Tuesday, March 31, 2009

jonah - tuesday, march 31st

Jonah's home, and it's great and tiring and overwhelming and awesome and intimidating and completely fantastic! And I'm tired. Pumping and feeding a baby all night is some hard work.

Things are much better with Jonah today after a rough go of it yesterday. He was pretty unhappy most of the day yesterday, and I only took pictures during the quiet moments. :) He did really great during his dressing change last night (thank you for continuing to pray... you guys are literally helping take his pain away... pretty amazing thought, huh?), and he did well overnight too. He's started eating better again, so I'm hoping that means the Zantac is working, and Jonah's back on the eatin' train for good.

I have a couple concerns. He really acts like his throat is hurting today. He's fussy when he eats, and he cries when he yawns. Hopefully some of this is from reflux, and we'll see that diminish too, but I'm fairly confident that he's got some blisters in his throat, and swallowing is painful. It breaks my heart to think about what may be going on in there, and that the only way to find out for sure would be for an ENT to send a scope down his throat (which obviously poses its own dangers). He also snores a lot, has some high pitched breathing sounds, and sometimes acts like he's stopped breathing for a couple seconds and has to gasp to catch his breath. Nobody but me seems very concerned yet, but when you know your child is at danger for respiratory problems, it's hard to distinguish between normal baby sounds and trouble. I want my Dr. Heather back.

I'm so happy to be home, where when Jonah is sleeping, I can sit on my own couch, eat my own food, watch my own TV (although I haven't done that yet), and take naps in my own bed... or just take naps period. I better like home, because I don't imagine Jonah and I will be venturing out much in the month of April. Hopefully by May, I will feel a little less germaphobic, and the weather will be warm enough I won't worry so much about colds and the flu.

Please continue to pray for Jonah. On the outside, he continues to improve (although he still has new blisters every day... a new one on his face today - sad), but I am concerned about his trachea and esophagus. Please continue to pray for his transition home, his breathing, and for his little body at 8:00 tonight as we once again put him through another dressing change.

Monday, March 30, 2009

Pictures From Home

Patrice asked if I could post some pictures of the day. They started dressing changes about an hour ago and from upstairs it sounds like it's going pretty well so far. Not sure if Patrice will have a chance to get on here tonight but please continue to pray for Jonah's transition home.

welcome home jonah

jonah is home!!! he's having a hard time adjusting, but we're glad he's here. please pray that his dressing changes go well tonight. he is already so agitated. thanks for all the prayers! patrice is not sure if she will get to post tonight. things are pretty crazy around here, but he's home, so we're happy. :)

aunt shaina

Sunday, March 29, 2009

jonah - sunday, march 29th

Very tired tonight... big day tomorrow... but...

Jonah did well during his dressing change tonight. I think he's getting used to the routine. Too bad tomorrow his world is getting rocked. His schedule will be the same, but I'm sure the first few nights at home will be challenging.

He has not eaten well the last couple days. We took him off Zantac on Thursday (Zantac makes it harder for your body to get rid of bacteria), but we had to put him back on it today. He definitely acts like he's got some acid issues. Hopefully his eating will pick up as that gets back in his system, and it won't delay our getting to come home. We have an 8:30am appt with our pediatrician on Tuesday morning, so I'm hoping they'll just let us follow up with them - it may take a day or so for the Zantac to work.

Other than that, it's looking like tomorrow is still the day. We can't wait, but it's intimidating to say the least.

Please pray for Jonah as he spends his last night in the hospital. Pray that the transition to home will be smooth for him, and that his dressing changes will continue to go well here too. Please pray that the Zantac will work and that his feeding will pick up again (so he will be getting the nutrition he needs - EB babies need more calories than most babies, so it's scary when he doesn't eat). And please pray for us as we finally get to bring our baby home - that we will have patience, peace, and wisdom to take the best care of him possible. Thank you for continuing to lift us all up in prayer.

What a happy day awaits us.

Saturday, March 28, 2009

jonah - saturday, march 28th

Another great day for Jonah! Ever since I asked you guys to pray for Jonah at 8pm, his dressings have gone great! We had all four limbs and his torso dressed and his hair washed in an hour and 45 minutes. To you EB moms out there, that probably sounds ridiculously long, but for us that's awesome. We're still getting the hang of things. :) That's down from about 3 hours when the doctors and nurses first started doing them - of course he's improved a lot since then too.

