Unexpected Preemie HELP

[Amesbnf]

My first pregnancy was going well until the beginning of this month (Sept 4) when I started having shortness of breath and headaches. I was admitted 3 different times over one week with high blood pressure. I was then transferred to a large pediatric hospital in our province and ended up having to have an emergency C section due to the baby not getting enough blood flow to the placenta. (I have since been diagnosed with HELLP and pre eclampsia)  Lillian "Lily" Evelyn was born Sept 13, 2011 at 1lb 9 oz. 27 weeks gestation.

This has been a complete whirlwind, as I am sure it has been for many others in this situation. Lily has so far not been intubated (CPAP only) and has had one blood transfusion, and a few lumbar punctures. the past few days she has been having very very frequent (sometimes non stop) brady and apnea spells. The drs can't find a reason for it. No infection, no fungal infection either.

Anyways, I am just writing this because my husband and I have NO idea how to deal with any of this. I am in the medical profession which sometimes makes it worse because I know a little more than my husband. One minute we are crying, the next we are hopeful. We are both having trouble attaching to her because we have been unable to hold her. The fear is so large and always there. With every phone call to the NICU, with every time we step into the NICU and hope her alarms aren't going off.

What can we do to get through this? How do we find a little strength and hope? If anyone has any suggestions or has been through the same, please feel free to write. Thanks for reading.

[Ratchet]

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

[Ratchet]

my daughter...

Aug 9th, shortly after birth

Sept 18th

[Adaline'sMama]

You can get through this, Im sure it is really hard.


Ratchet,
Your baby is SO adorable! My little brother was born at 26 weeks when I was 8, and I have pretty vivid memories of how cute he looked in the NICU. What a great hat!

[jkpmomtoboys]

Welcome to the preemie forum.  My 11 year old ds was a 29 weeker but I remember what it was like as if it was yesterday.

First, try to get some sleep and heal.  It can be pretty awful having a baby in the NICU (we were there for 50 days) but one of the "benefits" is that it gives you a chance to heal your body and get some sleep before the baby comes home.

Second, be there as much as you want to be there.  Don't feel guilty about the time you are not.  I was at the hospital every day for 50 days, 12 hours a day (I did the 7 to 7 shift with the day nurses).  One day my car wouldn't start and I was, quite frankly, relieved that I could take a break because I simply could not get there.  Take your breaks. 

Third, it's ok if you don't feel like a "mom".  I didn't feel like a mom for months.  I felt like a doctor, a caregiver, a diaper changer, a nurse, but never a mom.  One of my friends felt so sorry for me because I didn't feel like a mom but you have a lifetime to bond.  Really.  Bonding comes for many of us with every day, little by little, as opposed to a tidal wave.  Cut yourself a break. ;)

Fourth, get to know your social worker in the NICU.  She (he) is your best friend there - our social worker helped me make appointments with specialists, gave me information, helped me navigate the system and let me cry on her shoulder during the hard days...really a lifesaver in so many ways...

Fifth, your baby will go home.  And grow up.  And do great.  Is there a wall of NICU graduates in your NICU?  I used to sit and stare at the wall, willing my baby to be on it.  And he was eventually.  And so will yours be.

Sixth, know that likely you and your husband will be experiencing this traumatic experience differently because you are different people.  That's ok.  You're different people.  One way is not better than another.  You are both trying to cope.  Cope together rather than apart.  Lean on each other.  One of my favorite NICU memories (I know - is there such a thing?) is when dh and I would bring the Sunday paper into the hospital and read it and visit ds.  I don't know why that comes to mind.  The normalcy?  The togetherness?  Find your spaces of normal wherever you can...

Feel free to email me ANYTIME.  This experience will change you.  It will change your dh.  It will become a part of you and never leave you, as I am discovering with tears in my eyes 11 years later.  But you will get through this.  Everyone has something they have to deal with in this life and this is yours.  It stinks.  But you will be a better parent as a result.  You will be stronger as a result.  You will be a better, more empathetic person as a result.  I know I am.

Oh and don't let people tell you how to feel.  They are well-meaning but no one and I mean NO ONE who has not had a preemie knows what this is like.  I politely told friends to "f&*k off" on a regular basis.  Whatever.

