july 30- amazing healing

so, if you read my last big post (here) then you know that wren was diagnosed with ROP, retinopathy of prematurity, stage 2, zone 2, two weeks ago. we were told that if it got any worse, we'd be looking at laser surgery.
here's some information on ROP. the diagram below shows the zones. as you can see, zones 1 & 2 have to have intervention. (whereas zone 3 can usually be left alone.)
today, the doctor said after her exam that he saw no signs of retinopathy! i'm just in shock. i know that god can do miracles. i know that god answers prayers. but to have something so...so... real happen in our lives. it was one way, now it's another... that's just... breath-taking! (of course, it could be that the doctor from the week prior wrote down the wrong information. that would be a MAJOR screw up.. but i guess it is within the realm of possibility.)

her eyes are all puffy from the exam

it seems like the past few years, the lord has definitely lowered the "hedge" around us and our families. (if you know in the book of job satan tells god that he has "put up a hedge" around job and blessed all the work of his hands- and that is why job serves him. he tells god to take that away, and that job will no longer serve him. job 1.8-10 charla standard version :)
anyway. it's just easy to feel like we've had more than our "fair" share of crap as of late. but, i'm reminded of god's answer to job, when job questioned the "justice" he was being denied. (why should bad things happen to good people...faithful people?) god answered, "where were you when i laid the earth's foundation? answer me if you understand." and "have you ever given orders to the morning? or shown the dawn its place..." "would you discredit my justice? would you condemn me to justify yourself?" job answered back "i know you can do all things, no plan of yours can be thwarted." (all that is around job 40-42ish.) wow! and that really sums up this life doesn't it? that with all the craziness that happens we can choose to take comfort in god and his plan, or blame him. either way, his will will be done.
rather than drowning in a pool of tears i've decidedly focused on the blessings that we've been given. (well, maybe i'm focusing on those things while swimming in a pool of tears.) and my, how we have been blessed! just as god has allowed us to have adversity in our lives, he has also taken care of our needs, and shown us mercy in so many ways. wren has not had NEC, IVH, she hasn't required extreme amounts of breathing helps, and now she doesn't have ROP. this isn't to say that she won't have problems, but, she's come this far without major hurdles. and that, in and of itself, is a blessing. (now she just needs to get to age 3! i guess i should start with age 0 first!) we also have been taken care of physically and financially. it seems like just when we've spent the last of our money on gas- random money comes our way!

the neonatologist over the nicu spoke with me today for quite some time about wren's development etc. she said that she can't guarantee that what we talked about yesterday won't happen... (she was in the meeting.) but she doesn't expect wren to have any of the severe issues. which at least makes me relax a little. yesterday was a trip! today was a little better. she also said that in her estimation that wren would probably go home in closer to a month. (THANK GOODNESS! but i'm not getting my hopes too high up there.) i talked to her a little more in depth about whether wren is behind. she said that the bout of infection that wren had for a week or so was really wasted time. when she was sick she wasn't developing her lungs at all. she said she's where she should be for having had that spell.

today katie was taking care of her. she did just fine. (yesterday she was having some reflux, really the first reflux of note that i've ever seen. she's also been having some issues with pooping. they think both of these could just be a reaction to being off feeds for a couple of days when she got the blood.) this evening she had a new nurse, she seems like a great lady, and was super caring to wren AND competent! what a combination! :)
wren weighed in at a whopping 3lbs 8oz last night.. she's still in the 10th percentile... but trending up!
i bought the car seat tonight. that was SOOO weird! it's the first big purchase we've made. i'm planning on picking up the co-sleeper this weekend. and finishing up her nook in our room this next week. this is the one i decided on:
i decided that i was going to carry her in a sling or wrap for a good portion of her baby time. lugging around the car seat, or dealing with the hassle of a stroller just seems like too much. especially since we're expecting that she'll be just around 5lbs when she comes home. (of course, i can kick myself later and buy either a universally adaptable stroller, or the britax one that goes with this seat.)
i also decided that i like cow print- who knew?

july 29- rude awakening

sorry for the delay in posting pictures. it is just a bit of a hassle for me... and i'm feeling a bit overwhelmed today.

what an adorable outfit! my favorite!

achoo! mom caught me mid-sneeze!

we had the family meeting today. (even though thadd was gone. and will be gone for roughly 2 more weeks.we'll be having these more frequently when he gets back.) apparently i was living in la la land. here are the cliff notes:

breathing-

• when can we go back up on nasal cannula sprints? ween down the cpap pressure? (from 6 to 5)
• when they see a trend in less oxygen requirement

• situation with lungs?
• expect her to be in the nicu at least 2 more months... possibly need to go home on oxygen.

feeds-

• when can we start back on the non-nutritive sucking?
• at the nurses discretion

• is it possible to breastfeed a feeding while sprinting? (since it seems she may need the cpap for a while longer?)
• yes. as she gets the non-nutritive sucking down, we can slowly add in a feeding while she sprints.

