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.

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.
-Sarah

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

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.

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.


So...


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

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

monday, monday - so good to me

So...

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!

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.

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.

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!

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.

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):

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:
http://www.debra.org/modules.php?op=modload&name=News&file=article&sid=18#10

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.

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

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???

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...



Pop...



Nana...



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

update

Jonah had a really rough time during his bandage change tonight. Almost the perfect day. Please pray that tomorrow night will be better. I hate to see him in so much pain.

jonah - saturday, march 14th

Jonah has had a great day so far! He is 5 for 5 drinking his whole bottle!

At rounds, they just kind of recapped for the new doctor the medicines he is on etc., and then there was nothing else... nothing. Jonah is stable enough (at least for today) that they did not have to change a thing. I couldn't believe it. I sat there for a minute waiting for the bad news, but it never came!

Matt and I have spent all day holding and loving on Jonah (thus no pictures). I've fed him all of his bottles since I've been here, and he's been very alert and content all day. It's so great to spend lots of undrugged time with him. All he had as far as pain medicine today (until right before his dressing change, of course) was Tylenol. And he seemed pain free. We've just had a great day - there's not really any news to report - THANK GOD!

Funny thing for today: Jonah peed on both Matt and I at one point or the other today. (I never truly appreciated the elastic in a diaper until we started cutting it all out). He peed on my right jean pocket, and unfortunately I had a $20 bill in there. I pity the vendor who crosses me. Don't mess with a pee-pee mommy scorned.

Shout-outs:
- Nurse Sheena for staying late last night so she could show the night nurse how to do Jonah's wraps and physical therapy.
- Nurse Sabrina for taking care of Jonah so well, working so hard on his dressing changes, being so patient with his eating, and washing his hair (along with Sheena!). It's so easy to go to sleep at night when I know Sabrina's taking care of him.
- Nurse Stacey for loving Jonah so much and letting me hold him and take care of him ALL day, talking to me, and being my friend, not just our nurse. Wanna move in?
- Dr. Wade whose last day on this service was yesterday. We'll miss you.
- Sarah, my sister, for bringing me Chick-fil-A sweet tea... mmmm.

Please, please continue praying for Jonah -
- that he will continue to eat. I feel like we're turning a corner!
- that the Ativan will continue to work and that he can be relatively pain free during his dressing changes.
- that he will continue to resist infection
- and for his diagnosis that we should receive by Wednesday of this week (we hope).

Thank you so much for your love and for continuing to lift us up. I really feel like Jonah is improving because of all your prayers. His mercies are new every morning!

Psalm 44: 8 - In God we make our boast all day long, and we will praise your name forever.

clean hair and cool wraps

Told you guys it was blonde. Mommy pride.

jonah - friday, march 13th

Jonah has had a pretty good day today - and by that I mean we didn't have to make any big, hard decisions, he only took his feeding tube out 3 times, and only ripped his bandages off his hands once.

But we both had big, long holding Jonah turns, and he's eaten a little better. He's taken about half his bottles today, which is better than the 10-15 cc's he has been taking. We've tried the Haberman (Jonah's not a fan), a regular nipple (too fast), a slow flow (has to suck too hard) and a preemie nipple. He takes the first part ravenously with any of those, and then gets really frustrated or pained or something and goes nuts - that or he falls asleep. They've started him on Carafate in hopes that it will help a little more than the Magic Mouthwash we've been trying. They are back doing his dressing changes right now. He's had some morphine and some Ativan. I'm not sure how he's doing now, but he seemed pretty peaceful after his last bottle right before we came out to the waiting room.

We attempted to secure the NG tube with Mepitac, then Mepi-something border, and we've got Mepiform on the way. Hopefully they can try again with the border stuff until the Mepiform arrives. I feel like we're trying every Mepi product on the market. I think everyone should go out and buy stock in Mepi-stuff and Aquaphor. I'll make you guys rich. :)

On Monday, Matt and I will probably begin doing Jonah's exercises and stretching during his dressing changes. The OT people have been doing them during the day, but aren't on at night. I'm a little scared about this, only because his hands, arms, legs, and feet are so raw, and I just know it hurts him to touch him there. I wish I could hide somewhere so he never has to associate my voice and smell with that kind of pain. Hopefully he'll only remember the good mommy stuff, and not the painful "for his own good" kind of stuff. Kids are so resilient though. I just have to make sure I give him WAY more snuggles than dressing changes. That won't be a problem.

Jonah is two weeks old today!

I know the paci may be causing some blisters, but what can you do when it's the only thing that will calm him down? We do slather it in Aquaphor, hoping to reduce the friction.

This picture says to me - "I'll just hold it myself. You guys are worthless."


They just came in and said that Jonah's dressing change went really, really well - the best yet! They said he only cried once when touching one of his arms, but this is so much better than the almost constant screaming he was doing before. Hopefully they've found the right combo of meds to make it bearable for him. Praise God for reducing Jonah's pain!

AND, they washed his hair - like, for real washed it - at the sink. They say it's even looking curly. I'm going to go check in on my baby love. I'll take more pics, but may not get them posted tonight. Thanks for continuing to pray for Jonah - small victories, but huge to us!

jonah update

So, more news...

The umbilical line (UAC) is out. It had slowly started coming out over the last day or so, and when they checked it today, it was precariously close to coming out on its own. (He's so greasy, it had just slowly worked its way out). Anyway, had it come out unexpectedly, he would have bled out of that artery a lot, so of course, they felt it better to go ahead and get it out. I'm SO glad it's out of there.

However (yes, my friends, there's always a however), this meant that he was getting no additional nourishment of any kind besides what he is nippling (which is still inconsistent). So... the feeding tube is back in, but secured a little more tightly with a really soft, thin tubing tied around his head. The hospital is in the process of ordering Mepitac (thanks for the suggestions) to secure it better, and thanks in advance for sending us some if you are. I know a lot of you have offered to send samples, and I greatly appreciate any EB product that might be beneficial to Jonah... at least til I figure out WHAT in the world I'm doing. I'm also going to have lots of questions about at home care once the time comes. And the time WILL come.

Jonah just finished eating 25 cc's and ate 20 at an earlier feeding. I think we may try the Dr. Brown's bottles, but we're also using a squeeze type bottle now (that plastics brought up for us to try), so he doesn't have to suck so hard. He knows how, but after he drinks the first 10 or so cc's, he seems to kind of give up - it could be because it hurts his mouth.

I feel pretty good about today overall, and I can't tell you how great it is to have my Matt back.