Thank you for your continued prayers. Jonah continues to blow our minds with his improvement. Although he gets new blisters everyday, the healing of his skin amazes us. He looks about 1,000% better from the day he was born, and actually has skin colored toes and fingers. His arms are looking awesome, and his legs are getting better too!

He's so beautiful. I can't get over it. I was up in his room tonight and looking at his bassinet in our room and his swing in the living room, and I just can't believe we FINALLY get to bring a baby home. It just seems too good to be true. And it's not just ANY baby. It's Jonah. Strong, sweet, beautiful Jonah. I love everything about him. He's absolutely perfect. And God gave him to US. Amazing.

One of Jonah's diapers - new and improved!

Night Night hugs
Clean, curly hair

to the ONE

I sat down at this computer to write a post entitled "to the one." And this post was going to be my angry rant against judgmental people who leave nasty comments on strangers' blogs about things and situations they can't begin to imagine, without full knowledge, information, or empathy. To people who leave judgmental comments to mothers and fathers who have lost much, suffer plenty, and are only trying to do the BEST thing for their son, even if it's risky, unpleasant, painful, or difficult. And it seems it always is.

But then I read this and this.

And I decided that it wasn't necessary. Stephanie is right. When God is being glorified through a situation or people are falling to prayer in a way that maybe they haven't done in a while, Satan will attack. He will do whatever he can to take eyes off of God, eyes off of a sick little boy, eyes off things that are pure, excellent, and praiseworthy and he will try to put those eyes on things that are negative and angry.

So, I'm letting it go. And I want you guys to let it go. I appreciate the support and all the comments in response to the comment, but let's let it go. And if there are more negative comments, just email Jonah's address and let me know it's there (just in case it takes me a while to read it), but I don't want to give much attention to that kind of thing. I plan on this being my last post on this subject. As much as I love you for sticking up for me, I just don't want us to validate things like that.


Now this post is entitled "to the ONE." And it's to the ONE who is healing my son. It's to the ONE who gives us unimaginable peace and comfort day in and day out. It's to the ONE who made Gabe's death a victory. It's to the ONE who rocks my Gabe to sleep at night and cares for and loves him more than I ever could. It's to the ONE who has saved me, has saved Gabe, and has saved Jonah, one way or the other. It's to the ONE who died for me so I can live. And it's to the ONE who has forgiven me, so I have no choice but to forgive others. (And believe me, forgiveness is not something that comes easy to me). This post is to the ONE that knows my heart and my intentions and holds me accountable for those rather than the mistakes I make. And people, I've made plenty. And I'm sorry to those of you I've ever wronged, to the ones I've judged, to the ones I've hurt. I want to put eyes back on the ONE who loves us when we're unlovable and forgives us when we're unforgivable.

To [the ONE] who is able to keep you from falling and to present you before his glorious presence without fault and with great joy— to the only God our Savior be glory, majesty, power and authority, through Jesus Christ our Lord, before all ages, now and forevermore! Jude 1:24-25

Friday, March 27, 2009

jonah - friday, march 27th

Jonah is one month old today. I can't believe it. It one way the time has flown, and in another way it's just felt like one big, long day.

His dressing change went well again tonight. But he had to get his first Hep B vaccination and he was circumcised (don't worry - we checked with Dr. Fine first) tonight, so he got pretty mad during all of that. In his agitation, he wiggled off both of his arm bandages, so we had to redo them - this time with him angry and agitated. Not fun.

I'm exhausted, but just wanted to say thank you for praying Jonah through this first month. I wasn't sure he'd ever make it to four weeks old. Now, I go to bed hopeful for a full, long life for Jonah - full of laughter and "normal" boy things. Should I be scared?

He is the smiliest, smirkiest baby I've ever seen. He'll get really tired and start rolling his eyes back in his head, and he'll just be smiling away (and once he even laughed out loud). I'm pretty sure he's hanging out with Gabe in his dreams, and they're conspiring against me. I think I'm in for it - and I can't wait.

Look y'all, no cast!

jonah - thursday, march 26th

Thank you for praying. Jonah's dressing change went FANTASTIC tonight! He did not utter a peep and slept peacefully through the whole thing. I prayed over him before we started, that God would send his angels to watch over him and that He would give him peace and comfort. And I have a funny feeling you guys were praying that very same thing. Thank you for caring about our sweet boy and lifting him up to the Father.