Hugs to you. 

[mipsy6]

jkpmomtoboys' advice is RIGHT on.

I had a 23 weeker (yes, it happens) in Feb 2010. He was 1lb 9oz like your daughter. Now, he is big (very big), healthy and very happy 19-month-old. Sometimes it's hard for me to believe how tiny he was when he was born, and I was there.

It sounds like your daughter is doing great so far. Not being on the vent is a BIG deal. My son was on the vent for a looooong time. Hopefully she'll keep growing and getting stronger and your time in the NICU won't be too long.

It's REALLY hard, though. Go easy on yourself. I don't think I realized how exhausted and fragile I was while my son was in the hospital, but looking back now I'm shocked at photos. My advice, besides seconding jkp's advice, is...

Let people help you, and tell them how they can help. I did not eat well when I was going through the NICU experience, partly because I was so tired and stressed. You need food, especially if you're pumping for your baby--which I recommend, if you can do it because it gives you a way to "help." Let your friends bring you food, and make sure to eat it. If they offer to do laundry or clean your house a little, let them do it. Sometimes it's hard to accept help, but what you're going through is really hard and you deserve a break on chores.

Try to ignore the alarms. All NICU babies, especially ones so small as our kids, brady a LOT. It's very common and doesn't mean they won't grow up to be big, healthy kids. The good thing about the alarms is that the nurses know exactly how to react to them to make your baby better. I know it's really tough not to look at the monitors, but try to ignore them as much as you can.

And you will bond with your baby, but it may not really happen until she comes home. But don't worry about that. Right now, you can focus on advocating for her and taking care of yourself. Once you're home and away from the beeping and the craziness of the NICU, you can hold and cuddle and nurse her and you'll fall in love like you expected to. Right now, your heart is protecting itself, and that's completely understandable and reasonable. I definitely didn't bond with my son right away, but I couldn't possibly love him any more now. We bonded some in the NICU, but we definitely connected a lot more when he came home. (Don't forget, when she comes home she'll still probably be a "newborn" by her adjusted age--so this time in the NICU is the time she'd have been in your belly, not time you're missing from her newborn stage. You'll still get that at home.)

There will be things that happen that freak you out and knock you off your feet with fear. You can't prepare for that, but try to be hopeful. Medical technology is amazing and NICU nurses and doctors are SO skilled. They have a very close eye on your baby and they will do everything they can to get her out of there unscathed.

Right now, my advice is to lean on your support system and do what you can.

Oh, and stay off the Internet! Do not research preemie problems if you can help it. It will only make you crazy. I know. I've been there.

[twinpossible]

My twins were 29 week babies. The NICU was one of the hardest experiences of my life and they were there for 11 weeks. My advice is to only listen to ONE doctor and ONE nurse, everyone has their ideas and bias, their constant contradictions were driving me crazy! Once I picked a handful of people to talk to my nerves when down. I would also suggest being there as much as possible. It is really draining to be in the NICU but the baby does so much better when you are there. Hope comes in the small things, I set up small photo shoots (my avatar is a picture from the NICU) and I constantly signed family in to visit and sit with me. I had to believe that they were fine at all times and kept my mind positive, if I stayed calm I noticed the girls stayed calm as well. It DOES get better. Keep your head up and let the tears come when they need to. Love to you and the little one.

[squeekybuddha]

My daughter was born at 27 weeks due to me having HELLP as well. She was just 1 pound, 6 ounces. We were in the NICU for 98 days, they were the worst days of my life BUT it got easier with time and was like a dream once we were home. She had RSV and ROP while in the NICU. The complications of RSV kept her on a vent for a majority of those 98 days and the ROP required laser surgery. I rarely got to hold her as she was so delicate and hooked up to SO many tubes and machines. She had 4 cracked ribs, a brain bleed, and so many other things that I have a hard time remembering them all now. All of that to say that she will be 3 years old in just two short weeks and is a HEALTHLY, happy, loving little girl who is more closely bonded with me than I could ever imagine. It will be hard. You will laugh, you will cry, you will feel like you are losing your mind, but just continue to love her, your partner, and yourself and you will get through it. 

Maggie at just 4 days.

Maggie today. She's the one without the underbite. :)