging. OR IT COULD BE AIRWAY PROBLEMS. It's hard to know. If we scope and don't need to, we could cause him damage and actually contribute to what we're trying to avoid. If we don't scope and need to, he could suffer respiratory distress down the road. It's a hard call. Please continue to pray for wisdom for us as we make this decision (you guys talk so much about my instincts, and I just feel like my only instinct is to put my head in the ground), and wisdom for the doctors as we decide the best coarse at this point. Scoping is scary (scope going down, possible IV, sedation etc)... Waiting and seeing is scary...

... but we are not given a spirit of fear...

back in the hospital

Jonah is in the hospital again. We decided last night to take him to the ER after he had an episode where he was gagging a lot and mucus was coming out his nose along with milk. That was kind of the final straw for us. He's breathing fine now, but they are going to keep us overnight, and the ENT will see him tomorrow. We'll probably push for scoping him, but I don't really know the "safe" EB way of doing things. There's an upper airway scope that they could do in the clinic, and there's a "rigid" scope that he would go to the OR for. I don't really know the difference and won't until tomorrow when we talk to the ENT. I don't know if they'll be able to talk to Dr. Elluru in Cincinnati or not before whatever procedure they decide on. It makes me nervous, but I don't really know what else to do.

I'd welcome any advice/knowledge on the whole scoping thing, especially since they may not be able to talk with the EB experts.

Anyway, I'll try to post an update once we know more, but just wanted everyone to know we're back in the hospital - this time in a private room on the pediatric floor.

Thanks for your continued prayers. Like I said before, it's all pretty overwhelming and lots of new really important things to learn... I definitely feel like I'm behind the curve. Please pray for wisdom for us as well as the doctors as they/we make decisions about where to go from here.

Oh yeah, the Easter Bunny came and brought Jonah a little basket with a duck and a rattle. It was really sweet, but Jonah slept through the whole thing, and I DIDN'T HAVE MY CAMERA!!! Dang it.

come sweet sunday

I'm feeling weary tonight - physically and emotionally. I suspect Matt is too, but don't want to speak on his behalf. All of this just feels like two steps forward, three steps back. Every time I feel like we may be in the clear - there's momentary respite - it seems to fall apart.

Four out of twenty-two comments tell me I can't trust doctors who don't know about EB. It's too much. I have no baseline for Jonah's care. I worry all the time. It's hard to sleep. On one side I get reassured that things look good, on the other, I get a ton of heavy, new things to worry about. It's exhausting.

I'm trying to arrange to see the ENT early next week for Jonah to get scoped. I've spoken with Geri at DebRA and am requesting that our ENT to talk to Cincinnati's ENT. Until then, we just pray and hope that things really are okay. I inwardly freak at every weird breath, funky sound, overly red blister, smelly discharge, half-finished bottle... it's too much. I want to trust that God is going to make it okay - that He's going to protect Jonah. I want to hope that God would not have allowed Jonah to survive thus far - to have touched so many lives - just to take him away. I want to think that it's just blisters, nail, hair, and teeth problems. I want what I'm not promised. I want a plan that's not mine.

I think I may take a break from blogging for a few days. I may wake up tomorrow and change my mind completely, but I just want to be sad and confused and frustrated - and I don't feel like I have any more words for now. I hope that you'll continue praying for our family. It's all I know to do. I have control over nothing else. I just pray when I can and trust that you guys are praying when I can't.

I hope you all have a peaceful and meaningful Easter. On a day when we celebrate His saving grace - His overwhelming love - His gift of hope - I pray He will show my sweet baby new mercies of a similar kind. I pray that our Sunday is coming.

Please pray for Jonah.

update

We took Jonah to the doctor this morning. She said that he's still moving air well, and that his lungs sound good. She thinks it's just some congestion, but wants us to keep an eye on it. If he begins to have a fever of over 100, she has instructed us to go to the ER.

While we were there, he breathed much better, wasn't quite as congested, and ate 60 cc's without a problem. It was like taking your car to the shop and it not making the noise. Hopefully he'll continue to improve. He does seem to be breathing a little bit better. They used saline drops and suctioned him out a little at the doctor's office, and we'll try to do the same thing as needed and before he eats.

