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.

july 13- sprinting

wow... what a day. and now it's 1am and i haven't pumped and i feel obligated to do an update! i have so much to share and need to get to bed. so here's an overview:

-she's having her 3rd newborn screen. abnormal adrenal this time. the thyroid and abnormal protein came back ok on the second one. the doc says that they use term infant standards, so it's normal that she'll be off. my question: why do they keep doing a test, using standards for older babies, knowing that she will fail? at least it's only an extra heel stick every 3 weeks or so.

-her twice weekly test came back fine. but her crit is down from 33 to 30. the last time she got a transfusion she was at 20! i'm not sure if they'll let her get quite so low again...

-she does have an eye exam coming up soon. this week i think. no ROP, no ROP, no ROP, stop!

-they decided during rounds to put her on 2, 2 hour sprints a day! woo-hoo! go baby bird!

- they decided to lower her cpap air pressures to 5. (from 6)

-during the first sprint today the nurse put her on nasal canula for about 45 seconds and decided that she "failed".. she told the doc and he said that she could try again tomorrow. things to keep in mind: she took off the cpap, and situated the canula without giving her any oxygen, causing her to desat. she had the canula set on only 50% oxygen at 2liters. the 2liters is pretty high, but the 50 isn't that much when she's been in the 30s on the cpap. yesterday she was started at 100% and the nurse weened her down to the 30-40 range.(and she did well for an hour and a half, and probably could have gone longer.) she also did all this while wren was having a poop. i said "it looks like she's pooping". and "she usually desats when she poops". and she still decided to change her mask right then. :/ grr. i hate when they don't really give her a chance. i guess they all have their own reasons why. this nurse said "well, it's really no rush. you know she's going to be in here for a while anyway. there's no need to make it hard for her." and while i understand these things, lots of other things come into play.. like eating! she can't breastfeed until she's on the canula for a while and they let her have practice at it. and she'll gain weight when her feedings get right. and as she gets bigger her lungs will do better. etc. etc. etc. also, there's just the mommy in me who doesn't want to see her "failed" without the opportunity to try. so, tomorrow, i'm going to be telling them exactly how to do it. i can't believe, yet again, how much of this is subjective.

-the nurse raised her cpap from 5 back to 6. "she was having more desats on 5". well, only the good lord knows how long she let her stay at 5! 45 seconds? hehe. i guess i'm just being catty now. upon questioning, she replied "they were revolving (she fixed them herself without intervention), and they weren't that bad". then why was it changed? sidenote: the nurse was SUPER sweet and i really got along with her well. i just don't think she should be able to undo progress without any oversight. or any of them for that matter. i wish the doctors didn't just listen to what they say and take it as gospel. i was there for HOURS today (while thadd took his parents to pearl harbor) and she didn't have many desats at all while her pressures were reading 4! literally, they read about 4 the entire time i was there and her sats were fine.

-tonight mim held and she did awesome! she sated 100% almost the whole time and got weened down to 30%! it was hard for us to leave with her so snuggled in and doing well. but it was SO late...

-i got to comfort my little bird for the first time today. when i was going to hold her she started really throwing a bit of a tantrum. flailing arms, crying, the whole bit. i held her, (kangaroo, of course), rocked, and rubbed her back and she cooed and drifted off to sleep. it was amazing!!!

i think i'm actually starting to bond with wren in a way i didn't at first. i don't know if term mommies can relate. (maybe you can?) or maybe even late preemies... but having a 1ish pound baby with all sorts of possibilities for complications... that you can't hold. i guess that really had an impact on my ability to bond with her. i don't know if she feels the same way... sheesh. hadn't thought of that until i just wrote it. anyway, the past week or so i've really felt differently. i really WANT to hold her, to cuddle with her, to nap with her, to care for her, in a way that i sort of faked before. (i know, i'm terrible. but its a strange time... i promise.) i don't know if it comes from guilt, fear, depression, or what... people would reference me as "mommy" or "momma" and i just didn't feel it. as much as we wanted her and tried to have her and all that- i just wasn't a mother. i'm not sure if i am yet- but i'm getting there. i love her more and more every day.