He who dwells in the shelter of the Most High will rest in the shadow of the Almighty. I will say of the LORD, "He is my refuge and my fortress, my God, in whom I trust..." He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart... For he will command his angels concerning you to guard you in all your ways... "Because he loves me," says the LORD, "I will rescue him; I will protect him, for he acknowledges my name. - Psalm 91:1-2, 4, 11, 14

Thursday, March 26, 2009

monday, monday - so good to me


MONDAY'S THE DAY! Jonah's coming home.

Our family conference is today at 4:30 to discuss the details of Jonah's coming home, at-home care, and follow up visits to pediatrician, dermatologist, nutritionist (?), geneticist (?) etc. I don't know who all he'll have to see, but it's ALL worth it.

I can't wait!

Wednesday, March 25, 2009

jonah - wednesday, march 25th

*** UPDATE ***
Just spoke with Nurse Christy - Jonah ate and slept his way through most of his bandage change. They started with his left arm, then left leg, then right leg, then right arm. When they did his right arm, he kinda went crazy again ("pretty ticked off" were Christy's words). What is the possibility of nerve damage with healing after severe skin loss? His right arm is starting to look much better, but he acts like it kills him. I just don't know what's wrong.
Please pray for Jonah's right arm and hand. (How's that for specific?)

Jonah had a good day today, but I left the hospital before his bandage change. I am extremely tired tonight, and had an emotional semi-breakdown, so the nurses told me to come home - they have it under control.

I just felt like I was no use to him tonight, and if I was already crying before it started, I knew that if it was a night like last night, I would completely lose it.

So anyway, I don't know how the dressing change is going, but we will call in about an hour and find out. Please keep praying for him.

I'm somewhere between relieved to be home before midnight and feeling completely guilty for having left him. I know in my head that it's okay that I left, but in my heart I feel like I have abandoned him.

Here are pictures from today.

Snuggles from Maw-Maw.

And Uncle Andrew

And my most favorite ever...

jonah - tuesday, march 24th

Jonah had a really horrible time during his bandage change tonight. They lowered his morphine .1 (for a total of only .2 lower), and he was almost inconsolable the whole time - screaming, flailing, writhing... the worst yet (since I've been in on the changes anyway). I actually had to end up holding him and feeding him a bottle while they dressed his arms and legs.

It broke my heart. I don't know how they expect us to do it on Tylenol only, but I don't want him to be on strong drugs either. I think the Ativan can be addictive too. I don't know if this will slow us down coming home or not. I know that distraction will work best during dressing changes, but how do you distract a 4-week-old?

Please be in prayer for Jonah tomorrow night if you think about it during his dressing change time (we usually start at 8 pm eastern). We need divine intervention, and I have not been prayerful enough about his pain management. I was going to leave the bandage changes up to Sabrina and OT tomorrow night, so I could come home early, clean a little, and get in bed, but now I doubt I'll be able to leave him. Not that I don't trust them to do it (because I definitely do), but I'm just afraid he'll need me for consolation, and I won't be there. What if he needs me, and I'm not there? I literally can't bear the thought.

Here are a few pictures from the last couple days. Besides his dressing change, he's been a sweet, sweet boy - which I'm pretty sure is his personality. But DON'T mess with him when he doesn't want to be messed with. I really need to brush up on my "dressing a closed fisted hand" and "bandaging a flailing leg" skills. I am NOT smooth.

The tops of his legs are still horrible with new blisters every day. I'm hoping Transfer is on its way tomorrow (although they've told us it will be the beginning of next week before we will get any), because it's just getting worse and worse, and I feel like the Transfer holds better than anything else. Everything else slips down his leg and leaves exposed raw places at the top- we've tried Lite, Mepitel, and Vaseline gauze (in addition to the Transfer). I'm out of Transfer samples, but thanks to those of you who sent me some. I like it the best, but the Lite works well too. His belly is also looking really bad. He also has a new blister on his chest from where he clamped down and decided to hold his breath during bandage change a couple nights ago. The nurse had to rub in a circle on his chest to get him to breathe, so now there's a big blister (three times the size it was this morning) on his chest as a result.
On a brighter note, we are seeing substantial healing in his hands and feet, although to you guys it would probably still look really bad. If you could have only seen the before pictures... I'd like to post pictures of some of what's under the bandages to give you an idea of what Jonah is going through, but I know many of your kids look at the blog and want to see baby Jonah, so I don't really want to post that kind of thing. Plus, it's just sad. But please know that although you see precious pictures of his face, there are many very bad spots under those bandages that need your prayer and God's healing. Thank you for your specific prayers for his little hands and feet. The flesh is mostly pink now instead of red and purple. They are still bleeding some, but a vast improvement over a couple weeks ago.