He smiled at Matt this morning. I missed it, but Matt says it was definitely in response to him. Maybe I'll get a smile one of these days. I just feel like he feels pretty crappy right now. Poor thing hasn't had a whole lot to smile about.

Jonah's waking up to eat. Hooray! Gotta run...

all over the place

Jonah did really well tonight, and has for the last few nights. Hopefully we're getting into a routine that suits him. I still can't imagine how it will be when he's off the drugs, but we have plenty of time to pray about that. :) They are planning to do an auto-wean off the morphine and Ativan, just letting him outgrow his dose. But before we left the hospital, I asked at what weight we could discontinue the morphine (a weight where it would no longer be having an effect on him and we could quit cold-turkey), and they said 26 pounds!!! 26 pounds??? I'm going to talk to the pediatrician about weaning him off over time before that. I don't want him to be on morphine for a year. I thought we were talking a matter of weeks or months... not a whole year.

His last couple of feedings he's eaten a little better, so please pray for that to continue. It's hard for him to get healthy and have the energy he needs if he's not eating... which I guess is the case for any baby, but is especially hard for an EB baby since they need so many additional calories to stay hydrated and nourished. Thankfully, he doesn't have tons of blisters right now, so hopefully he's not losing a ton of fluids - or at least not as much as he could be if his blistering was worse.

He continues to be extremely stuffy and still has a very hoarse cry. It's the most pitiful thing.

Did I mention the mitten thing was a COMPLETE DISASTER??? His right hand was completely healed, so we just covered it in a mitten a couple nights ago... all with the hopes that he would be able to free his fingers and use his hands a little bit. The next day around midday, we checked on the hand (I could see drainage and blood coming through the mitten). His hand was completely red and swollen all over. His fingers were huge and had blisters across the knuckles and between almost all his fingers. His whole thumb was basically one big blister. I don't know how to let him move his fingers and work his hands some without him tearing himself up. Mittens are apparently NOT an option right now. It was so sad and disappointing.

I wonder if he'll have to be SO bandaged his whole life. His arms and legs look great, but if he's not protected, they'll blister. I can't even imagine when he starts crawling and walking. I'll be excited to hear everyone's ideas when the time comes. I'm sure you EB folks have come up with some creative stuff. You always do! I would like some suggestions for EB baby hands - is there any way to give him a little more freedom and range of motion without him causing so much damage?

On a side note, I LOVE Target. Random, I know, but seriously, I LOVE Target. I can never live in a place where there's not a Target within 10 minutes. Walmart will not suffice. It's go Target or go home. No substitutes. I think I could buy everything on their home decor aisle... and their baby aisle... and their scrapbooking aisle... and their furniture aisle... and their picture frame aisle... or not, whatever. (My love affair with Target may or may not have gained a certain desperate intensity after being cooped up for many a day - Can you guess where we did our Easter shopping today?)

Our friend Melissa has spoken with a pharmacy here in town and we are able to get a case of Aquaphor (12 tubs) for $140. That's 11 something a tub, which is much better than buying it from Walmart (the cheapest we've seen it on the shelf) for 14 something. We're also working on getting Eucerine to donate some. They have a program where they will donate a case for medical use every 3 months. That's in the works. I think a case will last us about a month, but it's really hard to know until we've been home for a while.

Matt's Aunt Katherine's friend Heather has graciously offered to design our birth announcement for Jonah. She's also giving us 150 FOR FREE and letting us have the digital image if we want to get more printed off. Check out her website if you are in the market for a super-cute announcement of any kind. SHE IS AWESOME! We're putting the final touches on it. I'm so excited. ADORABLE.

Here are some pictures from last weekend I never got posted.

(Sorry this post was all over the place)

Cute Ainsley

Ainsley's first picture with Cousin Jonah. Very intrigued with the diaper change (which also happens to occur on our dining room table - where else?).
Asher's first picture with Cousin Jonah.

Peyton, Asher, and Ainsley with Jonah. (Affectionately known by Ainsley - and now the rest of my family - as Jonut.)

Jonah and Daddy visit Gabe.

Aunt Amy rocks Jonah.

Uncle Peyton rocks Jonah.