Okay, I have a request. And I hope you take it in love, because that is how I mean it. Please do not call me at the NICU if you are not family or personal friends. I have so much going on, am stressed out most of the time, and any time I have to spend on the phone is time away from Jonah. Plus, it makes the nurses have to be my PR reps, and I just feel really bad about that.

Also, if you have an issue with the way the doctors are choosing to treat Jonah, please leave a comment here, and do not call them (or me) at the hospital. There are MANY other babies here at the NICU besides Jonah, and I want the doctors to spend their time treating their patients, not having to deal with the repercussions of my blog. I mention them by name here in order to thank them for how awesome they are and so that you can pray for them by name. I just don't want them having to field extra phone calls and messages because of this. Do not get me wrong, they have not complained, but I feel responsible and guilty when I'm causing them extra time and effort - believe me, Jonah takes PLENTY of their time as it is. I appreciate SO much your willingness to help and be an advocate for Jonah. We need all the help we can get. I can't believe how much you guys care for and love him. It blows my mind everyday. But, please, leave a suggestion here, and I'll be sure to pass it along. My sister-in-law, Amy, is going through all the EB comments and compiling all of the EB medical suggestions and resources into one document. I read all your comments, and we are taking them to heart. Everything that I've taken to the doctors from you has been considered. They are in touch with Dr. Fine at Vanderbilt as well as the DebRA folks, and I trust them. Some suggestions don't fit Jonah's case. Others are a perfect solution. Jonah is in great hands.

Please know how much Matt and I love and appreciate you. You have been amazing in your love, prayers, and encouragement. I could not do it without you. Thank you EB peeps for helping me. I'm so honored to be part of such a caring and accepting community. PLEASE, PLEASE keep giving me your suggestions and sharing your knowledge. It's been so GREAT. I know how much I need you now and how much I'll need you in the future. You guys are awesome. I hope you know I want to hear from you... but it's just too much on my shoulders to get phone calls during the day - when I'm by myself - with such heavy and confusing information. Emotionally, I just can't handle it. I hope all that makes sense.

Thanks so much for your love and continued prayers.
Patrice

jonah - thursday, march 12th

Jonah took his whole 8:00 bottle today, but only took 12 cc's of 50 of his 11:00. We skipped the 2:00 because he is still so sedated from his dressing changes. I attempted breast feeding this morning (sorry, boys for TMI), and he was semi-interested, but being all greased up from aquaphor made it hard to latch on. We will press onward!


The PICC line attempt did not work last night. I had prayed over Jonah before leaving and cried out to God all the way home that if it was not a good thing, it wouldn't work out. And it didn't work out. I felt really nervous about it, and all I kept thinking was, "Trust your instincts." Last night was probably the most scared I've been since those first couple days when we didn't know what was going on. The neonatologists think the umbilical line will be okay for a while longer (they can have them for up to 30 days), but pediatric surgery is wanting to put in a broviac - a central line in his chest. For this, he would have to be completely sedated, paralyzed and intubated. To me, this is a last resort, and I've said no to it until the neonatologists get to the point where they think it's necessary too. I feel like we're just on the verge of him consistently eating - I just want to give it a couple more days if possible.

The biggest development today is that they want to begin doing Jonah's dressing changes in the evenings - around 7 or 8 pm. They hope that, in doing this, he can be sedated more over night and more alert during the day, so that he can eat. I'm pretty excited about that idea as it should make his feeding go well and will give me more eye snuggle time during the day. Part of doing it during the day is that the occupational therapist comes and works with him, doing exercises for his hands and feet to keep them functional. He's starting to pull in his thumbs a little from being bandaged all the time, and he's starting to keep his feet pulled up a certain way. When they start doing the changes at night, I'll probably be taking over the OT's role, since they are not on call 24 hours like the others.

Today's shout-out:

- To beautiful, wonderful, diligent Dr. Heather Furlong for agreeing to be Jonah's primary doctor. (Being at a teaching hospital, the doctors rotate every two weeks, and I was feeling uneasy about the turnover). I trust her completely, love the way she seeks out answers, takes suggestions, but makes her own final decisions based on HER instincts. I'm so glad to have her on Jonah's case. I feel a huge weight lifted off my own shoulders, knowing that there will be an ultimate somebody that can make a final decision when I can't. I have just felt pulled in different directions, getting different advice from a lot of different places - I just need a constant. Thanks, Dr. Heather for being our constant here at the hospital. Jonah, Matt, and I LOVE you.

Please continue to pray that Jonah will eat. We are only days away from a broviac or g-tube or something more invasive if he doesn't start consistently eating on his own. Plus, there are some risks with the umbilical line, so we need to get that thing out as soon as possible.

Pray for wisdom and discernment for the doctors, and that God will heal Jonah through their hands and modern medicine.

Pray for peace for me and Matt. Matt is coming out after work today (only to the waiting room) to be with me and will be staying at home from here on out. He's not 100%, but these last couple days have been way too heavy for me to bear without him. Please pray that I will resist getting whatever he has, and thank you for praying for his health - he's feeling better!

prayer request

After Jonah's dressing changes, Gerry and I went back there to see him. All of a sudden milk started coming out his nose and mouth, and he began choking. We called for help but all of the nurses were busy at the time. I had to yank Jonah up and lean him forward to keep him from choking, and finally someone came to suction his nose and mouth. He had pulled his tube out again, up into his throat, and it was choking him.

I told them not to put the tube back in unless they could figure out a way to secure it. How can I go home and sleep if I know the same thing could happen again?

Later on tonight, they will be putting in another PICC line - this time in his neck. They will suture in to try to secure it better. As you can imagine, this is very hard on me - thinking of Jonah having to be sedated, messed with (yet again), and then having a PICC line in his neck. With how strong he is and how much he thrashes around, I'm just so afraid that he will rip it out too, stitches and all. I HATE the idea of having something in his neck like that. It makes me feel literally sick to my stomach. I'm just waiting on a call from Matt to talk to him about it, so we can make the final decision. I had asked them to wait to see if he would eat at his 8pm and 11pm feedings, but at eight, he only ate 21 cc's. He needs the PICC line for added nutrition (back to the Hyporal), pain meds, and antibiotics (should he need them again). Along with it, though, comes a higher risk of infection. I know it's necessary until they can find a solution for the eating and pain issues, but I just hate the idea of it, plain and simple.

Another reason for the PICC is that right now they are giving him things through his umbilical line (pain meds, antibiotics, sugar water), and with that, there is a big risk that he could get blood clots in his toes. With the PICC, they would just be able to use the umbilical line for blood draws and to monitor his blood pressure and heart rate.