Okay, now to the pictures.

Monday, March 23, 2009

jonah - monday, march 23rd

Another good day with Jonah.

I spoke with doctors about leaving the hospital early next week, and they said they understand my concerns, and that the expectation is reasonable. Don't worry, unless something changes, I don't plan to break Jonah out without medical consent. I think we're all on the same page, knowing that I can care from him from home just as I have been in the hospital and knowing that he is much more susceptible to bad infection there (hospital) than here (home). We're going to have a conference with dermatology, neonatology and Jonah's potential pediatrician later this week to discuss. We will work over this next week to slowly lower his morphine dose, but I'm not sure how long it will take and whether or not they'll let us come home on it. I'm (along with lots of help) trying to get our ducks in a row concerning supply ordering, arranging for home health care etc. We've applied for all the disability income stuff and Cap-C. Thanks for all your suggestions and comments. There's an excellent social worker at the hospital helping us with all the details.

I'm very sleepy tonight, so I'm not going to post more now. I go to bed with my heart heavy for Stellan and praying that God will yet again perform a miracle in his life. Having lost Gabe already and having such a fragile life in Jonah, I know only too well how MckMama feels. My heart aches for her, and I just pray that both of our boys will be home very soon, where they belong - living full and long, long, long lives that glorify the Father who has saved them.

pray for stellan

Since most of you came from MckMama, I'm sure you know by now that Stellan is in the hospital with an extremely high heart rate - in the upper 200's to lower 300's (what almost killed him inutero). Please be in prayer for Stellan, that his heart will flip back to a normal heart rate. They have tried several manuevers and medications to get his heart to flip, all to no avail.

God, please let Stellan live, so he can tell his story - your story. Please give MckMama and Prince Charming peace as they once again fear for their son's life and turn to you for peace and comfort. Please heal his heart, Lord. Be a shield about him and wrap your arms around him. Please give his family your peace - that passes all understanding and give them small victories and hope for tomorrow. Give them a miracle.

Sunday, March 22, 2009

jonah - sunday, march 22nd

Today was a good day with Jonah. He did well with his bandage change. I think the higher dose of Ativan (still not a large dose) is the ticket. I think we could probably start weaning him off the morphine now. (Ugh, I hate that I just wrote that - too good to be true?)
His blood culture remains negative, although he is still on Keflex because of his "wound culture" (the biopsy spot that's a little infected). At one point, they actually thought he had MRSA (resistant staff infection) on his skin, but it looks like the Keflex should take care of it after all. He began taking Bactrim (an oral antibiotic not typically used on babies under two months) when they thought it was MRSA, but he's been able to stop that now. Bactrim is not the greatest option because it could have made him jaundiced or neutropenic (low WBC count), but is still much better than IV drugs. Had that not worked, we would have been looking at a broviac.
I'm beginning to feel each day there is one day closer to an infection that will require IV antibiotics. As great as they are, they can do very little for him at the hospital that we can't do at home. We can do his wound care, and we can go home on Ativan and Tylenol or I can wean him off the morphine myself. The risks are beginning to outweigh the benefits. Unless there is a solid reason we need to stay, I'm going to push for us to be out in a week. If Jonah gets an infection, it means broviac, which means intubation, which means a very high possibility of respiratory problems (something we have not had to deal with yet - thank God, but is very common in Junctional EB patients). Right now, I'm thankful for the extra hands, but I know we will have lots of help once we're home, and I think all the nurses Jonah has wooed will be glad to stop by for a visit. Brenda? Sabrina? Stacey? You know you can't resist.
Just look at this face...
I LOVE me some Jonah snuggles. What can I say? He's spoiled. He's rotten. It's the best.
Uncle Peyton FINALLY gets to hold Jonah.
A handy dandy cloth diaper designed especially by Nana. A really soft knit t-shirt with a pocket. We slipped a trimmed down pampers in the pocket and voila! Soft on the outside, absorbent on the inside. Still a little leakage out the sides, but certainly an excellent work in progress. Go on with your bad self, Nana!