Feeding the ducks and geese at Gabe's spot.

jonah - friday, april 10th

Jonah is not doing so well today. He's supposed to take 500-550 cc's in a 24 hour period, and he only ate 273 in the last 24 hours. He's really stuffy and lethargic. He's not laboring to breathe, but he's just congested sounding and really sleepy. He has a hard time taking a bottle because he can't breathe through his nose very well, and he'd rather sleep than eat. He doesn't have a fever. I'm not sure what's going on. Maybe just a cold. I don't know if that's a big deal with EB babies or not. The pediatrician's office is closed until tomorrow morning when they have their sick clinic hours. He's drooling a lot more than usual, which would seem to mean that it hurts to swallow, although that's just a guess.

Mom stayed last night to help with Jonah, so I definitely slept more last night than I have been, although I feel my eyes closing as I type this post. It's rainy and dreary here today, so I know that makes me sleepier. Matt's dad got here this morning, so he and Debbie watched Jonah while Matt and I went and grabbed some lunch at Fubbruckas and then went to Target for some Easter basket shopping. We then came straight home, because the Journal photographer came at 2:00. She's coming back at 8:00 tonight for Jonah's dressing change.

I'm feeling pretty down today, but only because Jonah's feeling down. I typically feel what he feels. I'm sad for him. I hate that he hurts.

all is well

All is well. The ENT listened to Jonah and says that he's moving air very well. He's not laboring to breathe at all, and he said he's not concerned at all. He says that he's assuming it's just the result of some blistering and inflammation and that with all he's probably got going on down there, it will probably come and go throughout his infancy at least.

He says he doesn't want to send a scope down or take him to the OR for a lower respiratory exam unless there's a reason. And right now, there's no reason. :) We'll see him again in two months just to make sure things are still okay.

He says that if things start to go south, it would not be something immediate, but something that would happen over the course of a few weeks. He described the sounds we would hear and said that they wouldn't come and go, but that it would be constant, would get progressively worse, and there would be no micro-analyzing - it would be VERY obvious.

Thanks for praying. I can't wait until I'm more familiar with EB and know better what's nothing and what's worth worrying about. For now, all is well. Praise God.

prayer request

Jonah woke up last night for his midnight feeding with a VERY hoarse cry. A hoarse cry is the one major symptom they had told us to look out for as an indicator of respiratory issues/laryngeal involvement. We were supposed to go to the ENT today at 4pm just for a check-up, but I called Dr. Ali (the WONDERFUL dermatologist at Baptist) this morning, and she's going to talk to the ENT and to Dr. Fine about what our course of action should be. I'm waiting on her call as I type.

Please be in prayer for Jonah, as this could be serious, and for us as we decide the best coarse of action. I debated taking him to the hospital last night, but didn't really want to go into the ER with a baby ER doctors know nothing about, EB they know nothing about, and didn't want to be in a place where there would be so many germs.

We'll end up AT the hospital today either way since we had the appt anyway, but I'm hoping to get in quicker and to see the right folks. Matt has called in to let them know he's not coming in to work until we have a better grasp as to the severity of what's going on.

Please pray for Jonah.

a night with jonah - worth praying for

I just thought you guys might like to know what it is you pray for every night at 8pm. Jonah had a good night last night, so we were able to go slow enough to take some pictures.

This is the current set-up on our dining room table. The house looks like it has thrown up a concoction of baby stuff mixed with a big ol' helping of medical supplies. Sometimes it feels like the walls are closing in, but it's all TOTALLY worth it for Jonah. Our church is finishing our basement room to include lots of storage for all his supplies, a changing table for dressing changes (one high enough that we're not breaking our backs like we are now), and a sink. What a beautiful gift! I can't wait til it's finished. Doing nightly dressing changes on our dining room table doesn't exactly make it conducive to eating dinner. :)

This is Jonah's left leg. It does not look this red in person. This is the knee that was so bad it made you want to cry. It's completely healed, although I think it will always be discolored. The tops of his feet still get blisters most days, so that's why it still looks a little raw. Healing is quick though, and there were no new blisters on his hands or feet tonight. Hooray!

First we unwrap the three layers of bandaging from the leg. Next, we do his exercises (below picture), especially focusing on the ankles since Jonah tends to always pull his feet up. We then wash the limb with soapy water and then rinse with regular water using a bulb syringe. We go through Chux pads (water proof blue sheets) like nobody's business. After washing, we then drain any new blisters (you want to drain blisters after the skin has been cleaned). There were no new blisters on his left leg or foot last night.

