Jonah is not doing so well today. He's supposed to take 500-550 cc's in a 24 hour period, and he only ate 273 in the last 24 hours. He's really stuffy and lethargic. He's not laboring to breathe, but he's just congested sounding and really sleepy. He has a hard time taking a bottle because he can't breathe through his nose very well, and he'd rather sleep than eat. He doesn't have a fever. I'm not sure what's going on. Maybe just a cold. I don't know if that's a big deal with EB babies or not. The pediatrician's office is closed until tomorrow morning when they have their sick clinic hours. He's drooling a lot more than usual, which would seem to mean that it hurts to swallow, although that's just a guess.
Mom stayed last night to help with Jonah, so I definitely slept more last night than I have been, although I feel my eyes closing as I type this post. It's rainy and dreary here today, so I know that makes me sleepier. Matt's dad got here this morning, so he and Debbie watched Jonah while Matt and I went and grabbed some lunch at Fubbruckas and then went to Target for some Easter basket shopping. We then came straight home, because the Journal photographer came at 2:00. She's coming back at 8:00 tonight for Jonah's dressing change.
I'm feeling pretty down today, but only because Jonah's feeling down. I typically feel what he feels. I'm sad for him. I hate that he hurts.
Friday, April 10, 2009
Thursday, April 9, 2009
all is well
All is well. The ENT listened to Jonah and says that he's moving air very well. He's not laboring to breathe at all, and he said he's not concerned at all. He says that he's assuming it's just the result of some blistering and inflammation and that with all he's probably got going on down there, it will probably come and go throughout his infancy at least.
He says he doesn't want to send a scope down or take him to the OR for a lower respiratory exam unless there's a reason. And right now, there's no reason. :) We'll see him again in two months just to make sure things are still okay.
He says that if things start to go south, it would not be something immediate, but something that would happen over the course of a few weeks. He described the sounds we would hear and said that they wouldn't come and go, but that it would be constant, would get progressively worse, and there would be no micro-analyzing - it would be VERY obvious.
Thanks for praying. I can't wait until I'm more familiar with EB and know better what's nothing and what's worth worrying about. For now, all is well. Praise God.
He says he doesn't want to send a scope down or take him to the OR for a lower respiratory exam unless there's a reason. And right now, there's no reason. :) We'll see him again in two months just to make sure things are still okay.
He says that if things start to go south, it would not be something immediate, but something that would happen over the course of a few weeks. He described the sounds we would hear and said that they wouldn't come and go, but that it would be constant, would get progressively worse, and there would be no micro-analyzing - it would be VERY obvious.
Thanks for praying. I can't wait until I'm more familiar with EB and know better what's nothing and what's worth worrying about. For now, all is well. Praise God.
prayer request
Jonah woke up last night for his midnight feeding with a VERY hoarse cry. A hoarse cry is the one major symptom they had told us to look out for as an indicator of respiratory issues/laryngeal involvement. We were supposed to go to the ENT today at 4pm just for a check-up, but I called Dr. Ali (the WONDERFUL dermatologist at Baptist) this morning, and she's going to talk to the ENT and to Dr. Fine about what our course of action should be. I'm waiting on her call as I type.
Please be in prayer for Jonah, as this could be serious, and for us as we decide the best coarse of action. I debated taking him to the hospital last night, but didn't really want to go into the ER with a baby ER doctors know nothing about, EB they know nothing about, and didn't want to be in a place where there would be so many germs.
We'll end up AT the hospital today either way since we had the appt anyway, but I'm hoping to get in quicker and to see the right folks. Matt has called in to let them know he's not coming in to work until we have a better grasp as to the severity of what's going on.
Please pray for Jonah.
Please be in prayer for Jonah, as this could be serious, and for us as we decide the best coarse of action. I debated taking him to the hospital last night, but didn't really want to go into the ER with a baby ER doctors know nothing about, EB they know nothing about, and didn't want to be in a place where there would be so many germs.
We'll end up AT the hospital today either way since we had the appt anyway, but I'm hoping to get in quicker and to see the right folks. Matt has called in to let them know he's not coming in to work until we have a better grasp as to the severity of what's going on.
Please pray for Jonah.
Wednesday, April 8, 2009
a night with jonah - worth praying for
I just thought you guys might like to know what it is you pray for every night at 8pm. Jonah had a good night last night, so we were able to go slow enough to take some pictures.