Please be in prayer for Jonah tonight as he gets his PICC line. Terrified is what I feel more than anything, and I'm just so tired. It's so hard to make these decisions when everything seems to have so many risks.

I need to learn to be his advocate without feeling like I have to be in control - that it's all on my shoulders.

Please pray that all of Jonah's issues will begin to resolve, starting with nutrition. He can't get better (or even close to going home) without eating. If we could get him eating, he would be able to get rid of a lot of the lines, and they wouldn't have to put the feeding tube back in(which will probably be put back in tomorrow if things continue as they are).

Thank you for praying for Jonah. He is one brave, strong little boy. His mommy, on the other hand, is feeling very helpless and weak.

jonah - wednesday, march 11th

Jonah had another rough morning. From about 10:30 to 11:30, he was screaming, thrashing around, and extremely agitated. I think it was a combination of irritation that he was being messed with, pain (they had to redress his left hand because it had come undone), and hunger. Anyway, I finally decided to hold him to feed him his bottle and to try and get him settled. While I was trying to calm him (to no avail), he ripped his bandage off his left arm and hand again - completely off. The nurse had stepped away for a moment to warm up his bottle, so I sat there crying, trying to hold his little arm to keep him from ripping more skin off his hand and keep him from causing damage to his face. I was crying, he was screaming and flailing - it was terrible. The nurse then ran to grab someone to help, and they were able to get him bandaged back up. His little hands are so sad. It literally looks like he stuck them in a fire and left them there. I have no idea how many more blisters I caused because of having to hold him like that, but I didn't really know what else to do. I felt so helpless.

On a very bright note, Grandaddy Gerry (Matt's dad) randomly showed up today. It was a great surprise, but when I came up to the desk to go in, they said, "One of the grandpas just went back to see him." WHAT??? To my knowledge NEITHER of the grandfathers were in town today. Who did they just let back there with my baby? Anyway, it was Gerry for a surprise visit, so no worries. He came to save the day. Matt is most definitely sick. He went to the doctor yesterday, and he has something viral and contagious. He stayed with his grandaddy last night, so I wouldn't get his germs. I told him he gets one more night to get over it, and then he's coming home regardless. I'll just steal some masks from the hospital or something. He's so sad to not get to see Jonah, and I'm so sad not to get to be with him. I don't feel alone. I have plenty of people who would come at the drop of a hat, but they're not Matt. I miss him terribly. His heart is breaking at having to be away.

After Jonah's freak out attack, he still only ate 15 cc's. We're still having major pain management and eating issues (the first having to do a lot with the second), and he pulled out his feeding tube yet again. Today makes the fourth time they've put it back in. I know he needs it, but they can secure it to his face, so he keeps getting mad and agitated and pulling it out. I hope the in and out is not causing damage, but who really knows what's going on in there?

They've tried methodone, morphine, and today oxycodone to try and control his pain. I'm not sure how today has gone - he's getting his bandages changed now.

Please pray...

- that Jonah's pain will be managed with the least amount of narcotic possible

- that he will eat and in the meantime, that he will not pull out the tube

- that he will continue to resist infection

- for Matt, that he will be healthy again (can we start with a smaller version miraculous healing?)

Here are some pictures from the last couple days.

After yet another hair wash attempt.This time I definitely had more success, and I must admit, I DIG the mohawk. (His hair is blonde... don't let the aquaphor deceive you.)

Grandaddy gets to hold Jonah for the first time. Nana and Granny are going to be so jealous.

Today's shout-out:

To the Deacon Basketball Friends for the great card and thoughtful gift. I don't know who you are or how to thank you, but it meant so much to us. GO DEACS!

jonah - tuesday, march 10th

Jonah has had a rough morning this morning. He was real agitated and upset for most of the morning. He kept pooping his diaper, and it hurts him when we change it, so that kept him pretty upset. It breaks my heart to hear him cry like he does… It’s definitely an “I’m in pain” cry.

At his 8:00 feeding, he took 42 of 50 cc’s. It took me an hour to feed him with several diaper changes and interruptions in between. He was very awake and alert…but very upset most of the time. One of those interruptions was him pulling his feeding tube out. They had to put it back in. It's the second time it's been pulled out, and the third time he's had it put in. What is it doing to his little esophagus???

Some more Duoderm adhesive got put on his face again the other night when fixing his tube. He now has a big sign on his bed: NO tape, NO Duoderm, NO Tegaderm, NO adhesive AT ALL! There's only one little piece left (one big piece came off on its own today, leaving a big red raw spot on his cheek), and we're waiting on some special adhesive remover (Thanks, Janel) to arrive in the mail. I may start applying some warm water and baby oil to it (per Janel's suggestion) in the mean time to soften it up.

Nothing really new to report from rounds. They are trying to get his pain meds worked out now that they have to give them orally (since he pulled out his PICC line). So far (yesterday and today), he's been in a lot of pain during his dressing changes. It's hard finding the right combination of oral drugs to give him so he doesn't hurt, without knocking him completely out where he won't eat for 12 hours. We've put in a call to Geri with DebRA for suggestions. Holla at your girl, Geri! :) I really don't want that PICC line to have to go back in. Jonah is so strong and thrashes around so much, that I know it's hard on his skin, and they have a hard time bandaging that arm and hand because of it. His right arm and hand and his left knee are still in really bad shape. If you could see what's under those bandages, it would break your heart. It breaks mine. He's still developing new blisters everyday. He always seems to have some new ones on his arms and today, he has two really big raw spots on his belly from rubbing his bandaged arms and legs against his skin. I wish there was some kind of shirt we could put on him that would protect his belly from his arms and legs without the shirt itself causing blisters. With new blisters and lesions constantly popping up, I don't know at what point you are considered "healed" enough to go home or "safe" from getting an infection. It doesn't seem you are really EVER safe or healed from this. I avoid doing research about the different types, for fear that I'll choose the worst one and focus on it. I just focus on the caring for him research until we have a diagnosis. There's such a wide spectrum as far as severity. I don't mind the work it will take. I don't mind that our whole life has changed. Everything is worth it for my Jonah. I just want him to be able to come home. I want him to live a long, long life. I don't want to have to say goodbye to another child.

I'm so busy here. I hang out with Jonah back in the NICU the majority of the time. I have a nice window seat where I can always be by his side. Anything I can do, the nurses let me do, so my life is a lot of aquaphoring (yes, I just verbed that), diaper changing, bottle feeding, pumping, paci holding (that boy loves him some paci), head rubbing, holding, and loving. It's basically what I'd be doing with him if we were at home, but a much more complicated version that requires eight hands instead of two. Although I've loved having lots of visitors, it's actually getting to the point now that I find I leave them waiting in the waiting room for long periods of time while I go mommy my baby. I guess that's the way it should be though. So anyway, if you plan on visiting, it may be good to get in touch with me first so we can work out a good time where I can actually visit with you during reporting times (shift changes) or dressing changes. Keep the comments, voicemails, emails, prayers, and love coming though. I still have time for ALL of that.