After draining his blisters, we then put double antibiotic ointment on any open or raw looking wounds, especially the blisters we've just drained. We then cover the limb in Aquaphor (tried covering the bandages and not his leg, but they seem to stay put better if we grease up his leg rather than the bandaging.) We then put cut up strips of Vaseline gauze (slathered on both sides in LOTS of extra Aquaphor to prevent drying out) between each toe, and then use two to three half pieces of Vaseline gauze to create a little boot on Jonah's foot.

We then wrap his leg using Mepilex Transfer. It usually takes three strips, the top strip having three slits cut in it to make it lay on his upper thigh better. (Whoever suggested that, I could KISS you - great idea!!! Has made our lives - and Jonah's thighs - so much better.) (Keila, sorry I'm using the burp cloth you gave us to cover Jonah's wee-wee. He has peed on me one too many times. I also use it as a burp cloth, just so you know... having washed it thoroughly in hot water, of course).

We then wrap the Transfer using Conco Conforming Gauze. It's much softer than the Kendall Conform we were using at the hospital.

Then, we put Tubifast on top (green stripe for legs, red stripe for arms) to hold it all in place. What I LOVE about Tubifast is that you can wash it and use it over and over again. It gets softer with each washing. Stringy little boogers though after a wash. We spend lots of time cutting the strings off. Thanks for the suggestion about washing and drying them in a lingerie bag. I was driving myself crazy having to pull 10 pieces of staticky Tubifast pieces off of Jonah's blankets.

Matt unwrapping Jonah's right leg... wait for it... wait for it...

Look at that BEAUTIFUL skin!!! Look what you've been praying for. Look what God has done! Praise the LORD!

Jonah had a new blister on the back of his right heel last night.

About to lance the new blister. You have to lance them or they will pull the edges of the skin, and the blister will just get bigger and bigger. And a lot of times they refill if you don't poke enough holes or don't make sure it's completely drained. Lancing is VERY hard to do if Jonah is not calm, especially if the blisters are in a dangerous spot. (I had to lance one yesterday that was on his eye lid... talk about scary. I waited until he was really, really, really asleep. He didn't even flinch).

Jonah's left arm. Isn't it beautiful? Look at those perfect fingers. I just want to kiss them all over. Do you remember how I described his hands before - that the looked as if he had put them in a fire and left them there? They were completely raw - the whole top layer of skin completely gone - and deep red and purple. But look!!! I can't even tell you how amazing it has been watching God heal him - right before our very eyes. Jonah is so close to just wearing a mitten on this hand, but the other side is a little raw from a couple blisters he had. Just waiting for those to heal, and hopefully we'll be at mitten stage.

Jonah's right arm. The process for the arm is basically the same as for the leg - unbandage, exercises (focusing on his wrists, pinkies, but most importantly his thumbs with he keeps pulled in all the time), wash, rinse, dry, Vaseline gauze in between fingers, around thumb, hand, and wrist, Transfer around the arm, Conco Conforming, Tubifast. He HATES having his hands bandaged. It is extremely hard to wrap a clinched fist. Last night he did well. Usually it would be very difficult to get a picture of his opened hand. This hand is in a mitten tonight instead of bandaged. I'm TERRIFIED of what we might find tomorrow, but we have to learn from trial and error. If we could keep him in mittens instead of all bandaged up, he could have more movement of his fingers and thumbs. I'm afraid to keep them completely unwrapped at this point, even if they were completely healed.

After we do the four limbs, we wash and rewrap his torso. His back is blister free and has been since the beginning - even when it's not bandaged. I make him a little shirt with Transfer that goes over his right shoulder, and then wrap the Conco Conforming around him. He does NOT like being picked up for the wrap around. But luckily it's the last thing we do (besides a final diaper change and hair washing), so he gets over it pretty quickly.

And VOILA! The clean (sort of), sweet smelling (Focus on the head, people. Focus on the head), newly bandaged, newly FuzziBunz-ed Jonah!