Saturday, March 21, 2009

jonah - saturday, march 21st

Hi friends.

Another great day with Jonah! It's as if he got the memo about the Non-Herlitz too! We've all had quite the spirit boost. His blood culture remains negative, although the one from his biopsy spot is growing a couple different "organisms." They are typical skin bacteria, though, so it's not systemic, and they don't seem concerned. I think they have him on the Keflex more as a precaution, as he doesn't seem to have an infection at this point. Praise God!!! His lymph nodes continue to be swollen, but it's probably just because his body naturally has lots and lots of drainage.

I have some cute pictures from today but am way too exhausted to post them. Be on the look out for those tomorrow (you know, unless life happens... as it tends to do).

We've increased his Ativan dose in hopes that we will be able to begin weaning him off the morphine, so he can come home on Tylenol. Tonight we did not give Tylenol and Morphine together (as we had been... possibly the reason he kept spitting it up), but gave only Morphine and increased his Ativan dose a little. This seemed to work out great. He was very relaxed and only cried out when we began to bathe him (one limb at a time). But he's clean, people. And smelling like a baby!!! I know he'll be all greasy and smelling of Aquaphor and gauze again, but for a moment it was nice to kiss all over clean skin and take in the baby smell. Hopefully if this combo continues to work, we can slowly wean him off the morphine and be one step closer to home. In one way, I can't wait, and in one way, I'm scared to death, but I know God will be with us. If you had told me three weeks ago that I would have been able to do all I've done in the last 23 days, I would not have believed you. The strength and comfort He has provided have been amazing. I can do all things...

May you feel His strength, peace, and comfort as He carries you down whatever road you're on.

Isaiah 40:29-31
He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.

They will blister, and they will heal.

great news

Jonah did fairly well during his dressing change tonight. Still had some cries of discomfort and LOTS of wiggling and fighting, but after a second shot of morphine (threw up the first), was in little to no pain... just took a while to kick in. He is very easy to dress when he's sedated by the drugs, but I hear rumor that they want Jonah to be on ONLY Tylenol for us to go home. Although I know this is best, I cannot imagine being able to get him still enough to do proper wound care and bandaging on JUST Tylenol. The patch-up jobs we do during the day when he's on Tylenol only are close to impossible and "crappy" at best. And that's when we're NOT having to do his OT exercises (the part he hates the most). Unless a lot changes, they are going to have to find some sort of combo of drugs they feel good about sending him home with if we (or anybody for that matter) are going to be able to do the dressing changes.

But enough about that...

Dr. Ali (Jonah's dermatologist) had left a message on my phone at some point today. I didn't get it until about midnight. She said that she had faxed all of Jonah's biopsy results to Dr. Fine (Vanderbilt specialist; EB extraordinaire) yesterday, and after looking over everything, he said that he is very, very (maybe only one "very"... I can't remember) optimistic that Jonah has the NON-HERLITZ form of EB. This is VERY good news. Praising God like a mad woman. Trying not to dance around the room. (More because our room currently looks like a tornado just passed through than a dignity thing... I have no shame). I thought you guys were just praying for no infection. Very sneaky... very sneaky.

Here are a couple pictures of a very cool jacket-sleevey thing we tried to rig up for Jonah to help keep his arm bandages on. It's one of a pair of leggins (Thanks, Aunt Amy) made out of a very, very soft, silky material. We cut two little slits in it, so now he's wearing it across his back and on his arms. It's pretty loose on him and stretchy, so it may do no good, but worth a shot! I don't think it will cause new blisters, but who knows???

Don't be jealous that Jonah rocks your socks off. No worries. You guys are cool by association.

A few questions for my EB peeps (if you don't mind):

1 - What kind of pain meds did you go home on and how did you keep your baby still to do OT and dressing changes? (For me it's less a pain issue - although of course I don' t want him in pain - and more of a sedation issue as far as needing him to be still - or at least manageable.)

2 - How do you keep the top of his bandages from rubbing new blisters on unblistered skin? We try to keep the Vaseline gauze wet with Aquaphor (the Stanford video says the leave some gauze sticking out the top, so the Curlex (sp?) doesn't rub), but he always seems to have new blisters right above where I stopped the bandage the previous night. I tried a thick strip of mepitel around the top tonight, hoping it will stay more moist than the Vaseline gauze. (We are back to Vaseline gauze because that's what they use in the Stanford videos... I'm not sure what they didn't like about the Mepitel/Mepilex... whatever it was. I'm sure it's just trial and error figuring out what keeps the most secure).