This is the current set-up on our dining room table. The house looks like it has thrown up a concoction of baby stuff mixed with a big ol' helping of medical supplies. Sometimes it feels like the walls are closing in, but it's all TOTALLY worth it for Jonah. Our church is finishing our basement room to include lots of storage for all his supplies, a changing table for dressing changes (one high enough that we're not breaking our backs like we are now), and a sink. What a beautiful gift! I can't wait til it's finished. Doing nightly dressing changes on our dining room table doesn't exactly make it conducive to eating dinner. :)
After draining his blisters, we then put double antibiotic ointment on any open or raw looking wounds, especially the blisters we've just drained. We then cover the limb in Aquaphor (tried covering the bandages and not his leg, but they seem to stay put better if we grease up his leg rather than the bandaging.) We then put cut up strips of Vaseline gauze (slathered on both sides in LOTS of extra Aquaphor to prevent drying out) between each toe, and then use two to three half pieces of Vaseline gauze to create a little boot on Jonah's foot.
We then wrap his leg using Mepilex Transfer. It usually takes three strips, the top strip having three slits cut in it to make it lay on his upper thigh better. (Whoever suggested that, I could KISS you - great idea!!! Has made our lives - and Jonah's thighs - so much better.) (Keila, sorry I'm using the burp cloth you gave us to cover Jonah's wee-wee. He has peed on me one too many times. I also use it as a burp cloth, just so you know... having washed it thoroughly in hot water, of course).
We then wrap the Transfer using Conco Conforming Gauze. It's much softer than the Kendall Conform we were using at the hospital.
Look at that BEAUTIFUL skin!!! Look what you've been praying for. Look what God has done! Praise the LORD!
This is the current set-up on our dining room table. The house looks like it has thrown up a concoction of baby stuff mixed with a big ol' helping of medical supplies. Sometimes it feels like the walls are closing in, but it's all TOTALLY worth it for Jonah. Our church is finishing our basement room to include lots of storage for all his supplies, a changing table for dressing changes (one high enough that we're not breaking our backs like we are now), and a sink. What a beautiful gift! I can't wait til it's finished. Doing nightly dressing changes on our dining room table doesn't exactly make it conducive to eating dinner. :)
This is Jonah's left leg. It does not look this red in person. This is the knee that was so bad it made you want to cry. It's completely healed, although I think it will always be discolored. The tops of his feet still get blisters most days, so that's why it still looks a little raw. Healing is quick though, and there were no new blisters on his hands or feet tonight. Hooray!
First we unwrap the three layers of bandaging from the leg. Next, we do his exercises (below picture), especially focusing on the ankles since Jonah tends to always pull his feet up. We then wash the limb with soapy water and then rinse with regular water using a bulb syringe. We go through Chux pads (water proof blue sheets) like nobody's business. After washing, we then drain any new blisters (you want to drain blisters after the skin has been cleaned). There were no new blisters on his left leg or foot last night.
After draining his blisters, we then put double antibiotic ointment on any open or raw looking wounds, especially the blisters we've just drained. We then cover the limb in Aquaphor (tried covering the bandages and not his leg, but they seem to stay put better if we grease up his leg rather than the bandaging.) We then put cut up strips of Vaseline gauze (slathered on both sides in LOTS of extra Aquaphor to prevent drying out) between each toe, and then use two to three half pieces of Vaseline gauze to create a little boot on Jonah's foot.
We then wrap his leg using Mepilex Transfer. It usually takes three strips, the top strip having three slits cut in it to make it lay on his upper thigh better. (Whoever suggested that, I could KISS you - great idea!!! Has made our lives - and Jonah's thighs - so much better.) (Keila, sorry I'm using the burp cloth you gave us to cover Jonah's wee-wee. He has peed on me one too many times. I also use it as a burp cloth, just so you know... having washed it thoroughly in hot water, of course).
We then wrap the Transfer using Conco Conforming Gauze. It's much softer than the Kendall Conform we were using at the hospital.
Then, we put Tubifast on top (green stripe for legs, red stripe for arms) to hold it all in place. What I LOVE about Tubifast is that you can wash it and use it over and over again. It gets softer with each washing. Stringy little boogers though after a wash. We spend lots of time cutting the strings off. Thanks for the suggestion about washing and drying them in a lingerie bag. I was driving myself crazy having to pull 10 pieces of staticky Tubifast pieces off of Jonah's blankets.
Matt unwrapping Jonah's right leg... wait for it... wait for it...
Look at that BEAUTIFUL skin!!! Look what you've been praying for. Look what God has done! Praise the LORD!
Jonah had a new blister on the back of his right heel last night.
