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