Isn't he just the sweetest thing? Worth praying for huh? I cannot tell you how much we appreciate your daily and nightly prayers for Jonah. I know you may just feel sometimes that you are saying the same words over and over again at the same time every night - maybe you don't "feel" them like you did the first time you prayed. But look what you're doing! Thank you from the bottom of our hearts, from the tops of our heads to the tips of our toes. Thank you for praying for Jonah. And thank you, God, for healing our little boy.

jonah - tuesday, april 7th

Great dressing change tonight!

We got a really late start, because the reporter from the Journal came to interview us for a follow-up story on Jonah. It was a good talk, and very hopeful compared to the last time we spoke with her. She asked me at one point if I felt like a mom. I said, "I feel like a caregiver"... which sounds really bad, but that's not how I meant it. What I meant was that with so many people around and with all the help, it feels like Jonah is a community child (which is great), so I just feel like one of many who are caring for him. It's the whole "It takes a village" concept. But I don't really think I'll fully grasp the concept of "mom" until all the help leaves, we're on our own, and we start creating our "normal." I still feel like a confused kid most of the time, so the fact that I'm responsible for the life of another human being blows my mind... still adjusting. In lots of ways, though, I definitely feel like a mom - the instincts kicked in with Gabe, and I've never really been the same since.

It's so great that this time when the photographer comes, he'll be taking photos of Jonah from our house. Hooray! I'll let you know when the story runs.

I had Kathryn take pictures of the dressing change tonight, so I'll plan on posting those tomorrow along with an explanation of the process. I use the term "plan" very loosely. I know this is hard to believe, but I'm not the one who calls the shots around here these days. Just so you know, I may post some pictures that would be tough on little eyes, so maybe preview the blog before you bring the kiddos to look at pictures of little Jonah. He looks GREAT, but I'm using my crappy camera (I had been using my sisters' awesome cameras), so it blows out the pictures, and even the parts that aren't really red in person look red in the photos... all that to say that the pictures will NOT do him justice.

Off to bed. If tonight is like last night, I'll be up from 3am to 6am hanging out with Jonah. He's wide awake and content (as long as you're holding him) during that time. See? I told you I don't call the shots. These pictures were taken at 4:00 this morning.

update - monday, april 6th

Wow, you guys are amazing. I think I was thinking, "Pity, Party of 1," but I should have known I wasn't alone. Thank you for loving us. I can't understand why you do, but it sure means so much to us.

I guess I should make it more clear that I DO have help. Matt's mom is still here, and my mom is helping a lot too (she's local so isn't staying here... although she did nights for me last week - woo-woo - because they had spring break). Debbie will be here through the rest of the week, and next week my brother will be coming for a day, my mom will take off to be with us, and Debbie will be back at the end of the week. We are SURROUNDED by love and support... just wanted to make that clear. But sometimes you still feel alone, even if it is irrational. Not that I would EVER be irrational. Totally NOT my style.

Jonah's dressing change went much better tonight. He only got really upset at the very end when we were bathing and rewrapping his torso. He was ready to be all done. The home health care nurse (who also happens to be Jeannie, my best friend Kathryn's mom) weighed Jonah tonight, and he's up to 8 lbs 10 oz, so that's very good news. I did call the pediatrician today, and she has switched him to Prevacid. I'll give him his first dose with his next feeding. The appointment with the ENT is still on Thursday, and I'll only move it up if the Prevacid doesn't seem to help... although I figure it may take a couple days to see a difference. I am happy about the weight gain, but it still bothers me to see Jonah in so much pain when he's eating. The doctor said everything I'm describing sounds like typical reflux, but that he's probably just in more pain because it's likely he has some blisters in his throat. Poor thing. But if his throat is like the rest of his body, they will come and they will go. He'll heal quickly.

Matt wants me to post about specifics of the dressing change, so you'll know exactly what you're praying for, but I'm too tired tonight to go into all of that. I'll try to give some more details soon.

As far as your comments (the ones I've had a chance to read so far...) -

Jonah is on Magic Mouthwash, although his does not have lidocaine because we give it by syringe, and it's something he swallows. It's a combination of Bendryl, Maalox, and something else I can't remember... I just remember specifically that they said it doesn't have lidocaine.

We can't move dressing changes to the morning (as much as I would LOVE to get it over with), because Matt has to work, and I need his help. Also, because he's on the pain meds, we want him to be on the sleep at night, be awake during the day schedule. If we gave him the meds during the day, he'd be zonked all day, wouldn't eat very well, and would probably be up even more at night.