• when can we give her feeds by gravity? (right now she gets them over an hour.)
• they're going to start weening that down. she should start getting them over 30 minutes tomorrow.

overall health-

• why the repeated newborn screens? (the one they took today makes #4!)
• #3 had a processing problem. nothing with wren. they're only taking them when they've drawn blood for another reason- not heel sticking just for that.

• hematocrit issues?
• should resolve itself. but, by giving her the transfusion yesterday, they reset her clock. delaying her own production of red blood cells by a bit more time.

eyes-

• results so far?
• immature eyes. which we expect because she's immature- right?
• ROP stage 2 zone 2. are you shocked? did you read my last post on this issue and remember that the doctor told me JUST "immature eyes"? because he SURE did! and then none of the other doctors felt the need to pass on that information. neither of her primary nurses knew either.
  
• if her ROP gets any worse she will need laser surgery. no doubt. it needs to stay where it is or get better in order to avoid the laser.

vaccination-

• deferred schedule-
• they definitely didn't like it. and insisted that we get the shots before she leaves the NICU. i told them we had decided to wait until she got bigger. (they did confirm that the same dosage that is given to 15lb babies is given to 3lb babies. that's what the FDA and AAP recommend. so people do it.)
• the synagis is actually an antibody, not a preserved virus. so instead of basically infecting someone, and causing their body to make antibodies, they inject the antibody to start with. we've decided, since it is an antibody, and the risk of contracting RSV is so high, and the risk of serious side effects, that we will go ahead and give it to her. it is done monthly, and has to be done throughout the whole season.

post nicu- (this is the part i never should have asked about!)

• wren will probably need occupational therapy (OT), physical therapy (PT), and speech therapy (ST)
• later, the doctor mentioned her chronic lung disease (CLD). i'd never heard that she had it. one of the other attendings had said that he wouldn't say that she had it.. that was just a few weeks ago. :(
• she's at risk for problems related to ROP, strabismus, hearing loss, cerebral palsy, and some level of mental retardation. we should know by age 3 if she's out of the woods on these issues.
• the doctor told me outright that i shouldn't work. (not that i was going to, or want to, or considered it.) she said that having wren is going to be a full time job. between her therapy appointments (OT, PT, ST etc), and her pediatrician check-ups, and her developmental pediatrician check-ups, and her ophthalmologist/optometrist. not to mention what i will have to do with her at home in our "free" time. i can't be the diapering, feeding mom. i have to be the reading, diapering, feeding, teaching, challenging, talking, mom. she said that even children with "delays" can be bumped up by just having a strong parent involvement in therapy. (basically making our home life one big developmental playground for her.)
  
• we will be enrolled in army exceptional family member program. what i know about that i learned from google here.
• wren is eligible for state aid wherever we live due to her "special needs".
• they're going to do all the research for our upcoming moves to coordinate with tricare and find doctors and therapists ahead of time. they're also going to coordinate getting the synagis while we're home on leave.
  

so, that was my day. i broke down crying toward the end.. with all the talk of "special needs" and all the doctors and therapies... it was just too much. i don't know if i can do two more months... i just don't know.

on a good note. she is still a temperature rockstar. :) keeping her temp up in her open crib now. i'm so proud of her for doing so good with that. (if we could just get her off that stupid cpap!)

in her big girl crib! (i promise, in the picture above, she's really under all those beanie babies!)

we got to do the non-nutritive today. she latched! yay! she got some milk, but not much. (i pumped to "empty" beforehand.) it was the strangest feeling! for those of you nicu mommies reading this that haven't had the chance to put your baby to breast- keep pumping! it is totally worth it when they get to that point.
her oxygen needs haven't been bad at all! this morning she was in the high 20s. last night was great too. today on cannula we got her down to about 45, and had to put her back up to 50 for the last little bit.

please keep little wren in your prayers. i thought we were almost out of the woods... but she's got such a long road ahead.