Specific prayer requests:
- that they will figure out the best way to manage his pain orally without the use of a PICC line
- that the meds will not knock him out so that he won't eat
- that he will improve on eating so we can get that feeding tube out
- that Jonah will be healed (or at least he'll have the form that is mild and will let him live a long, full life)
- for Matt who thinks he's getting sick. We both need him here with us.

Thanks so much for your love, prayers and kind words. They help sustain us.

I'll try to post a couple pics later on.

Going back to see him now... my favorite.

prayer request

I just got off the phone with Matt, and he has a sore throat... thinks he's getting sick. Please pray that this is NOT the case. If he's sick, he can't be with Jonah and really can't be with me either, and we both need him very much right now.

Prayer warriors unite. I don't know how I'll do it without him.

jonah - monday, march 9th

Jonah had several changes over night.

His TP tube is now an NG tube (going only to his stomach, not his upper intestine) after it slipped out last night. They seem to think this is no problem, and replaced the tube today with a smaller, softer one.

His PICC line is out now. This was Jonah's decision, not the doctor's. Dr. Furlong had wanted to get it so that his right arm and hand would heal better and they could wrap it easier. However, she wanted to try him on oral pain meds for a couple days before removing it. He had other ideas. They started him on a different pain medication today (methadone), which they gave him orally. He was in a lot of pain today as they did his dressings, but hope to give him the methadone earlier, so that it will have more time to kick in before they have to do change his bandages.

His WBC count is 11.8, which is good. :)

His blood culture is still negative after four days, which is very good. :)

They have begun to turn off his feeding tube an hour before bottle time, in hopes that he will feel hungry and hopefully eat better. It worked for his 11:00 feeding. He was actually crying for it. He ate 25 of the 50 cc's in the bottle. It was encouraging. We have only attempted one bottle feeding since then, due to his hangover, but he wasn't interested at all. I'm about to go attempt another feeding here in a minute, so hopefully that will go better. Gradually the idea will be to only feed him by tube once every three hours (instead of constantly over 2 hours) in hopes that he'll get hungry and take the bottle before the tube feeding. And then, hopefully NO TUBE. It will be a slow process, but I'm looking forward to trying these changes.

Here are some pics from the last couple days.

A hat we fashioned out of burn netting. Jonah was cold.

Attempting to wash Jonah's hair. This is what happens when I tell Matt to take a picture of me washing baby's hair, and he doesn't know how to use the zoom out function on the camera.

Jonah and his new hair-do. As one of the commenters said, "Embrace the mohawk." He's one greasy little boy, and I LOVE him.

Matt attempting a bottle feeding with his only good hand, which unfortunately, happens to be his left one.

jonah - sunday, march 8th

This will be a short post.

Jonah is holding steady today with no real changes. I did attempt to wash his hair, but it's so greased up with aquaphor, it's still pretty nappy. He hasn't been washed or bathed, besides diaper changes. The motherly instinct kicked in, and I just had to attack his head a little bit (very gently, of course).

I'm having kind of a hard (sad and tired) day, and just don't feel like I have the energy to do a long post. I'll get more sleep tonight, will hopefully feel better tomorrow, and I'll try to post again then.

Just didn't want you guys to worry about him. We haven't gotten to hold him today, which may be part of the reason I'm down, but I hope to before we go home. As much as I need it, he needs it about 10 times more.

Please keep praying for Jonah. The nurses who are seeing him now after a week are just astounded at how great he looks. It excites me to hear that, but I still know we have a VERY long road ahead of us.

Matt goes back to work tomorrow, and we are both (more me than him, probably) are dreading it. Please be in prayer for us, as he has to return to the "real world," and I carry on here at the hospital. I know I'll be busy and will probably have some visitors, but I also know it will be hard to be here without him.

"See" you guys tomorrow.
Patrice

jonah - saturday, march 7th

Today has been a VERY busy day.

It first started with rounds where we discovered that Jonah's WBC count is back up to normal, and soon he may be able to be in an open-air bed. His stats are looking really good, and we've increased his feeds to 20 cc's per feeding, and he's getting 4-5 cc's in his feeding tube per hour.

Then I got a surprise visit from Megan (one of my great blog-readers) as well as some of our friends from Greenville who came here to pray for Jonah IN PERSON. We had lots of other visitors today, but I've totally lost count. :)

Then we had a birthday party on the 12th floor open terrace for Shaina's birthday. Ainsley's birthday is tomorrow, so we were supposed to have a party for both of them, but Peyton is sick, so decided it better not to come. I hope to see the kiddos soon, because I miss them desperately. Hopefully everyone will feel back up to 100% by next week. I need some Asher and Ainsley snuggles in a bad way.

Beautiful Shaina...

Matt and I went in to watch the doctors change Jonah's bandages today. It was not as heart-breaking as I thought it might be, but he was on about 3 shots of morphine, so he wasn't in nearly as much pain as he would have been otherwise. I'm glad the first time is over with.

Check out Jonah's new bedding.

We thought this might keep him from thrashing around so much and causing so many new blisters. I guess it's the closest thing we can get to swaddling - he just seems like he wants to be wrapped up tight... which leads me to the biggest part of the day (and why we've been sooooo busy)...

Please continue praying for Jonah's eating. In the last day or so, it seems he's completely forgotten how. I worked and worked with him to get him to eat his 8:00 bottle, and maybe he took half... and that was only after doing the bait and switch with his paci. I'm trying to be positive, but I have to admit this is completely frustrating. I just want to get that tube out!!!

But hey, overall it's been a very positive day, and I couldn't be happier about his WBC count. He'll continue to be on his antibiotics until the 7 day cycle is over (today was day 3), just in case. But we should be able to hold him regularly now as long as nothing changes. It was great healing for Matt and I to be able to hold him today, and I hope it was for Jonah too. Everybody needs a little lovin' from time to time. :)

Today's shout-outs:

- Dr. Furlong and Tonya for doing such an awesome job on Jonah's dressings. I am so amazed at the skill and patience it takes to do this. It took them almost 3 hours. I can't imagine being skilled enough to do it at home, but I'm sure by the time we bust this joint, Matt and I will both be pros.