We DO have to keep him wrapped, even though his arms and legs are looking better. He's still getting new blisters, and you never know when or why they're going to pop up. (He had a new one on his arm, two new ones on his belly, and two new ones on his feet tonight). If he was uncovered, he would hit his arms and legs against things and against himself, and he would get blisters everywhere. The SLIGHTEST friction will cause a new blister.

I don't think he has an infection. His temperature has been good, and he doesn't seem lethargic. He's more irritable because he's starving and tired. And he's tired because he's hungry and waking up to eat a lot. (That's my guess anyway.)

That's all I can remember as far as comments at this point, but the last time I read them, there were only 78. I have some catching up to do. Sheesh.

Here is our family picture. I didn't want to post a smiling picture earlier today (you know, since I was in such a great mood and all), but for now, I'm done feeling sorry for myself. (Don't ask at 3 am.) I have lots more pictures from Gabe's spot I'd like to share, but again, too tired tonight. I need to sleep while I can.

Thanks again for praying for us. Can't you tell it's working already? Even having only read 78 of the comments, I feel so lifted up, loved, and supported. What an amazing thing to be part of the Body of Christ - to be connected by only one thing - the blood of Jesus. You know, just that one little thing. :) Through YOU, God shows me that He's not far off. He's next door, across the country, across the world... He's so close. Thank you for reminding me.

My sweet boys.

prayer request

Please be in prayer for Jonah. He's not eating well, and acts like he's in a lot of pain when he does eat. He'll take an ounce or so, and then he just starts crying. It takes at least an hour to get him to eat two ounces and half the time he won't even take that much. And when he does have a good feed, he spits up half of it. Because he's not eating well, he's also not sleeping well overnight (waking up every hour), so I'm getting frustrated and really irritable. I feel overwhelmed and exhausted.

He has new blisters all over his belly all of a sudden and a big blister on his lip.

His dressing change last night could be classified as a disaster, and we had to quit half-way through to try to calm him down. It didn't really work, so he basically cried through the whole thing. He's still on morphine and ativan, but last night, you would have thought he wasn't on anything. We didn't even get to do his right arm because he was so upset. He's getting a rash because he's hot, moist and dirty, and the only way we can bathe him is by bulb syringe, one limb at a time. He usually freaks out when we do it, so we can't really clean him well, and definitely can't get in all the nooks and crannies like we need to. I can't even give my baby a real bath.

I generally just feel pretty ticked off these last couple days at the unfairness of it all, and am having myself a big ol' pity party. I HATE feeling like that, and I HATE that Jonah is in pain and I can't take it away. I HATE that our "family photo" was taken at a cemetery yesterday, and I HATE that my baby can't even eat without hurting. I HATE that his face and head are getting blisters a lot now (since this was a pretty durable place previously), and I HATE that he's tired and hungry. I'm afraid that if he doesn't start eating better soon, we'll end up back in the hospital. Please pray that he will begin eating better and that we will figure out what we can do to help him. I'm going to give it until tomorrow and then may have to take him back to the doctor. I'm not sure what they can do, though, until we see the ENT, and that appointment is not until Thursday.

I'm completely frustrated, and if I really admit it, angry. And as much as I hate feeling it, I'm angry at God a lot of the time. I just don't get it. Please pray for me that I will regain perspective, and that once again I'll feel like God and I are on the same side... that I'll feel his arms of comfort and peace around me... that I'll draw near to him again - He hasn't gone anywhere, but He's feeling pretty far away.

may the force be with you

This one goes out to my friend Zack. Hope you like it.

Jonah the Jedi

Jonah had a rough go of it tonight. I can't figure out what's different from night to night. Jonah's a conundrum. Thanks for your continued prayers. Only two new blisters tonight - that's a good night. No new news to report.

Did I mention I'm tired?

jonah - 5 weeks old today

Jonah's dressing changes have gone well the last couple nights. (Thank you so much for praying!!!) I hope we're finally getting into a good routine. I want so badly to take all his bandages off and give him a real bath before redressing him, but what if he freaks out, he's completely unbandaged, and we can't get him wrapped again??? Very scary thought. So for now it's limb by limb, sort of the torso, and then his hair... all by bulb syringe. But man, I could sniff that little head all night after I wash his hair... so sweet.