About to lance the new blister. You have to lance them or they will pull the edges of the skin, and the blister will just get bigger and bigger. And a lot of times they refill if you don't poke enough holes or don't make sure it's completely drained. Lancing is VERY hard to do if Jonah is not calm, especially if the blisters are in a dangerous spot. (I had to lance one yesterday that was on his eye lid... talk about scary. I waited until he was really, really, really asleep. He didn't even flinch).
Jonah's right arm. The process for the arm is basically the same as for the leg - unbandage, exercises (focusing on his wrists, pinkies, but most importantly his thumbs with he keeps pulled in all the time), wash, rinse, dry, Vaseline gauze in between fingers, around thumb, hand, and wrist, Transfer around the arm, Conco Conforming, Tubifast. He HATES having his hands bandaged. It is extremely hard to wrap a clinched fist. Last night he did well. Usually it would be very difficult to get a picture of his opened hand. This hand is in a mitten tonight instead of bandaged. I'm TERRIFIED of what we might find tomorrow, but we have to learn from trial and error. If we could keep him in mittens instead of all bandaged up, he could have more movement of his fingers and thumbs. I'm afraid to keep them completely unwrapped at this point, even if they were completely healed.
And VOILA! The clean (sort of), sweet smelling (Focus on the head, people. Focus on the head), newly bandaged, newly FuzziBunz-ed Jonah!
Isn't he just the sweetest thing? Worth praying for huh? I cannot tell you how much we appreciate your daily and nightly prayers for Jonah. I know you may just feel sometimes that you are saying the same words over and over again at the same time every night - maybe you don't "feel" them like you did the first time you prayed. But look what you're doing! Thank you from the bottom of our hearts, from the tops of our heads to the tips of our toes. Thank you for praying for Jonah. And thank you, God, for healing our little boy.
About to lance the new blister. You have to lance them or they will pull the edges of the skin, and the blister will just get bigger and bigger. And a lot of times they refill if you don't poke enough holes or don't make sure it's completely drained. Lancing is VERY hard to do if Jonah is not calm, especially if the blisters are in a dangerous spot. (I had to lance one yesterday that was on his eye lid... talk about scary. I waited until he was really, really, really asleep. He didn't even flinch).
Jonah's left arm. Isn't it beautiful? Look at those perfect fingers. I just want to kiss them all over. Do you remember how I described his hands before - that the looked as if he had put them in a fire and left them there? They were completely raw - the whole top layer of skin completely gone - and deep red and purple. But look!!! I can't even tell you how amazing it has been watching God heal him - right before our very eyes. Jonah is so close to just wearing a mitten on this hand, but the other side is a little raw from a couple blisters he had. Just waiting for those to heal, and hopefully we'll be at mitten stage.
Jonah's right arm. The process for the arm is basically the same as for the leg - unbandage, exercises (focusing on his wrists, pinkies, but most importantly his thumbs with he keeps pulled in all the time), wash, rinse, dry, Vaseline gauze in between fingers, around thumb, hand, and wrist, Transfer around the arm, Conco Conforming, Tubifast. He HATES having his hands bandaged. It is extremely hard to wrap a clinched fist. Last night he did well. Usually it would be very difficult to get a picture of his opened hand. This hand is in a mitten tonight instead of bandaged. I'm TERRIFIED of what we might find tomorrow, but we have to learn from trial and error. If we could keep him in mittens instead of all bandaged up, he could have more movement of his fingers and thumbs. I'm afraid to keep them completely unwrapped at this point, even if they were completely healed.
After we do the four limbs, we wash and rewrap his torso. His back is blister free and has been since the beginning - even when it's not bandaged. I make him a little shirt with Transfer that goes over his right shoulder, and then wrap the Conco Conforming around him. He does NOT like being picked up for the wrap around. But luckily it's the last thing we do (besides a final diaper change and hair washing), so he gets over it pretty quickly.
And VOILA! The clean (sort of), sweet smelling (Focus on the head, people. Focus on the head), newly bandaged, newly FuzziBunz-ed Jonah!
Isn't he just the sweetest thing? Worth praying for huh? I cannot tell you how much we appreciate your daily and nightly prayers for Jonah. I know you may just feel sometimes that you are saying the same words over and over again at the same time every night - maybe you don't "feel" them like you did the first time you prayed. But look what you're doing! Thank you from the bottom of our hearts, from the tops of our heads to the tips of our toes. Thank you for praying for Jonah. And thank you, God, for healing our little boy.
jonah - tuesday, april 7th
Great dressing change tonight!
