My daughter was born at 27+3 weeks, about 7 weeks ago. We are still in the NICU. Congratulations on your baby although honestly I don't know how I felt about people saying that to me. It made it seem like the whole experience was about having a baby and it just didn't feel that way. It is hard to 'bond' and that's fine. This is our first baby. I am also in the medical field. Until she started going to breast it all felt like a crappy clinical experience. I feel much closer to her now but I still find it hard to consider myself a 'mother.' You have also been really through a lot physically yourself and that makes it all doubly hard. HELLP is a life-threatening and scary condition, it's one of the worst obstetrical conditions out there. You are already a survivor and you will survive this experience too.
Partially you will get through it because you have no choice but to get through it. I found that I had one or 2 people I could be really honest with (my husband and a good friend who is a NICU nurse at another hospital) and cry or go on and on about something. Eventually you say something often enough and you start to get a handle on that particular feeling, can figure out how to deal with it, then move on. I also had my family around, so they were good for distraction. Initially, we were in the NICU for a few hours, 2-3x/day and when we were out of it, we tried to do normal stuff and talk about all the petty crap you talk about with family. It's good to be distracted and remove your brain from the NICU as much as possible when you can, but hard to do when it's just you and your husband wallowing together. I found it helpful to not call, actually. If it makes you anxious to call there, consider how you would feel with just making it clear that the nurses should call you if anything at all worrisome happens. They know how to ride out the ups and downs of alarms. Feel reassured by their lack of concerns over them if you can.
Eventually you will stop feeling so scared/ sad/ whatever it is you are feeling and wonder, is it okay for me to feel fine when my baby is in the NICU? Yes, it is okay. Celebrate little things whenever you can. Take lots of pictures, even with CPAP they can still look really cute.
I am at rounds as much as possible, almost every day, and that helped to get a sense of what and why and what to expect. That being said, be careful with your expectations. I always feel questions like "how many days will be we be here?" or "how long until she can breastfeed?" are setting you up for heartbreak. The real answer is always "when the baby tells us she's ready." I found it more helpful to ask things like "what would our next step be with respiratory support?" or "what are the criteria for her starting feeds" or "at what gestational age do babies tend to start coordinating suck-swallow-breath." The hardest times for me were when the MDs would tell me something would happen and then it didn't, becuase I got my hopes up, when if left to my own devices I would have NEVER assumed that whatever was going to happen. I go through a lot of feelings of being angry, defensive, or critical of how nurses or MDs are doing stuff. Once I talk and talk and talk about how I'm feeling I can typically trace it back to feeling sad or frustrated. So when negative feelings towards other people surface, talk and work through them so you don't create an us-vs-them mentality in your head. You are all a team. If you are concerned about decisions they are making, ask questions, make suggestions, and ask for a second opinion. Do it respectfully and with an open mind and it will help improve your overall perceptions of the scene. If you come at the situation guns a-blazin, angry, and blaming (which is certainly how I felt at times) you won't be helping yourself. But if you come into it as a health care professional who just wants what's best for her baby, your team will work with you (ideally, hopefully, probably).
Don't compare your baby to others. They are all different. Feeling like your baby is doing "better" or "worse" is not helpful. Don't try to guage when your baby will do ___ by when the neighbor baby did it. Somedays you will win that competition but then somedays you will lose, so just don't let your mind compete.
When it comes time to hold your baby bring in a bathrobe. They have hospital gowns that we wear with the opening in the front for skin to skin and it sucks. I leak too much milk to want to wear my own clothes unbottoned. The bathrobe is easy, absorbant, and comfortable.
Take care of yourself, of course. Pump 8-12x/day like they say but give yourself a 6 hr stretch at night if you can. Some people don't becuase they need to increase their supply but many people can get away with it and you NEED the sleep. Take naps. Shut down sometimes. Lock yourself into a room and just read and pump and sleep and drink water and eat wonderful homemade desserts for an afternoon, as often as possible. Yes, your baby needs you there. But also, your baby is well cared for, needs a good milk supply, and is not helped by your sad, depressed, overwhelmed vibes. She is a fighter and doesn't want pity. So this lock-down time is totally for your baby's benefit. It is a huge way of helping your baby while helping yourself.
And for yor husband... well, that's a big topic too and maybe I will leave that for another day.
Right now I am going crazy becuase we are on the verge of going to the step-down/ transition unit but have been held up. It almost feels worse than the early days. But sort of in a good way. Like, I feel like I'm going crazy, but it's over small stuff. It's better to be all fired up about something that's not life threatening. But also it has become harder for me to watch all the babies around her go through everything she just went through. It's traumatic to watch the hard times over and over again played out all around her. But I don't have any great words of advise for you on this topic yet. I guess it's a good problem to have-- that's how I'm looking at it.
A good friend had twins prematurely due to HELLP, at the same hospital I'm at. She now has gorgeous 7 month old healthy boys. The trauma of the experience is still there, but it has its place in her life just like all experiences do. Someday I guess we will be able to say that too.
So, welcome to your baby. I guess not "congratulations' on your experience but your baby is certainly a fully formed little being who is doing her thing and is already impacting the world. I am sorry for your loss of the rest of your preganancy and your expected birth and newborn experiences. Stay strong for your journey. A quote my grandmother embroidered goes...
"go bravely on doing the daily duties
and trusting that as our day is,
so shall our stength be."
Oh, and PS-- for the "hope" part of it: the bottom line is that 27 week babies have great survival rates, despite the drama. Will she wear glasses, be short, use an inhaler, or have ADHD? Maybe. Who cares? No one is perfect, even if you're born at 40 weeks on the nose.
Edited by Ratchet - 9/29/11 at 10:49pm