I have to tell you guys - unwrapping him every night is a remarkable gift. We are literally watching God perform a miracle right in front of our eyes. Every night his skin looks better and better. His arms and hands are currently completely blister free, although we continue to wrap them for fear of leaving them unprotected. He has beautiful skin. I don't know if it's really the most beautiful skin in the world or if I just have a new appreciation for skin. It could be the aquaphor. :) His legs are looking much better, although I think his left knee may be permanently scarred. It looks healed but is still a purple color. His upper thighs are looking much better, and he's only getting isolated blisters now on his legs and feet. We thought about just putting mittens on his hands tonight and not wrapping them, but I'm worried he will rub his fingers together and cause more blisters. Wrapped he's limited in motion and encumbered. Unwrapped he's at risk. I dunno.

Grandaddy (Matt's dad) arrived today, but Kim (Matt's sister) didn't make it after all because all the flights from NY were canceled... weather I think. I know she's bummed, and we are too. Peyton (my brother) and his wife, Amy, and kids will be here at some point this weekend as well as my parents. I love having all our family around, and it's especially nice having the extra hands. It usually takes three people to change his diaper. One to hold the paci, soothe, and keep him from scooting off the table, one to prepare his butt patch and do the cleaning and aquaphoring, and one to lift him gently by the knees to put the diaper under. Shwoo. (And I probably don't have to tell you guys this, but breast-fed babies poop A LOT.)

We have a busy week next week, and I'm not looking forward to having to lug Jonah around town - he's not the biggest fan of the car seat, nor am I. We have several appointments next week including OT and the ENT (on Thurs). His stridor has not been nearly as bad these last couple days (although he's having a lot right now as he sleeps and I type). I usually don't notice it except right after he eats. He gulps no matter how much I try to slow him down. He's quite the voracious eater for the first couple ounces and then he tends to wimp out at the end. I'd still like to see him eating more - back to the 90 or 100 cc's (at least 3 ounces) he was eating at the hospital. He's probably averaging 60-70 cc's at this point. His current weight is 8 lbs 4 oz - just in case you were wondering.

The weather is supposed to be beautiful here this weekend, so if it's not too windy, we plan on taking Jonah to Gabe's spot for the first time. I'm excited. I haven't been out there since right before Christmas, and I'm dying to get back. I hope the ducks and geese are back. It's so pretty, and I know Jonah will want to spend many an hour there. I hope it will help him feel more connected to Gabe somehow. I miss Gabe a lot these days. We're approaching what would have been his one year birthday (April 22nd). It's hard to believe it's been a year. As I do all these baby things with Jonah, I just imagine having done them with Gabe. I hope he's proud of us. He makes me want to be a better person. I can't wait to tell Jonah all about him.

Here are some pictures from today.

Time with daddy. It looks like he's smiling in a lot of these pictures, although he's not - at least not in reaction to anything yet. I guess a few more weeks?

Tummy time on the sofa. He raised his own head and put his arms under himself like that. Too cute.

Another sweet one. This blister on his face started out tiny. We've drained it three times. I think it's finally done growing. Poor thing. Takes up the whole side of his face.

more photos from home

Jonah looked so cute (and hilarious) with his arms sticking straight out, I could barely get him hooked in because I was laughing so hard.

Jonah's first construction delay. No worries. He was only screaming bloody murder in the back seat. By all means, put up your stupid "slow" sign.

Deac and Jonah meet for the first time. Deac has been basically indifferent to Jonah, although every time I talk in my baby voice, Deac comes over thinking I'm talking to him. Poor thing. I'm sure he'll soon realize he's no longer top dog.

Jonah on drugs (did not really have the sedation effect we were hoping for last night, as you can see). Mommy without make-up (a luxury these days).

Tummy time with dad.

letter to jonah

If you haven't come across it already, please head over to Matt's Aunt Katherine's blog to read this beautiful letter to Jonah. I cried pretty much the whole way through it, so you may want to grab your kleenex, you know, if you're a complete emotional psycho freak tenderhearted like I am.

Plus, Katherine can pretty much write the socks off anybody, so you'll enjoy being there. Just what we all need, right?... one more blog to get hooked on. Happy stalking!

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.