3 - Any easy diapering solutions? It's not going to be practical to cut the elastic out of diapers and let him just lie on one once we get home. Having to change his sheets/blankets all the time and redress/patch up his leg bandages because of urine and stool are not practical options for once we get home.

(You can comment here or email Jonah's address if you want... THANK YOU so much!!!)

Seeing as how it's almost 2 am, I should probably go to bed. Thanks again for loving Jonah so much and praying over and over and over again. We are encouraged by tonight's news, but are still dealing with the possible infection issues. GO ORAL KEFLEX!

Hope everyone has a great weekend.

Friday, March 20, 2009

jonah - friday, march 20th

A quick update before I go back for Jonah's dressing change...

He has been much less fussy today, but very, very sleepy. This could be because he hasn't slept much in the last two days, but it could be he's getting sick. His temperature is currently 99.2 (a good range for a baby his age is 97-99), but this is after being unwrapped a lot today (many bandaging patch-ups) and having been on Tylenol all day. I just wonder how high it would be with no Tylenol and having been wrapped up.

His biopsy spot is also infected.

He only ate 25 cc's at his 6:00 feeding. Usually, he's ravenously hungry.

Please pray for Jonah - that if he does have an infection, the oral Keflex will take care of it. If it doesn't or the blood culture and the culture they did on the biopsy come back saying he needs something stronger, we will be facing the reality of a PICC line or broviac. Both of those are NOT good. The PICC line is very rough on his skin, they would have to put it in his neck, and it would be difficult to secure (thus lots of rubbing around and causing blisters, with a good possibility he would somehow rip it out anyway). The broviac would be bad because it would mean Jonah would have to be intubated (a tube down his trachea).

Please, please pray that the oral antibiotic will be enough.

Pray that Jonah is only tired and not sick. Please, Lord, no infection.

Pray that he will be relatively calm and pain-free during his dressing change.

Thank you for lifting him up.

jonah - thursday, march 19th

Jonah had a rough day today. He has been incredibly fussy the last two days. Actually, "fussy" is the understatement of the century. He has basically been screaming every second he's been awake that a bottle was not in his mouth. I don't know what's going on with him, but he's been the total opposite of the baby he was on Saturday and Sunday that was content and seemingly pain-free on only one dose of Tylenol all day.
He did do well during his dressing change tonight, but we're unsure of exactly how much medicine he was on. He threw up his first dose of morphine and Atavan, and had to get more... so knowing exactly how much was in his system is a little difficult. Although there has been some talk of the road to home, we were told today that we're still looking at "several" weeks. They have to ween Jonah off morphine, find some pain medication he can have from home, and get his wounds in better shape to where his pain will be manageable with just Tylenol. This will be a long process involving us letting our support people in on his nightly dressing changes one at a time, "living in" where we take care of Jonah in a suite at the hospital, arranging for a home health care nurse, making sure all our bandaging supplies are lined up etc. before we go home... so we still have a ways to go.
As we were doing his dressing change tonight, I noticed a big lump under his arm pit. He has swollen lymph nodes under both his arm pits and in his groin. His WBC count is up, so the assumption is he probably has an infection. We won't have the results of the blood culture for 2 to 3 days. For now, they are starting him on oral doses of Keflex. Please be in prayer that the oral drugs will be enough to kick this thing - if the blood culture comes back saying he needs some big gun IV antibiotics, we'll be looking at another PICC line of some sort -either in his neck or the broviac. If he has to get the broviac, he will have to be intubated - that is very, very bad considering there is usually tracheal involvement with his kind of EB. NO MORE TUBES! I don't know if the infection might be why he's been so inconsolable. He was also pretty gassy today, and I guess there's still a possibility that he's lactose intolerant (although we've had no indication of that before now). Please pray that we can figure out why he's acted like he's in so much pain and that we can remedy it. I know all you moms (and dads too) know how it feels to know your child is hurting and how completely useless and desperate you feel when you can do NOTHING to make it better. His constant crying was about enough to send me over the edge today. I was in tears myself several times.
Here are some pictures from the last couple days (when he wasn't screaming):

Wednesday, March 18, 2009

jonah - wednesday, march 18th

We got the diagnosis today. Jonah has some form of Junctional Epidermolysis Bullosa. We are not sure which kind. If he did not have Collagen 17, we'd know for sure he had non-Herlitz. He does. If he did not have Laminin 5, we'd know for sure he had the Herlitz form. He does. So both things are present, but obviously not in correct proportions or something. I don't really understand it. Basically, there is a wide spectrum, and all we know at this point is that Jonah falls somewhere on that spectrum.