- Dr. Tony who was so great at soothing and loving on Jonah during his dressing changes - was so patient and kind and kept Jonah relatively calm through the whole process. Without his soothing Jonah, Jonah and I would both have been complete wrecks, probably me more than him. I'm not nearly as tough as he is.

Thank you for continuing to pray. We still have a very long road ahead of us, and it just seems likes it's 3 steps forward, 2 steps back a lot of the time. But hey, we still net 1 step forward, right?

jonah's media debut

Jonah's article is now online: Click HERE to read it.

We know this article is about you guys more than us, and although it's making Jonah famous, ultimately we hope to help make Jesus famous.

I've been very worried (motherly instinct or just psycho-mom?) about Jonah since early evening. He was sleeping A LOT but hadn't had morphine since mid-day when they did his dressing changes. He refused his last 2 to 3 bottles (wouldn't even open his eyes or acknowledge them in his mouth), and was just so lethargic, it scared me.

We just called a few minutes ago though, and he was crying for it at 2:30, and took the whole 15 cc's. I'm having a hard time being at home tonight (as you can see by the fact that I'm up writing this at 3:15 am), and I'm still feeling pretty uneasy. I don't like it when Jonah is so completely out of it. And any time he has a temp change, they just alter his bed temp. When do we know it's really a temperature change in Jonah? I'm just so scared of an infection, I can barely breathe sometimes. I feel like I'm somewhere between staying in bed for four days straight and being beside him 24/7. I know so many of you can relate.

If you're up right now, please say a special prayer for Jonah, that this feeling I have is just paranoia and nothing more... and if you could ask for a special helping of peace for Matt and me, that would be great too.

And don't forget to check out our little man in the paper!

jonah - friday, march 6th

Hi friends!

Before talking about Jonah, I just want to give today's shout-out to SHAINA! She turns 14 years old today! She said she's holding her second time to see Jonah (she only gets to go in twice a week for 10 minutes) until this afternoon when she gets out of school. She wanted to be able to see him on her birthday. They can celebrate BOTH their birthdays together! Jonah is one week old today (as if you didn't know).

Today has been a good report day for the most part. Jonah is eating 15 cc's regularly by bottle now about every 3 hours depending on how drugged he is at the time. He's so eager for it and sucking it down like a champ. I really think he'd eat more if they let him, but it's better to take it slow, and gradually increase the amount. My goal for him (and this is in my head not from their lips) is that he have it out within the next week. I'm so proud of him. I've missed a couple feedings due to the timing of his dressing changes, shift changes etc, but I'm hoping to be able to do the rest of them myself from now til the time we go home. It's really the only bonding time I get with him, so I'd really like to do it myself when I can. I can't wait til Matt can do it too, but with his broken wrist, it would be pretty difficult for him... plus, his cast is not exactly sterile.

He just finished his dressing change about an hour ago. Dr. Furlong said he was in a pretty good amount of pain. It makes me so sad to know that he's hurting, and that there's nothing I can do to comfort him. The whole process takes them 2 or 2 1/2 hours. They are constantly tweaking his amount of morphine and when to give it to him for it to be most effective. We'll need to start going back there and watching them do it probably this weekend or next week, but there's a video on the Stanford website they want me to watch first to prepare myself. I think the doctors and nurses even have a hard time seeing him that way, and they've seen some pretty bad stuff. It will be rough. I am not looking forward to it.

He is gaining weight and eating more. Those are both GREAT things. We're trying to focus on the positives. They haven't checked his WBC count in a while but will order a CBC tomorrow, so hopefully we'll find out where he stands as far as an infection. He did have a blood culture done. So far, it is negative, but I think they watch it over several days. Please, God, no infection.

A couple logistical things:

We now have a PO Box for those of you who have been asking for a mailing address:

Matt Williams

PO Box 11455

Winston-Salem, NC 27116

We have to use Matt's name for all mail, because Jonah was unable to produce 2 valid forms of identification or a signature. That is next week's goal.

Also, they are planning on running Jonah's story on the FRONT page of the Winston-Salem Journal tomorrow. Front page, people, and I didn't even get the chance to fat-face approve the photos. This could be bad. The website is journalnow.com. They said it would run tomorrow unless it snows. It is currently 70 degrees here. I think we're good.

The newest task: burping Jonah.

I would love to get some advice from you EB peeps out there on the best process for this.

Thanks so much for continuing to love on, care about, and pray for Jonah. God continues to answer our prayers.

Luke 18:1-5

One day Jesus told his disciples a story to show that they should always pray and never give up. “There was a judge in a certain city,” he said, “who neither feared God nor cared about people. A widow of that city came to him repeatedly, saying, ‘Give me justice in this dispute with my enemy.’ The judge ignored her for a while, but finally he said to himself, ‘I don’t fear God or care about people, but this woman is driving me crazy. I’m going to see that she gets justice, because she is wearing me out with her constant requests!’”

I'm not afraid to drive God crazy with my constant requests. How about you?

Decorating Jonah's bed with pictures of us and Deac. (We taped them to the top).

10 cc's down, 20 more to go

Just wanted to end the day off with some good news since I've been kind of a bummer today.

Right before we left the hospital for the night, we got to spend some great open eyes time with Jonah. It was the first time today he'd really been awake because of all his procedures he had this morning. He was very drugged and maybe not feeling so well.

And guess what? I fed him a bottle! And he took it, for real. 10 cc's, all in his mouth, all swallowed. He was really sucking! It was so exciting. I'm so glad to see that the feeding tube doesn't seem to be bothering him. Hopefully he'll keep this up and he won't have to have it in very long. Thank you so much for your very specific prayers. We know that this is not a coincidence, but a direct answer to all those petitions going up on Jonah's behalf. We're so thankful to have you on this journey with us. Praise God!

I asked Matt to please stay with him until he fell asleep (I had to go pump), and lucky daddy got 25 more glorious minutes gazing into the eyes of our beautiful son. What a blessing they BOTH are in my life!

Sorry these pictures are starting to all look the same. I just can't stop taking them.

Dinner...

Dessert ...

jonah - thursday, march 5th

Jonah is looking great! We just went back, and he's actually almost smiling.


His white blood cell count is still low, lower than yesterday. That's disconcerting to say the least, but hopefully his added nutrition will help him heal more and resist infection. They talked to us about possibly getting to hold him soon, but Dr. Furlong says she'd like to see his WBC count going up before we hold him. We are TOTALLY okay with that. There's no way I'd hold him if it meant we might be risking infection. It's funny, but after missing out on so much after we lost Gabe, I'm thankful for every wiggle, squeek, or facial expression. For now, that's so much more than enough. We don't take a single bit of it for granted. Don't get me wrong though - as soon as they say we can hold him, people better get out of the way. I won't be responsible for my actions.