We got a really late start, because the reporter from the Journal came to interview us for a follow-up story on Jonah. It was a good talk, and very hopeful compared to the last time we spoke with her. She asked me at one point if I felt like a mom. I said, "I feel like a caregiver"... which sounds really bad, but that's not how I meant it. What I meant was that with so many people around and with all the help, it feels like Jonah is a community child (which is great), so I just feel like one of many who are caring for him. It's the whole "It takes a village" concept. But I don't really think I'll fully grasp the concept of "mom" until all the help leaves, we're on our own, and we start creating our "normal." I still feel like a confused kid most of the time, so the fact that I'm responsible for the life of another human being blows my mind... still adjusting. In lots of ways, though, I definitely feel like a mom - the instincts kicked in with Gabe, and I've never really been the same since.
It's so great that this time when the photographer comes, he'll be taking photos of Jonah from our house. Hooray! I'll let you know when the story runs.
I had Kathryn take pictures of the dressing change tonight, so I'll plan on posting those tomorrow along with an explanation of the process. I use the term "plan" very loosely. I know this is hard to believe, but I'm not the one who calls the shots around here these days. Just so you know, I may post some pictures that would be tough on little eyes, so maybe preview the blog before you bring the kiddos to look at pictures of little Jonah. He looks GREAT, but I'm using my crappy camera (I had been using my sisters' awesome cameras), so it blows out the pictures, and even the parts that aren't really red in person look red in the photos... all that to say that the pictures will NOT do him justice.
Off to bed. If tonight is like last night, I'll be up from 3am to 6am hanging out with Jonah. He's wide awake and content (as long as you're holding him) during that time. See? I told you I don't call the shots. These pictures were taken at 4:00 this morning.
Monday, April 6, 2009
update - monday, april 6th
Wow, you guys are amazing. I think I was thinking, "Pity, Party of 1," but I should have known I wasn't alone. Thank you for loving us. I can't understand why you do, but it sure means so much to us.
We DO have to keep him wrapped, even though his arms and legs are looking better. He's still getting new blisters, and you never know when or why they're going to pop up. (He had a new one on his arm, two new ones on his belly, and two new ones on his feet tonight). If he was uncovered, he would hit his arms and legs against things and against himself, and he would get blisters everywhere. The SLIGHTEST friction will cause a new blister.
I guess I should make it more clear that I DO have help. Matt's mom is still here, and my mom is helping a lot too (she's local so isn't staying here... although she did nights for me last week - woo-woo - because they had spring break). Debbie will be here through the rest of the week, and next week my brother will be coming for a day, my mom will take off to be with us, and Debbie will be back at the end of the week. We are SURROUNDED by love and support... just wanted to make that clear. But sometimes you still feel alone, even if it is irrational. Not that I would EVER be irrational. Totally NOT my style.
Jonah's dressing change went much better tonight. He only got really upset at the very end when we were bathing and rewrapping his torso. He was ready to be all done. The home health care nurse (who also happens to be Jeannie, my best friend Kathryn's mom) weighed Jonah tonight, and he's up to 8 lbs 10 oz, so that's very good news. I did call the pediatrician today, and she has switched him to Prevacid. I'll give him his first dose with his next feeding. The appointment with the ENT is still on Thursday, and I'll only move it up if the Prevacid doesn't seem to help... although I figure it may take a couple days to see a difference. I am happy about the weight gain, but it still bothers me to see Jonah in so much pain when he's eating. The doctor said everything I'm describing sounds like typical reflux, but that he's probably just in more pain because it's likely he has some blisters in his throat. Poor thing. But if his throat is like the rest of his body, they will come and they will go. He'll heal quickly.
Matt wants me to post about specifics of the dressing change, so you'll know exactly what you're praying for, but I'm too tired tonight to go into all of that. I'll try to give some more details soon.
As far as your comments (the ones I've had a chance to read so far...) -
Jonah is on Magic Mouthwash, although his does not have lidocaine because we give it by syringe, and it's something he swallows. It's a combination of Bendryl, Maalox, and something else I can't remember... I just remember specifically that they said it doesn't have lidocaine.
We can't move dressing changes to the morning (as much as I would LOVE to get it over with), because Matt has to work, and I need his help. Also, because he's on the pain meds, we want him to be on the sleep at night, be awake during the day schedule. If we gave him the meds during the day, he'd be zonked all day, wouldn't eat very well, and would probably be up even more at night.