The short version is that we don't really know where Jonah stands, and we still don't have a prognosis. Herlitz is the form where babies don't make it out of infancy. Non-Herlitz has a much better long-term prognosis. In any kind of Junctional, there is a risk for respiratory issues and teeth/mouth problems... among other things. The tests have told us all they will tell us. Observing Jonah over time will tell us the severity. We will probably not really know anything more until Jonah is close to a year old.

Here's the link to the DebRA site to give you an overall idea:

That'll catch you up to speed as far as what we know. Like I said, I haven't really done much research on the different types until now.

I really have no idea what it all means or if this is good news or bad news. Please just be in prayer for all of this - as I know you already are... that Jonah will lean the less severe way... that we will continue to see improvement and healing in Jonah's skin. He is SOOO strong. I really can't believe it. Even the OT and PT were talking about how strong he is. It is so hard to bandage him and do his range of motion exercises. But man, he's a fighter.

Maybe it's okay that he doesn't fit into a specific category. I think I like that Jonah's diagnosis is not so set - leaves it pretty open to God's interpretation, doesn't it? Leaves lots of space for prayer and miracles.

Thank you for joining us in praying without ceasing - all days, all hours, all time zones. Jonah is covered. You guys are amazing.

Tuesday, March 17, 2009

jonah - tuesday, march 17th

This will be another short post. I'm very tired.

I'm feeling sad tonight, overwhelmed by the reality of EB and scared about Jonah's diagnosis. Even if I act strong, I feel weak and inadequate. Jonah ripped both his arm bandages off at different times today, and I had to redress them (with a nurse's help) when he was on no pain medication. Stressful. Painful. Frustrating. Jonah was screaming, inconsolable. It was so hard. I just keep imagining that happening when Matt is at work, and Jonah and I are alone. How do I keep him from hurting himself and prepare all the gauze and bandages and redress his arm by myself? Overwhelmed.

He had to get extra morphine during his bandage change tonight, but settled down after we got done messing with his first arm. The hard part is the OT, not the dressing change... although he hates both. I did the dressings by myself while a nurse held him still.

Someone sent us an obituary today of a man who lived to the age of 59 with the most severe type of EB. Although it was encouraging to see he had lived so long, the obituary article went into detail about his fingers being fused together into mere "stumps", eating a liquid only diet, having to get one of his arms amputated, being shunned by his community, people thinking he had AIDS or Leprosy, and finally, him dying, disillusioned with Church and angry at God "who never gave him a break."

I wonder what the future holds for Jonah and how he will handle it all. I'm so sad for him and feel completely helpless that I can't take it all away. I know Jonah is changing lives and giving people hope, but man, sometimes I get really tired of being an "inspiration," and I just want him to be healthy and pain free and "normal". I want him to be able to wrap his hand around my finger without it hurting and without leaving behind a blood stain. I want him to be able to wear baby clothes and regular diapers.

I wonder if God has brought him into this world just to take him out again. I wonder if my heart could take it. I wonder if my faith really is strong enough to survive it if Jonah leaves. I miss Gabe. I'm broken tonight, praying for renewed hope and new mercies for the morning.

Jonah continues to be strong, and my God continues to be mighty. But I feel like I don't believe enough and don't have faith that's strong enough. I know that in my weakness, He is strong. But He doesn't promise us healing for Jonah or even his survival. He promises to work for the good of those who seek him and to make their paths straight. But what exactly does that mean?

I just wish, as I lie here in bed, that I had an 11 month old sleeping upstairs in our beautiful nursery and a 2 1/2 week old sleeping beside me in his bassinet.

I want Jonah to be healed. I want his pain to go away. I want God to snap his fingers and give me the healthy version of Jonah that I prayed for on my knees for eight months. Is that too much to ask?

I'm not angry. I'm just so sad and confused and broken. Please pray for us.

my boys in blue

Monday, March 16, 2009

jonah - monday, march 16th

Jonah had another good day today. He took all of his bottles and is beginning to eat more each time. They have said that if he eats an average of 70 cc's each feeding, he can skip his 9pm and 12am feedings without the tube having to go back in.