He's had a rough day so far, but it hasn't seemed to phase him too much. He started the day getting his TP tube in followed by a biopsy, followed by a dressing change. Redoing all the bandages really takes a long time. I felt bad that he had to go through so much, but really he just seems drugged and content more than anything else. We haven't tried another bottle yet since he was having all that done and has been kind of out of it ever since. I'm anxious to try again since he's done pretty well the last two times.


Specific prayer requests right now:
- that he will eat, eat, eat on his own so we can get that nasty tube outta there
- that the tube will ONLY help, and not hurt
- that his WBC count will go up and he will resist whatever infection is trying to get him
- that his pain management and dressing changes will continue to go well and that he'll continue to be strong


The photographer from the Journal was just here. When the he asked Dr. Furlong how Jonah was doing, she simply responded, "He's still very sick." It made me so sad. She is telling the truth - he still is very, very sick... deep in the woods. Sometimes I get it in my head that it's just some blisters on his skin. How I wish that were true. Although we remain hopeful, sometimes the reality of what's going on really slaps us in the face. I just feel like I can't bury another child. I don't care what kind of care he needs, how much it costs, or how hard it is. We just want him to live for a long, long, long time. We want to see his kids have kids.


Lord, let Jonah live so that he may praise you.

pictures of jonah - thursday, march 5th

Pediatric Surgery will come back and do some creative problem-solving to secure the tube, but for now it's in his Rambo strap. Doesn't he look tough???

rambo and his TP tube

Well, things they are a changin'.


We came in so excited about Jonah eating last night. And he tried again this morning, and had eaten 5 or 6 of 10 cc's. They've now increased the amount he should have. We were so pumped walking in to see him, and lo and behold if they're not, as we speak, putting in a TP tube. It will run from his nose, down his esophagus, through his stomach, and just to his intestine. The nurse just came in and said it's in place and he did really well.


I have mixed feelings about it. I know he needs nourishment and quick, but it was just a shock this morning since he had started eating more. But Dr. Furlong had talked with Dr. Fine, and he said it would be okay, that he had done it on EB babies, as long as it is a short-term solution. The positive is that Jonah will get the nourishment he needs, will be able to heal and resist infection better, and he can still bottle feed. If he starts really picking up with the bottle feeding, we'll be able to take the tube out. I just hope they've found a great, tape-free way to attach it where he can't pull it out.


They've ordered him a special pulse-ox to go on his forehead. This morning he's looking very much like Rambo with a soft strap around his forehead trying to hold on his current pulse-ox. It's not really working, but he looks totally adorable.


I'm going to go check on him right now, see how the tube looks, and try to bottle feed him again.


Please pray that all will be well with the tube, that Jonah will continue to eat more and more, and that they can take it out very soon. I'm sure if this tube doesn't work and he doesn't start eating more, we'll be looking at a tube that will go directly into his stomach. This would be a more invasive surgery.


Sorry to bum you guys out. I'm slightly bummed myself. I'll get some pictures when I go in there.

can i get a woo woo?

Patrice, why on earth are you up writing a post at 4 am?

Why, you ask?

Because we just called the hospital to check on Jonah during my early morning pumping session and the nurse - beautiful, wonderful, heroic, ever-striving-forward Sabrina - reported to us that Jonah ate like a champ his last feeding. She estimates that he took AND SWALLOWED about 4 of the 5 cc's that she gave him tonight. One suck was so loud, she heard it outside of his isolette. Wow! God continues to answer very specific prayers, doesn't He? Are we surprised??? (that was rehtorrical of course)

... could be the Zantac.
... could be he's figured it out.
... could be just a one time thing.
... could be my Awesome Savior, Jesus Christ of Nazareth.

I choose number four. Yes, that's my final answer.

Thank you sweet Jesus for this small huge victory in little Jonah's life. You continue to give him so much strength and will to survive. Maybe it's only a one time thing. Maybe it's a breakthrough. Either way, it's great news for one happy, happy set of parents. Thank you for your grace and your sweet mercies. They are new EVERY morning, even at 4 am.

Praise be to Yaweh Jireh - MY God, HE provides.

Now I just have to get myself wound down and back asleep. No more thinking about Jonah. No more thinking about Jonah. No more thinking about Jonah...

... nah.

Come, let's shout praises to God, raise the roof for the Rock who saved us! - Psalm 95:1
(This is the Message version of this verse. I've always kind of made fun of the way they put it in this version, but right now, it seems just about perfect!)

Goodnight, I hope. Thank you for praying for Jonah.

jonah - wednesday, march 4th

SO much to report today... so little time.

The ENT will only be coming if Jonah shows signs of respiratory problems. I guess he feels that if Jonah's breathing is good and he's showing no signs of respiratory constriction, he'd rather not perform anymore procedures on him than are necessary.

They did start him on Zantac per my (your) suggestions... just in case he is having some acid reflux problems and his throat is in pain.

They told me today that they were going to put in a Transpyloric tube (that would run from his nose into his lower stomach), but as they were saying this, the attending doctor came in, who had just spoken with the EB specialist at Vanderbilt (Dr. Fine) who said they should NOT do that. My guess is that he'll end up with a G-tube before it's all over. And per many of you, that's not necessarily a bad thing. I was just hoping Jonah would get to stay out of the OR.

They've started a PICC line in his arm (that they've secured somehow without tape) so Jonah can get more nutrients. They are really getting concerned about his nutrients, and this will help a lot until he can get whatever feeding tube they decide on. They are putting hyporel in his tube which should give him a lot more of what he needs.

The bad news today is that Jonah's white blood cell count is down. For adults, when we get sick, our levels go up, but for a baby the count goes down. This could indicate that he's getting an infection. They've started him back on antibiotics. They also took another blood culture today (I'm assuming we'll know the results of that tomorrow), and he's been put under "neutropenic precautions" (gloves, gowns, masks). Please, God, no infection.

They have stopped the humidity in his bed. Apparently his temperature has become stable on his own. I'm thankful for this, since the humidity leads to more skin breakdown.

On the dermatology front, they will have to do additional biopsies on Jonah. They were hoping to be able to use the same tissue from his first biopsy, but there are special liquids they have to be kept in for the kind of tests they need to do, so those are being overnighted here tonight. One sample will be sent to Houston for a certain type of test and the other to Buffalo. We won't know a specific diagnosis or prognosis for two weeks. Please, God, patience.

We were interviewed at 2:00 by the Winston-Salem journal for an article about Jonah, EB, and the social networking aspect of all this - the blog blowing up like it has and his facebook prayer group which now has over 2,000 prayer warriors. I don' t even know 2,000 people.