We DO have to keep him wrapped, even though his arms and legs are looking better. He's still getting new blisters, and you never know when or why they're going to pop up. (He had a new one on his arm, two new ones on his belly, and two new ones on his feet tonight). If he was uncovered, he would hit his arms and legs against things and against himself, and he would get blisters everywhere. The SLIGHTEST friction will cause a new blister.
I don't think he has an infection. His temperature has been good, and he doesn't seem lethargic. He's more irritable because he's starving and tired. And he's tired because he's hungry and waking up to eat a lot. (That's my guess anyway.)
That's all I can remember as far as comments at this point, but the last time I read them, there were only 78. I have some catching up to do. Sheesh.
Here is our family picture. I didn't want to post a smiling picture earlier today (you know, since I was in such a great mood and all), but for now, I'm done feeling sorry for myself. (Don't ask at 3 am.)
I have lots more pictures from Gabe's spot I'd like to share, but again, too tired tonight. I need to sleep while I can.
I have lots more pictures from Gabe's spot I'd like to share, but again, too tired tonight. I need to sleep while I can.Thanks again for praying for us. Can't you tell it's working already? Even having only read 78 of the comments, I feel so lifted up, loved, and supported. What an amazing thing to be part of the Body of Christ - to be connected by only one thing - the blood of Jesus. You know, just that one little thing. :) Through YOU, God shows me that He's not far off. He's next door, across the country, across the world... He's so close. Thank you for reminding me.
My sweet boys.
prayer request
Please be in prayer for Jonah. He's not eating well, and acts like he's in a lot of pain when he does eat. He'll take an ounce or so, and then he just starts crying. It takes at least an hour to get him to eat two ounces and half the time he won't even take that much. And when he does have a good feed, he spits up half of it. Because he's not eating well, he's also not sleeping well overnight (waking up every hour), so I'm getting frustrated and really irritable. I feel overwhelmed and exhausted.
He has new blisters all over his belly all of a sudden and a big blister on his lip.
His dressing change last night could be classified as a disaster, and we had to quit half-way through to try to calm him down. It didn't really work, so he basically cried through the whole thing. He's still on morphine and ativan, but last night, you would have thought he wasn't on anything. We didn't even get to do his right arm because he was so upset. He's getting a rash because he's hot, moist and dirty, and the only way we can bathe him is by bulb syringe, one limb at a time. He usually freaks out when we do it, so we can't really clean him well, and definitely can't get in all the nooks and crannies like we need to. I can't even give my baby a real bath.
I generally just feel pretty ticked off these last couple days at the unfairness of it all, and am having myself a big ol' pity party. I HATE feeling like that, and I HATE that Jonah is in pain and I can't take it away. I HATE that our "family photo" was taken at a cemetery yesterday, and I HATE that my baby can't even eat without hurting. I HATE that his face and head are getting blisters a lot now (since this was a pretty durable place previously), and I HATE that he's tired and hungry. I'm afraid that if he doesn't start eating better soon, we'll end up back in the hospital. Please pray that he will begin eating better and that we will figure out what we can do to help him. I'm going to give it until tomorrow and then may have to take him back to the doctor. I'm not sure what they can do, though, until we see the ENT, and that appointment is not until Thursday.
I'm completely frustrated, and if I really admit it, angry. And as much as I hate feeling it, I'm angry at God a lot of the time. I just don't get it. Please pray for me that I will regain perspective, and that once again I'll feel like God and I are on the same side... that I'll feel his arms of comfort and peace around me... that I'll draw near to him again - He hasn't gone anywhere, but He's feeling pretty far away.
He has new blisters all over his belly all of a sudden and a big blister on his lip.
His dressing change last night could be classified as a disaster, and we had to quit half-way through to try to calm him down. It didn't really work, so he basically cried through the whole thing. He's still on morphine and ativan, but last night, you would have thought he wasn't on anything. We didn't even get to do his right arm because he was so upset. He's getting a rash because he's hot, moist and dirty, and the only way we can bathe him is by bulb syringe, one limb at a time. He usually freaks out when we do it, so we can't really clean him well, and definitely can't get in all the nooks and crannies like we need to. I can't even give my baby a real bath.
I generally just feel pretty ticked off these last couple days at the unfairness of it all, and am having myself a big ol' pity party. I HATE feeling like that, and I HATE that Jonah is in pain and I can't take it away. I HATE that our "family photo" was taken at a cemetery yesterday, and I HATE that my baby can't even eat without hurting. I HATE that his face and head are getting blisters a lot now (since this was a pretty durable place previously), and I HATE that he's tired and hungry. I'm afraid that if he doesn't start eating better soon, we'll end up back in the hospital. Please pray that he will begin eating better and that we will figure out what we can do to help him. I'm going to give it until tomorrow and then may have to take him back to the doctor. I'm not sure what they can do, though, until we see the ENT, and that appointment is not until Thursday.