Matt and I were in on his dressing changes tonight. I wrapped one arm and one leg by myself (with the help of Sabrina). The wrapping itself wasn't that difficult, but it was really trying doing his exercises. It was just so sad having to hold on to his raw arms, hands, and feet and force him to move them when you know it hurts. It was probably harder on us than it was on him. He's so strong. He only whimpered a couple times when we messed with the really bad spots. The combination of medications and timing seems to be doing the trick. I think it was so difficult because it was a reality check- just realizing how raw his hands and feet still are. They may have healed some, but mostly they're just as bad as they were the day he was born. And I'm not sure how much improvement we can actually hope for. That may depend on his specific diagnosis. He doesn't seem to be experiencing nearly as much pain during the day and can make it on just one dose of Tylenol.

The audiologist came today and did Jonah's hearing screening. We hope it's the first step on the path to home. He passed by the way - the first of many A's in his future.

I'm pretty tired, but I'll be sure to post some pictures tomorrow.

Today's shout-outs:
- To Danielle, for my awesome blog redesign. She's very talented and has worked very hard with minimal input from me. She did a great job. I love it. Thanks, Danielle.
- To Matt's Aunt Katherine, who purchased the blog redesign as our baby gift months before Jonah arrived. Because of our current situation, I put it all in her hands, and she exchanged tons of e-mails with Danielle over the last couple weeks discussing all the details. Thanks for all your hard work and caring about it like it was your own. What a great gift! (I guess God knew my audience would be slightly larger than it was before.)

Sorry this is so late. I would have had it up an hour ago, but spent a very long time reading all the cards and looking at all the care packages we got in our PO Box today. Matt and I are constantly amazed at how many people love us and are praying for Jonah. We could never express how much it all means to us. The word "thank you" sounds really lame, but it's all we've got... so... THANK YOU!

Specific prayer requests for Jonah:
- that his hands and feet would begin to heal... especially his hands, which haven't changed much at all.
- for his diagnosis that we hope to have by Wednesday. (I'm dreading it...unfortunately clinging to the "ignorance is bliss" policy)

Hope you all have a great night. My posts will probably be late from now on, since we have dressing changes at night now, and we are participating. I don't really have time until we get home from the hospital. I guess you west coasters will have to pick up the praying slack, since the eastern seaboard folks need to get in bed... seriously, what are you guys still doing up???

Sunday, March 15, 2009

jonah and the perfect day - sunday, march 15th

Once upon a time in a land not so far away, a land that flowed with aquaphor and vaseline gauze, there lived a little baby boy named Jonah.

And for some reason that only God understood, people all over the land loved him. People all over the whole world just prayed and prayed for him - people from most of the United States and places far, far away like Germany, Australia, India, China, Pakistan, and even the United Arab Emirates. For some reason, Jonah had stolen their hearts and had them wrapped around his itsy bitsy finger. (We say for some reason that only God understood, but Jonah's mommy thinks she understood a little bit, because she felt the same way that all of them did, and she fell more and more in love with him every day).

And one day, after so much praying and praying, Jonah had a perfect day.

It all started when mommy and daddy arrived at the hospital around 9:30 in the morning. Mommy got him out of bed when they arrived, and his family snuggled him ALL DAY LONG.

First, he got mommy and daddy snuggles.

Then, he got snuggles from...

Aunt Sarah...

Aunt Kim...



and finally, Aunt Shaina.

He took all of his bottles like a champ.

He spent many hours with his eyes open, lovingly gazing at his parents. He spent the whole day pain free and content.

And finally, when the time came for his bandage changes, his mommy put him in bed (for the first time in 11 hours) and prayed over him. And all the people all over the world prayed for him. And guess what? God heard each and every prayer, and He answered them with a big, fat okey dokey. And Jonah was pain free during the whole ordeal. He got his hair washed and looked just as cute as a button.

And then his mommy kissed him, and he smiled.

It was the perfect day everyone had been waiting for. And then Jonah's mommy and daddy went home thanking God for the wonderful day He had given them and thanking all the people in all the world who had prayed that it would happen.

And little baby Jonah fell fast asleep, dreaming of the day he could come home, and have the very same kind of day in his own house, in his own clothes, with a little Deac-the-dog lovin' mixed in. And he thought to himself, "Maybe that day is not too far away."

The End