our God of miracles

Very quickly because it's been an exhausting day.


Jonah cried all morning because of the steroids. By the time I got him on the bandage change table, he had been crying for about two hours straight. Because I had his torso bandages off, I could see that he was retracting at his rib cage and his breathing had become much more rapid.


I called my mom to come over and Matt to come home from work.


By the time they arrived, Jonah's breathing had become more stable (still sounded bad, but didn't seemed distressed anymore). Matt and I decided to take him to the hospital. We called the pediatrician and they set it up for us to go to the ER, with the understanding that we would be taken straight back, evaluated by the attending ER doc, and then his ENT would be paged. They had spoken with both the ER attending and Jonah's ENT so everyone was on board. Since he had stabilized, we were told it was okay to wait a couple of hours so we let Jonah take a nap. While he slept we packed EVERYTHING in case we were admitted - everything we could think up he might would eat by mouth, all his medicines, his g-tube stuff (for his water and meds), bandaging materials, toys, the laptop and DVD's etc. All we had left to do was change his diaper when he woke up, and then we would be on our way. For six days he had been having terrible growling type stridor and a hoarse voice. For six days I've been worried non-stop about my Sweet Boy's breathing.


He woke up.


He was breathing easy, no stridor, and had more of a voice than he's had since last Thursday. (I guess he had a blister and it finally popped in his sleep?) That Legion of Angels seems to still be protecting him, even now.


We're never alone. Praise God!


Oh, I guess you got that we never had to go to the hospital? Life is good.


Thank you so much for your prayers. 

breathing update

I took Jonah to the doctor at noon, and here's the skinny.


He's still moving air well and although he sounds HORRIBLE, he doesn't seem to be in any distress and is getting the oxygen he needs. If things stay as they are, he will be okay for now. If he's not better after 72 hours on the steroids (Wed night), we will have to see the ENT at the hospital (bronchoscopy? admission?) on Thursday.


If things worsen (he stops playing, begins breathing rapidly and is struggling, struggles talking, won't sleep, retraction etc.), we will be headed to the hospital. I asked the doctor to call the ENT at the hospital to give the department an idea of what's going. I'm trying to work it out to where if we do have to go to the hospital, we can get a direct admission through ENT rather than having to go to the emergency room.


In other news, having to suffer Jonah on steroids until Thursday morning is going to make me batty. Like seriously, y'all will be checking me in cause I'll have checked out. Prednisone, I loathe you (but also love you... funny).

quick prayer request

This will be quick because Matt and I are going to work on organizing the garage/start yard sale pricing stuff tonight. But I did want to mention that Jonah has been really hoarse and wheezing for the last three days. Matt and I suspect he has some blistering in his trachea and so his airway is at least partially constricted. I talked to Dr. Heather (his NICU doctor) today and described what was going on. She said she doesn't think he's in immediate danger yet (not retracting, color is good), but that if he gets any worse (stridor gets louder, retracting, color changes, rapid breathing), we need to take him into the Emergency Department. If he stays the same, I'll take him to the pediatrician on Monday. But hopefully he'll be fully restored by then.


Trying not to get discouraged with "It's always something" and be thankful. It doesn't help my attitude much that I spent the entire day sorting and pricing TONS of baby boy clothes, hardly any of which either of my sweet boys ever got to wear. So much of it is new and has only been washed twice - once before Gabe and once before Jonah. And there are also many many things that are new with tags. Having to sell them feels so... final. I don't know. I shed some tears. It's been hard. Anyway, we're having a yard sale on July 9th, so if you live close by and you have a baby boy, you should come. I would love some of these clothes to go to families who know our story. Either way, it's time to close the door on old dreams and start focusing on our new ones.


No church for us tomorrow given Jonah's fragile state right now, but I hope all of you have a blessed weekend.


I'll keep you posted on Jonah if there is any change, one way or the other. As always, thank you for your prayers.

computer in the shop

Just wanted to let you know that I haven't fallen off the ends of the bloggy earth. Our laptop is in the shop, and getting five minutes to come upstairs and post on the desktop is just that - about five minutes.

So hopefully I'll get back to more frequent posts in a couple days when the computer is fixed. (But more than anything, I want it back for dressing changes... no DVD distraction is KILLING me, and isn't so fun for Baby Jonut either.)

Very productive day - took Jonah to the GI, to the pediatrician (for a questionable looking place on his finger... think it's okay), mowed the lawn (with my mom's help), and was just finishing up dressing change when Matt walked in the door. So Jonah has just fallen asleep for his afternoon nap (he only slept for an hour after lunch) now at 5:45pm. You know what this means, don't you? UP. ALL. NIGHT.

We're just gonna hunker down. It's gonna be a long one.

(Oh yeah, a couple of you have asked about his breathing. Still the stridor, but only when he sleeps. I mentioned it again today at the Pediatrician's office, and they still seemed unconcerned. His color is great, and besides being raspy (because of the acid reflux???), he breathes easy when he's awake. He's not retracting and doesn't seem to be struggling at all. But man, it scares the dickens out of me. I guess they just expect him to grow out of it, but I'm keeping a close eye (ear) on it for signs of change... Thanks for asking!)