I'm completely frustrated, and if I really admit it, angry. And as much as I hate feeling it, I'm angry at God a lot of the time. I just don't get it. Please pray for me that I will regain perspective, and that once again I'll feel like God and I are on the same side... that I'll feel his arms of comfort and peace around me... that I'll draw near to him again - He hasn't gone anywhere, but He's feeling pretty far away.
Saturday, April 4, 2009
may the force be with you
Jonah the Jedi
Jonah had a rough go of it tonight. I can't figure out what's different from night to night. Jonah's a conundrum. Thanks for your continued prayers. Only two new blisters tonight - that's a good night. No new news to report.
Did I mention I'm tired?
Friday, April 3, 2009
jonah - 5 weeks old today
Jonah's dressing changes have gone well the last couple nights. (Thank you so much for praying!!!) I hope we're finally getting into a good routine. I want so badly to take all his bandages off and give him a real bath before redressing him, but what if he freaks out, he's completely unbandaged, and we can't get him wrapped again??? Very scary thought. So for now it's limb by limb, sort of the torso, and then his hair... all by bulb syringe. But man, I could sniff that little head all night after I wash his hair... so sweet.
I have to tell you guys - unwrapping him every night is a remarkable gift. We are literally watching God perform a miracle right in front of our eyes. Every night his skin looks better and better. His arms and hands are currently completely blister free, although we continue to wrap them for fear of leaving them unprotected. He has beautiful skin. I don't know if it's really the most beautiful skin in the world or if I just have a new appreciation for skin. It could be the aquaphor. :) His legs are looking much better, although I think his left knee may be permanently scarred. It looks healed but is still a purple color. His upper thighs are looking much better, and he's only getting isolated blisters now on his legs and feet. We thought about just putting mittens on his hands tonight and not wrapping them, but I'm worried he will rub his fingers together and cause more blisters. Wrapped he's limited in motion and encumbered. Unwrapped he's at risk. I dunno.
Grandaddy (Matt's dad) arrived today, but Kim (Matt's sister) didn't make it after all because all the flights from NY were canceled... weather I think. I know she's bummed, and we are too. Peyton (my brother) and his wife, Amy, and kids will be here at some point this weekend as well as my parents. I love having all our family around, and it's especially nice having the extra hands. It usually takes three people to change his diaper. One to hold the paci, soothe, and keep him from scooting off the table, one to prepare his butt patch and do the cleaning and aquaphoring, and one to lift him gently by the knees to put the diaper under. Shwoo. (And I probably don't have to tell you guys this, but breast-fed babies poop A LOT.)
We have a busy week next week, and I'm not looking forward to having to lug Jonah around town - he's not the biggest fan of the car seat, nor am I. We have several appointments next week including OT and the ENT (on Thurs). His stridor has not been nearly as bad these last couple days (although he's having a lot right now as he sleeps and I type). I usually don't notice it except right after he eats. He gulps no matter how much I try to slow him down. He's quite the voracious eater for the first couple ounces and then he tends to wimp out at the end. I'd still like to see him eating more - back to the 90 or 100 cc's (at least 3 ounces) he was eating at the hospital. He's probably averaging 60-70 cc's at this point. His current weight is 8 lbs 4 oz - just in case you were wondering.
The weather is supposed to be beautiful here this weekend, so if it's not too windy, we plan on taking Jonah to Gabe's spot for the first time. I'm excited. I haven't been out there since right before Christmas, and I'm dying to get back. I hope the ducks and geese are back. It's so pretty, and I know Jonah will want to spend many an hour there. I hope it will help him feel more connected to Gabe somehow. I miss Gabe a lot these days. We're approaching what would have been his one year birthday (April 22nd). It's hard to believe it's been a year. As I do all these baby things with Jonah, I just imagine having done them with Gabe. I hope he's proud of us. He makes me want to be a better person. I can't wait to tell Jonah all about him.
Here are some pictures from today.
Time with daddy. It looks like he's smiling in a lot of these pictures, although he's not - at least not in reaction to anything yet. I guess a few more weeks?
Tummy time on the sofa. He raised his own head and put his arms under himself like that. Too cute.
Another sweet one. This blister on his face started out tiny. We've drained it three times. I think it's finally done growing. Poor thing. Takes up the whole side of his face.
