Tuesday, September 29, 2009
Monday, September 28, 2009
Friday, September 25, 2009
Wednesday, September 23, 2009
Tuesday, September 22, 2009
Friday, September 18, 2009
Thursday, September 17, 2009
Wednesday, September 16, 2009
She's got one of her Z-Flo positions under her super plushy fuzzy blankets, nurse Ann gave her 4 oz at 2:45 AM and changed her diaper, her trusty lullaby seahorsey is next to her, she's got her cool, humidified, purified air pumping into her trach, and she's tucked in under another super soft super fuzzy blankie.
Nice work if you can get it.
Tuesday, September 15, 2009
Then last night it was Duckie's (aka Jon Cryer - yes we do call it Jon Cryer - we are children of the 80's after all) turn:
This is my view of stroller time - and now that Leah knows where I am during it all, she looks up at me a lot:
We paused for a suctioning and Leah got to enjoy some Monday night football (yuck) from her stroller:
Call me optimistic but I think this looks says: "Football sucks - I'd rather be watching Baseball".
Stroller time is indeed awesome: it calms her down when she starts getting kicky and fidgety, it's exciting to see new things and sometimes we take her for a lap or two in the backyard, and it's soothing to the point of sleep.
This is how last night's stroller session ended:
Sunday, September 13, 2009
Friday, September 11, 2009
Thursday, September 10, 2009
Leah is 7 months old today!!!
She is getting so big! But that outfit you see her in, its a 3 month size - so .... she's not really that big. I found that outfit on clearance at Target yesterday. $3.98!
And on the clothing front: super sweet Aunt Penny's super nice neighbor who sews like the wind has offered to make Leah some clothes! I took her measurments today and I have asked for some baby kimono gowns for her so I'm super excited to see what our master seamstress can whip together for her. Leah already has one baby kimono (that she's actually wearing right now but judging from it's size it won't last long). But it's way easy to get on her (no stretching it over her head) and way easy to change her in (just untie it and open it on up). So I think those will work really well.
And here is Leah participating in her newest activity:
She doesn't look so happy in this picture - but believe me, she loves it. Basically we just wheel her around the downstairs level of the house in her umbrella stroller. We did 2 separate sessions of this today for about an hour and a half total. I don't know how many times I can make it seem really exciting to be "in the kitchen again!!" but if it entertains her I'll say it all day long.
And finally another picture, here she is being buckled up for safety:
Tuesday, September 8, 2009
Jeff and I went and sat in the waiting lounge. I held Leahs fuzzy yellow ducky and did my mantra that is part-prayer, part-demand: 'Breathe Leah, breathe. Breathe Leah, breathe.' I did it back in July while standing in the hallway waiting for the social worker on the night her emergency trach surgery was performed. I like to think it helped because her surgeon said he was amazed that she had never stopped breathing throughout the whole ordeal.
Around 8:30 Dr. Preciado (Leah's ENT surgeon) brought Jeff and I back to speak with us. He said Leah did great, that she was back in recovery slowly waking up; but that her airway is still being affected by her EB. With the trach she is fine - but without it we'd be in deep doo doo (my words, not his). So the trach is our friend.
Apparently Leahs vocal cords are now appearing "abnormal" while before they were "severely swollen". I don't know what would be 'normal' for a JEB baby with airway swelling and a trach (nor, most likely does the doctor) so I'll take that for what it is. And I can't say I'm surprised by his evaluation: obviously her EB is the reason for her trach and so obviously her airway and throat will be an issue.
Then we got to go back to see her. I was pleasantly surprised that she looked good, despite being somewhat askew in her bed and obviously upset and confused by what was going on. She had a trach-full of blood but other than that she was fine. All the staff there was great with really paying attention to being extra careful with her skin - after we drilled the whole 'butterfly wings' idea into their heads.
The nurse told us we'd be in the recovery room until about 1, when a doctor would come by to see how Leah was doing, and our discharge or admittance would be determined then. Their main concern was the amount of blood in her trach but thankfully, it decreased dramatically after a few suctions. Around 9:30 I gave her about 2 ounces of pedialyte, just to see if she could hold liquids down. After that we did half-formula, half-pedialyte. She drank a good 4 ounces in all and kept it all down. Then I read the entire collection of 'Where is the Puppy?' Sesame Street books (4) to her and just tried to keep her calm and happy. Somewhere around 10:30 she dozed off for a nap.
Then at 12:30 one of the ENT doctors we've come to know well came by to check on us and to our surprise, said we were good to go home!!! Jeff took some bags down to the car while I gave Leah another bottle (5 1/2 oz) to tide her over for the car ride home. Her IV came out, diaper got changed and we were on the road and home by 1:30!
At the moment she's watching Handy Manny and playing with her binky. Jeff is napping on the couch (and periodically startling Leah with his snoring) since we had to get up at 4:30 this morning. He'll wake up in a bit and take over with Leah until the nurse gets here so I can go to bed early.
Alright, I just wanted to update everyone on surgery day!
Sunday, September 6, 2009
And finally, today I'm getting everything ready for our trip to the hospital tomorrow for Leah's follow up surgery (ie. second look at her airway).
Tuesday, September 1, 2009
And just one of those boxes was trach supplies. I'm still waiting on a box of new trachs, and a box of her formula. All the other boxes are from our wound supply company.
But anywho, since I didn't know if we'd be able to afford to keep her COBRA coverage for September, I went and ordered tons of stuff while August was still paid for. I made a bonehead move and failed to put the word "rolled" in front of the word "gauze" in my email to our supply contact so now I have a case of square gauze I can't use. Perhaps I'll donate it to the DebRA foundation.
Of course, we have secondary Medicaid insurance for Leah but the supply company we use does not currently have a contract with Leah's specific managed care program under Medicaid, so we're waiting to see if they can work something out and then I'll know COBRA isn't needed. Ah, the fun I have all day dealing with insurance, paperwork, bills, medical supply companies, supply orders and phone calls. Just while typing this blog I got phone calls from 1.) the infant and toddlers program rep, 2.) the overnight nursing staffs' supervisor and 3.) the case manager for Leah's Medicaid.
Speaking of paperwork and red tape, I finally finished and submitted Leah's SSI application. Now I just have to wait for the paperwork to get here and call to schedule an appointment at the Social Security office. So I'll actually get a chance to leave the house for something - but it sure won't be for fun.
At least Leah knows how to relax:I went to reposition her in her chair last night so I took her blankets off of her to find her doing her typical stretched out starfish pose. She lays like this a lot - I guess it does look darn comfortable. Trying to burp her when she wants to do this is fun. "Light as a feather, stiff as a board".
There's also the 'relaxed starfish' pose, just a slight variation:
And yes, I will soon be putting clothes on the little girl. Fall is a-coming so we gotta get her used to having some clothes on that little body. It was hard to find clothes for her before with just EB, but now we have collar issues to keep in mind because of the trach. So her wardrobe is limited but nevertheless I will find soft, cotton, lace-free, frill-free, applique-free, zipper-free, tag-free, loosely collared, pink, preferably with kittens and bunnies and cutesy stereotypical baby-girl clothing for her.