Sorry it has taken me so long to post - today has been an insane day! We've gotten so much information, but it has been busy and a little overwhelming to say the least.

Please pray for Jonah.
- that he won't have an infection or that if he does, that he reacts well to the antibiotics and will be restored quickly.
- that the PICC line will provide the nutrients he needs until the final decision is made about the feeding tube, and that it will not do too much damage to his little arm
- and that he will handle the biopsies well tomorrow

He's so strong, but I wonder sometimes how much one little body can take.

Today's shout-outs:

- Deac, our dog, who finally pooped after several days of constipation (Grandaddy - our Deac-sitter was so worried). Who knew canned pumpkin would do the trick?

- Dr. Ali (our WONDERFUL dermatologist) who is going way out of her way to contact specialists in Vanderbilt and Chapel Hill, pay special attention to our sweet Jonah, has to leave tomorrow afternoon for a dermatology conference but gave me her cell phone number and told me to call ANY time this weekend if I had any questions. "Really, ANY time. And please, call me by my first name." (Insert big hug here)

- Dr. Furlong (our WONDERFUL neonatologist) who is so gracious, humble and kind; who listens to all my (your) recommendations and suggestions; who instituted mepilex bandages, the Haberman nipple, and Zantac per your comments. What a blessing to have such a great doctor who is most concerned with Jonah's well-being and that he gets the greatest care and has no ego about it whatsoever. She even spent lots of time with the Journal interviewer today and us, explaining (once again) his disorder and his treatment to her. All the doctors here are so great. Jonah's in great hands.

Thank you for your continued love and support. I love reading your comments and prayers for Jonah. Please don't expect much of a post until the evening. Life is so crazy around here. But hey, for you Pacific coasters, I'm right on time!

sweet dreams

Love,

Jonah

jonah - tuesday, march 3

Good morning (afternoon, night... what's going on?) friends.

WE HAVE BELLY PEOPLE! I was so pleasantly surprised after his dressing change to see exposed belly, and it looked so beautiful! I know that's just a small victory - a today victory, but I'll take it! If we wake up tomorrow and he has blister there, I will be so sad, but I'm so happy in this moment - it has made my day. I was literally dancing.

I was here by myself for about an hour this morning, and Jonah was the most wide awake I've ever seen him. He focused on me so hard, and I felt like he really knew it was me. We had some great one-on-one time (I cried through most of it), and I was thankful for his alertness. I hadn't taken the camera back with me though, so I missed out on some great pictures.

He is now wearing the pulse-Ox monitor on his upper left arm. He doesn't have a lesion there and they put ointment on first and bandages over it, so it won't stick. Hopefully it won't cause any further damage, but even if it causes a blister, it still makes me feel better to be monitoring his oxygen.

He's still not eating. He definitely seems interested, but he just won't swallow. I don't know if he doesn't want to or can't, but it's extremely frustrating. If the ENT doesn't get up here soon to check him out, I'm going after him/her myself. The speech and occupational therapists came today and say his tongue and mouth reflexes look good, but they don't want to force too much with the swallowing or increase his feeds until we know what's going on in his throat. His head and face continue to look good (and EXTREMELY cute), so that gives me hope. He's so adorable. I fall more and more in love with him every second. Five minutes after we got home last night, I looked at the pictures of him that I took and that I posted, and was ohhing and ahhing about how precious they were. I told Matt that I missed him and wanted to go back. :) But I did get a full 6 hours of sleep, so it was good that I took a break.

Here are some more great ones -

Pulse-Ox anyone?

Aunt Shaina meets Jonah for the first time.

a couple more

More of Jonah. He is more swollen tonight (I'm sure you noticed), and this is because of the IV fluids he's receiving through his umbilical cord. At rounds they said his electrolyte levels look good, so I don't think the swelling is anything to worry about - the nature of the beast, I guess.

We just gave him another bottle, and I definitely felt like he took more, and he gave us 2 big sucks - that you could actually hear, they were so loud!

(But then after Matt went in for his goodnight visit, he told me Jonah had spit up a whole bunch... grrr.)

Prayer requests -

- that he will keep breathing nice and strong and that tomorrow we can remedy the pulse-ox situation

- that he will eat, eat, eat tonight and we can avoid the feeding tube

- that he will continue to resist infection - what a blessing that he is showing no signs!

- that he will do well tonight in the care of Christy (another AWESOME nurse) - we're all going home for a good night's sleep, but will be back first thing in the morning

- Peyton, Amy, Sarah, and the kids as they travel the icy roads back to Chapel Hill; they came all this way for just two hours with Jonah, and he rewarded them with some great eye snuggles.

- Kim who is flying back to NY tomorrow

(a little blurry, but too cute to resist)

jonah - monday, march 2nd

I refused to go home last night because of the rough night I had before and just had some pretty bad anxiety about leaving Jonah. Plus, it was supposed to snow, and I didn't want to get stuck away from him. We were offered a free hotel room and a couple different places to stay, closer by than our house, but I literally did not want to go farther than the waiting room. And then God gave us a sweet gift - a family suite back in the NICU opened up very unexpectedly, and we got to stay EVEN closer to Jonah than the waiting room.

Not much news to post today. It was frustrating this morning when it was quiet around here and I had so much time to post, but the internet was down. We just all sat around, not knowing what to do with ourselves. We tried this weird thing called talking. It's growing on me.

I did get to talk to the leader of the NC EB support group, and she was awesome! She did express some concerns to me (as many of you have) about some of the treatment choices for Jonah, but the doctors are so great when I pass along your suggestions. We so appreciate that you care for him and love him so much. I spoke with Dr. Wade at length last night about some of my concerns, and he took so much time listening to my concerns. He did look into the mepitel/mepilex bandages, and guess what? Jonah is now wrapped in triple antibiotic ointment and the new bandages. AND, he's agreed with me (you) that it would be good to only change his dressings once a day instead of twice, and that order is now in place too. AND we tried the Haberman nipple last feeding. Not any additional sucking on his part (and by that I mean that he was TOTALLY uninterested), but it did seem that maybe a little less dribbled his mouth. We're only giving him 5 cc's right now (until the GI doctor checks him out), so I figure he's getting very little to eat at all. Please continue to pray for this situation. I am willing to exhaust every possibility before we result to a feeding tube. I'm in the process of reading all your comments, and if you have EB experience, will pass them along to our doctors.