Thursday, April 2, 2009
more photos from home
Jonah looked so cute (and hilarious) with his arms sticking straight out, I could barely get him hooked in because I was laughing so hard.
Jonah's first construction delay. No worries. He was only screaming bloody murder in the back seat. By all means, put up your stupid "slow" sign.
Deac and Jonah meet for the first time. Deac has been basically indifferent to Jonah, although every time I talk in my baby voice, Deac comes over thinking I'm talking to him. Poor thing. I'm sure he'll soon realize he's no longer top dog.
Jonah on drugs (did not really have the sedation effect we were hoping for last night, as you can see). Mommy without make-up (a luxury these days).
Tummy time with dad.
Jonah on drugs (did not really have the sedation effect we were hoping for last night, as you can see). Mommy without make-up (a luxury these days).
Tummy time with dad.
letter to jonah
If you haven't come across it already, please head over to Matt's Aunt Katherine's blog to read this beautiful letter to Jonah. I cried pretty much the whole way through it, so you may want to grab your kleenex, you know, if you're a complete emotional psycho freak tenderhearted like I am.
Plus, Katherine can pretty much write the socks off anybody, so you'll enjoy being there. Just what we all need, right?... one more blog to get hooked on. Happy stalking!
Plus, Katherine can pretty much write the socks off anybody, so you'll enjoy being there. Just what we all need, right?... one more blog to get hooked on. Happy stalking!
Wednesday, April 1, 2009
questions answered
1. Yes, I did get a haircut. Thank you for noticing. I figured I better get it cut before we came home from the hospital... won't be leaving for a while. I wanted to get it cut before Jonah was born, but was afraid it would exacerbate my fat face issues previously referenced here and here.
2. Yes, Jonah gets new blisters every day. Some are cause and effect. Some pop up for no apparent reason. We have to lance and drain them with a sterile needle as soon as they come up. If not, they pull the skin around the blister and it just gets bigger and bigger. However, we've drained several the last couple days that have just refilled and become bigger. Frustrating.
3. Coming home. We put thicker dressing on his chest and shoulders and bought soft padding for the car seat and car seat straps. We loosened the straps, put him in, and then tightened the straps, so we didn't have to maneuver his arms too much. He wore a blue little gown with a satin lining and no insides seams. Jeannie (my best friend Kathryn's mom) is working on some EB clothes using patterns EB folks have sent us. I would LOVE to have satin, seamless undergarments he could wear that would protect his skin so that he could wear all his regular clothes (we have tons and tons between what was bought for Gabe, Jonah, and hand-me-downs) on top.
4. Cloth diapers. We are now stocked up on FuzziBunz (but I'm still scared of the elastic so haven't tried them yet), but have been using the little fleece concoction my mom came up with. I've also heard good things about Happy Heinys and Thirsties. Basically, he just can't have elastic around his legs or abrasive velcro or anything that's not soft. Soft has taken on a whole new definition now.
5. His hands, feet, arms, and legs are looking much, much better. His right arm and hand were almost completely healed, until we unwrapped his arm one night and he freaked out (that really bad night at the hospital). We had to get it wrapped back up, but apparently did some damage to his hand because the next night his right hand and fingers were covered in blisters yet again. I'm still having a TERRIBLE time getting his little thighs wrapped up to his groin. The backs of his thighs are where he gets the worst blisters, and it's also the HARDEST place to wrap, by far. The tubifast rolls down and the transfer or lite slips down throughout the day. Or, if it does stay on, it flips down over the tubifast and gets soiled during the day. Any ideas??? What works on the tops of their fat (but cute!) little thighs? He had a big place where the skin just came off on his tooshy today, so diaper changing is not fun. I keep double antibiotic ointment and Aquaphor on his whole bottom, but I know it must hurt when he poops or pees. It's also VERY hard to clean the poop off the raw place without hurting him further. This is really disheartening because his bottom has been in fairly good shape for a couple weeks now.
6. Although he's just been snorty today for the most part, last night he was having a lot of strider (high pitched breathing noises - not sure if this is something you have or do, but you get the idea). It was so loud that my little sister could hear it in the living room (our bedroom is right off the living room, but still). I called the doctor today and they are supposed to be working on scheduling an appt with an ENT. I'll call tomorrow and see when it's scheduled for. His breathing is making sleeping very difficult. Not only am I worried about him, but it's so loud, it literally keeps me awake. We got an angel care monitor so I'll know if he stops breathing for more than 20 seconds, so that helps with the worry. BUT I still worry a lot, and it's just loud. I am a very light sleeper.
