apparently i've been living in denial
gosh, i feel like i'm posting a lot lately! sorry about that. it's just been a hectic few days.
today was a rude awakening. i have it all on the blog. but we found out in our family care planning meeting today that wren is expected to be in the nicu for at least 2 more months! AND she has ROP stage two zone two!her last exam was 2 weeks ago (the next one tomorrow) and the doc said she just had "immature eyes". i talked to the eye doc face to face and he didn't tell me. neither of her primary nurses knew either! and the attendings and fellows didn't let us know!
all this among other things. i'm really feeling it today. i just keep breaking down and crying! (i hate that!) and my husband is away at training for another 2 weeks! i've got amazing friends, but they just don't understand.
Re: apparently i've been living in denial
Sweetie, it's going to be OK. You and I are very similar (hippie moms with not wanting to vaccinate, wanting to breastfeed forever, cloth diapers, hating all the crap they add to our breastmilk, questioning all the meds they give). I struggle with all of the same stuff. It's really hard.
Stella has ROP stage 2 as well. It's from all of the oxygen. I really nag the nurses to keep her O2 down as much as possible. I don't feel comfortable when her sats get higher than 96. Is Wren a high-satter? It's hard to stay on top of it because when they turn her down too far, she drops like a lead weight & de-sats, has bradys, etc. I don't worry too much about the ROP though because it can be fixed with a laser surgery, you know? You have bigger things to worry about (I do too).
Stella will be 38 weeks tomorrow and she is still pretty far from coming home too. I don't see her coming home two weeks from tomorrow. She really struggles with bradying while taking bottles plus she's still on the high-flow canula which is drying out her sinuses & giving her bloody noses. But the thing with these little guys is that they really surprise you sometimes! Things just click and before you know it, she will be a totally different baby. This has happened many times with Stella. She was on the vent for a while & even had pneumonia & then had a round of injected steroids (yes, the ones that are proven to cause learning disabilities, but what can you do? They saved her life)--the steroids got her off the vent & onto the C-PAP. Then some time passed & before you knew it, she was on the canula! Sometimes it just takes a little time. If you are like me, you are starting to feel jealous towards the parents who take their babies home before you, even though Wren has been there longer.
As far as the vaccination stuff, I am not sure if you had a chance to read Dr. Sears' response to my vaccine questions yesterday? We have decided to do all of them before she is discharged besides the polio. It is invaluable to have her under the care of doctors & nurses that can manage any reactions she may have. And pertussis (part of DTAP), pneumococcal, & Hib are illnesses that could totally kill these tiny fragile babies. I wasn't going to do Hep B right now either but Dr. Sears said it's important since she's going to be in & out of the doctor's office alot in the next year. We are going to wait until she's back on the low flow canula before starting the vaccines & then we're going to space them out over several days so if she has a reaction, it will be easy to tell which one she is reacting to. I am not thrilled about them still (if she had been full term, I would not have vaccinated until she started school) but after all of the research, I am starting to understand that she genuinely needs them. Did you decide to do them before she is discharged?
As far as the CP, mental retardation, etc.--I think it was a bit inflammatory for your caregivers to be so blunt about all of those things. Anything is possible, but it's not worth it to "borrow trouble" right now, you know? You have to make it through today, then tomorrow, then the next day, etc. You can not be worrying about 3 years from now. I totally struggle with all of this too--I just want her to be OK, to be normal. All we can do is try our best & support her & advocate for her & work with her on the developmental things & see what happens. Our babies are like blank slates right now. Parents taking their babies home from the well baby nursery do not have a tenth of the information about their babies that we have about ours. We are fortunate to have the information available to us so we can do all of the important early intervention stuff, you know?
Stella has all the same things Wren has (ROP stage 2, chronic lung disease, will be going home on O2 & a monitor, will have a physical therapist, speech therapist, tons of pedi appts, etc.) so if you have any questions or just want to comiserate with me, I am here for you! If you would prefer to email, it's rthompson@stny.rr.com
And I am sorry your DH is away--that must be so hard. My DH really keeps me from checking myself into a mental hospital. I will be thinking of you!
One last thing: talk to Wren's nurses & see if any of them can connect you with a former NICU mom who had a baby with Wren's same problems. I have been in contact with lots of former NICU moms (some who had babies that almost died, were born at a pound, had tons of eye surgeries, etc.) and I can not tell you how nice it feels to hear them say "my baby is doing great! She is walking, talking, singing, jumping, etc.!" No, they are not perfect & do have delays, but we as parents will help them along & they will be fine. All we can do is help them be the best version of themselves.
I met a couple of one year olds yesterday that were in the NICU for months & months & they were totally adorable & perfect. So hang in there!
Your post brought back a ton of emotions for me from last summer. I can still remember so clearly one night in July when I came home and just bawled and bawled because I realized that even once Jake came home it wasn't going to "normal." I had focused so hard on him just coming home and thinking then everything would be "normal" and "like it should be." All I can say is really try to take it one day at a time and accept that this is your new normal, your new reality. It is completely overwhelming - especially when your mind runs wild with all the "what ifs" and possibilities. Focus on Wren's successes and keep being her advocate. If you want to see a "success story" you can check out our blog at https://walkersitb.blogspot.com.
awww, poor thing...the nicu is such a horrible roller coaster but there IS an end, I know it is hard to believe but it's true.
You should REALLY s tay on top of them about the ROP. My daughter was not a likely canditqte for it as her birth weight was well over 1kg and she barely had any oxygen. Her first exam said immature eyes, stage 0 so it was perfect and didn't worry about it but her follow up on 10 days later was stage 2 and one a week later (the day before we were supposed to go home!!!) she was a stage 3 bordeline 4 and had to have emergency laser surgery the following morning or the retina would have detach and she would have been blind...this ROP thing is no joke! The laser stops the damage but does not correct it though...
We just had her last followup appt 2 days ago and she is doing just fine.
Anyways, make sure to be on top of everyone because you are you child's best advocate...