As far as the humidifier is concerned, we know this is not a great option for Jonah in that it could promote skin breakdown, but per a specialist doctor in Chapel Hill and Jonah's doctors here, we have to do this now to keep his body temperature up and prevent dehydration. Everything is a double-edged sword with his current condition. He is so fragile and so much of his body is raw and unprotected, his options are very limited. We rely on prayer and faith to fill in the gaps.

He still needs to be seen by the GI doctor, the ENT, the optholmologist (Wed), the pediatric surgeon, and the geneticist. Today was slow as far as consultations because of the snow. Many people didn't make it in to work. I'm hoping he'll see the GI doctor and the ENT tomorrow since this will affect his feeds the most.

The one thing that I'm really, really scared about is that with all the ointment and new bandages, there is NOWHERE on Jonah's body to put his pulse-ox monitor. They've tried so many things. I'm going to push this tomorrow at rounds, because I don't even feel like I can leave the waiting room without his oxygen being monitored. After Saturday's episode, I'm just not willing for this to go unmonitored. The nurses are doing a great job keeping an eye on him, but they can not be staring at his face or watching his coloring ALL the time. It's just not feasible.

My sisters want me to start doing daily shout-outs, so here goes:

- to Geri, the nurse educator from DEBRA for being so awesome and easing a lot of my fears

- to Stacey, Connie, and Brook, Jonah's nurses who are taking such great care of him, and feeling his pain just as much as we are

- to Susan who made the whole waiting room laugh out loud with her comment about Ambien making her "jump off a horse" into her bedside table and hurting her "bum."

Jonah being cute -

From Patrice's sister-in-law

The hospital internet is currently down so Patrice asked me to let you know Jonah remains stable. As soon as the internet is regained at the hospital, you'll get a more detailed account from Mommy, herself. I can tell you that we indeed got snow...even a bit more than what was predicted.

quick update

I just want you to know that we are working through all your comments, and we want to thank you so much for how much you care... just because. I also want to let you know that if you have experience with EB and are passing along suggestions to us (type of bandages, feeding suggestions etc), we are working hard to read and summarize the info and pass it along to the doctors. They are being very receptive to our suggestions. Don't panic! We are reading them - but with visitors, phone calls, pumping, feedings etc, it sure does seem to take a while. The comment moderation is on because of some past bad experience with some very horrible comments by a stranger who randomly found us after Gabe died. I'm just not willing to post them until I've read them. So, please leave comments! We'll get to them eventually, and they are such a blessing.

And for all you EB moms and medical peeps, please keep giving us advice. He's 8 in a million. We can all use the education. The doctors are just as interested in the suggestions as we are. THANK YOU! You are helping save his life.

jonah - sunday, march 1st

Sorry for the tardiness of this post – I’ve been trying to get it up since around noon.

We got to go to rounds this morning for Jonah, and it was so great to have a whole team of doctors and nurses there talking how to best serve and care for him. I didn't really know the rules for rounds, but I took it upon myself to ask lots of questions and offer LOTS of my opinions. The doctors were very patient with me, and didn't seem to mind my input at all. I was thankful.

We learned a lot. Jonah had a really hard time this morning when they changed all his bandages. Our weekend nurse, Stacey (who is totally awesome), said that she and the three other nurses doing the dressings were all three crying before it was over. She said his pain was a 9 at that point. She had to go up to 9 mics of pain medication (a very high dose), and still felt like he needed more. It's so hard, because there is a very fine line between easing his pain and putting him in respiratory danger. We don't want him to stop breathing again like yesterday, but it's so hard to see him in agony. They've stopped his 3 mics every 2 hour regimen, and have started a constant 1 mic drip. It will hopefully control his pain better, but is a lower dose than he had when his breathing stopped. They say this is better for him than the up and down of the every 2 hours dose.

They don’t know the state of his mouth and throat. He does seem to have some lesions in his mouth (has been sort of spitting up or letting dribble some white sort of thick liquid), and the ENT probably won’t see him until later in this week. Our biggest concern right now is that he needs to eat. Yesterday he wouldn’t try to suck on a bottle at all. We’ve tried twice today, and he seems to be trying to latch on, but then spits it all out. I worry about this a little – not knowing if it’s just that he has to learn to suck or that his throat is in a lot of pain. We hope it’s the first. They said that if he needs it, they will try a combination of Benadryl, Maalox, and Lidocane to help him with the sores. They’ve also started him on some Tylenol. To me, he doesn’t seem to be in pain when taking the bottle – he’s getting more and more interested.

A gastrointestinal doctor will see him tomorrow and the ophthalmologist will come on Wednesday. If he doesn’t start eating, they’ll have to put a feeding tube down his throat, which could be really bad as far as the lesions it could cause on the inside. He has to get nutrients besides just the sugar water, but a tube could cause major damage. He needs to get constant pain meds, but that puts him in danger as far as breathing. And they’re not able to monitor his pulse-0x like they need to some of the time, because everywhere they put the monitor either won’t stick because all of the skin is raw or the okay skin is covered in slippery ointment. Every solution seems to have so many risks.

The scariest thing we heard this morning is that Jonah is showing characteristics of the most severe type of EB – dystrophic. This is only one doctor’s opinion (Dr. Block seemed to think it was too soon to tell), but the doctor this morning said that between the severity of his current lesions, the percent of his skin that’s damaged, and the purplish lesions on his head, he really suspects that Jonah’s is a very severe case. It’s discouraging, to say the least.

I took a sleeping pill last night (a generic form of Ambien) and had MAJOR hallucinations. I can’t begin to explain how horrible it was, but by the time it was over, Matt was lying on one side of me, his mom on the other, with Matt holding my eyes closed trying to get me to go to sleep. I knew they were both there, but I could either not see them or they looked very scary. All kinds of creatures and figures floated around me (their skin peeling off), all pulling me back trying to take me away. I knew there were two realities – the reality of Matt in the room trying to calm me, and the reality of the hallucinations. One was no more real than the other. I kept saying to Matt, “Where are you? They are trying to take me.” It was the scariest non-reality reality I’ve ever experienced, and unfortunately I remember every detail. I felt Satan’s presence very real there. Although the hallucination was drug-induced, Satan definitely took advantage of my weakness. Between the stress and worry over Jonah, lack of sleep, having to face going home without a baby in my arms again, and the sleep drug, it was a bad night.

I will probably stay overnight since they are calling for snow here. They’re calling for 3-5 inches (so they tell me), so we’ll probably get a trace (and it will be the top news story for four days).

Prayer requests:
- That Jonah will continue to resist infection
- That he will eat and avoid a feeding tube
- That he will not have as severe of case as some doctors think
- And that we will have more days like yesterday and fewer nights like last night

Here are the most recent pictures of our little fighter.