Those are all the questions I can remember off the top of my head, so if you have others, you'll have to pose them again. For some reason I just don't have time to go back and reread all my comments since he's been born. :) Although I'd love to since I'm now in a more focused state of mind.
His dressing change was rough last night. Not the worst, but he was unhappy and wiggly most of the time. Matt's mom is helping me during the day and my mom is helping out at night. Matt helped a lot the first night, but he's having to get up and go to work, so he needs his sleep worse than I do. I, however, am very tired. You know you're really tired when your breast pump talks to you. It either says "youmightbedumbyoumightbedumbyoumightbedumb" or "you'reheidiklumyou'reheidiklumyou'reheidiklum" depending on my self-esteem level at the time. I told Jonah the other day that my whole self-worth depended on him. No pressure or anything.
2. Yes, Jonah gets new blisters every day. Some are cause and effect. Some pop up for no apparent reason. We have to lance and drain them with a sterile needle as soon as they come up. If not, they pull the skin around the blister and it just gets bigger and bigger. However, we've drained several the last couple days that have just refilled and become bigger. Frustrating.
3. Coming home. We put thicker dressing on his chest and shoulders and bought soft padding for the car seat and car seat straps. We loosened the straps, put him in, and then tightened the straps, so we didn't have to maneuver his arms too much. He wore a blue little gown with a satin lining and no insides seams. Jeannie (my best friend Kathryn's mom) is working on some EB clothes using patterns EB folks have sent us. I would LOVE to have satin, seamless undergarments he could wear that would protect his skin so that he could wear all his regular clothes (we have tons and tons between what was bought for Gabe, Jonah, and hand-me-downs) on top.
4. Cloth diapers. We are now stocked up on FuzziBunz (but I'm still scared of the elastic so haven't tried them yet), but have been using the little fleece concoction my mom came up with. I've also heard good things about Happy Heinys and Thirsties. Basically, he just can't have elastic around his legs or abrasive velcro or anything that's not soft. Soft has taken on a whole new definition now.
5. His hands, feet, arms, and legs are looking much, much better. His right arm and hand were almost completely healed, until we unwrapped his arm one night and he freaked out (that really bad night at the hospital). We had to get it wrapped back up, but apparently did some damage to his hand because the next night his right hand and fingers were covered in blisters yet again. I'm still having a TERRIBLE time getting his little thighs wrapped up to his groin. The backs of his thighs are where he gets the worst blisters, and it's also the HARDEST place to wrap, by far. The tubifast rolls down and the transfer or lite slips down throughout the day. Or, if it does stay on, it flips down over the tubifast and gets soiled during the day. Any ideas??? What works on the tops of their fat (but cute!) little thighs? He had a big place where the skin just came off on his tooshy today, so diaper changing is not fun. I keep double antibiotic ointment and Aquaphor on his whole bottom, but I know it must hurt when he poops or pees. It's also VERY hard to clean the poop off the raw place without hurting him further. This is really disheartening because his bottom has been in fairly good shape for a couple weeks now.
6. Although he's just been snorty today for the most part, last night he was having a lot of strider (high pitched breathing noises - not sure if this is something you have or do, but you get the idea). It was so loud that my little sister could hear it in the living room (our bedroom is right off the living room, but still). I called the doctor today and they are supposed to be working on scheduling an appt with an ENT. I'll call tomorrow and see when it's scheduled for. His breathing is making sleeping very difficult. Not only am I worried about him, but it's so loud, it literally keeps me awake. We got an angel care monitor so I'll know if he stops breathing for more than 20 seconds, so that helps with the worry. BUT I still worry a lot, and it's just loud. I am a very light sleeper.
Those are all the questions I can remember off the top of my head, so if you have others, you'll have to pose them again. For some reason I just don't have time to go back and reread all my comments since he's been born. :) Although I'd love to since I'm now in a more focused state of mind.
His dressing change was rough last night. Not the worst, but he was unhappy and wiggly most of the time. Matt's mom is helping me during the day and my mom is helping out at night. Matt helped a lot the first night, but he's having to get up and go to work, so he needs his sleep worse than I do. I, however, am very tired. You know you're really tired when your breast pump talks to you. It either says "youmightbedumbyoumightbedumbyoumightbedumb" or "you'reheidiklumyou'reheidiklumyou'reheidiklum" depending on my self-esteem level at the time. I told Jonah the other day that my whole self-worth depended on him. No pressure or anything.
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