Tuesday, May 27, 2014

the story of My Preemie and our journey in the N.I.C.U.


This is my story of our daughter's month-long stay in the Neonatal Intensive Care Unit.  She was born in her 33 week of gestation and they are not sure why she came early.  Next week she'll be 'out as long as she was in' (me, not the nicu) and I am finally ready to confront the pain in my heart surrounding her birth and hospital stay.  It took at least six months for me to be able to even go back and look at pictures of her in the hospital.   So if you have had a baby stay in the hospital as well, this could *trigger* painful and uncomfortable feelings for you and please proceed in caution.  You should also be aware I wrote this to get out all of my feelings surrounding this time, so it might come off too raw and angry at times.
As I wrote this, I felt like it just sounded like a pity-party.  And I guess in a way, it is.  I do feel sorry for myself.  It was an incredibly hard experience.  Of course, I am able to objectively say 'what matters is a healthy baby in the long run'.  But that doesn't change how difficult it was, how emotionally and physically taxing.  In all the long hours I spent alone at the hospital day after day, while holding my baby against my chest, or sitting with my hand on her back, I would just search the internet desperately trying to connect with other premie parents.  Reading absolutely everything I could on every aspect of premature infants. 
So, even if this does sound like a pity-party.  It's worth it to me, if one other mom or dad finds this while sitting in the hospital, tears streaming down their face, feeling so powerless and alone.



THE DELIVERY (the birthing story in full here)
I remember the nurses face.  It was filled with so much pity and genuine love. 'Oh honey, you can't have her' she told me.  I had just birthed my baby girl 6.5 weeks early and the second after she left my body, I lifted my dress past my chest and reached out for her.  The reality of going into early labor began to slowly set in (as much as it can when all that adrenaline and oxytocin are pumping through your body).  "What are you doing" I (yell?) at the doctor next who had gotten out the scissors to cut the cord "Stop! She needs all that blood."  He of course doesn't even acknowledge me, the screaming woman who's vagina he is elbows-deep in, but continues on.  Someone then explained that they had to hurry and get her on oxygen.  My baby is rushed to the corner of the room where the NICU staff is set up.  John picks up our screaming two year old, Redding, and follows the baby.
The nurse and my midwife stay by my side.  I'm not crying. I'm not even totally sad yet.  I'm in complete shock. "What day is it?" I ask the room, I have no idea what my baby's birthday is.  They tell me 'October 27th.'  Just hours earlier I was having a normal sunday afternoon with my family of three. Now we were four.  Her due date was December 13th.  I had not even made my birth plan yet. I'm not that crunchy ... I had not intended on my child watching me give birth.  I had set up for a friend to photograph it though, and another to video it, my best friend and my mom were supposed to be there.  It was supposed to be in the water! In my home! I was going to catch her myself!
Something cold jabs at my vulva "OUCH!" I yell.  Some strange nurse who was standing in the corner during my labor just staring was now trying to clean off my blood with a wet, cold wash rag.  "I'm sorry" I recoil "could you just warn me next time?"  My midwife didn't take it that calmly. Ha. She ripped the nurse a new one.  How dare she start touching my body without asking me first.  I mean really? Is my bloody vagina so offensive to you? Time to find a new job.

A nurse asks if we have a name yet.  This makes me smile 'Bernadette', I tell them.  They all coo accordingly as she is getting her matching bracelet to mine.  The NICU nurses walk her over to me on their way out the door, would you like to see her they ask (really? what kind of question is that? It's my baby, only moments ago she was part of MY body. GIVE. HER. TO. ME. NOW!)

'Who is this?' I think. This isn't what she's supposed to look like. Her eyes seemed sunk in and her nose and eyebrows jetted out too far. She was entirely way too small. Why wasn't she still in me? Why did this happen?  Before I had time to really look at her though, they were taking her away again (It was less than one minute that I got to hold her like that ^).  "John" I say so desperately, "GO WITH HER!" The room empties out.  Redding climbs in bed with me and we drink apple juice, my midwife begins filling out paperwork.  Here we are. Such a bizarre moment. I don't feel like I've had a baby. I don't feel like she's not with me. I don't know if I feel much of anything (adrenaline working overtime obviously).  I call my mother, I have absolutely no memory of this conversation though. I text my two best friends. I sit.
I remember John coming back very vividly because we both just look at each other "What the fuck" I say, almost laughing.  He repeats it to me. We stare at each other, maybe we were actually laughing.  We decide the best plan of action is for him to take Redding home, we've called a friend to come over and stay the night with him.  John's parents live 5 hours away and mine were on a vacation for the next month.  Looking back though, we should've just had the friend meet us at the hospital.  I shouldn't have been left alone, but I often pretend to be much stronger than I actually am.

After they leave, while the nurse is helping clean me up, the anxiety sets in. I want to see my baby. When we're getting ready to leave the Delivery room I notice that I have an IV in my arm.  "What is this for" I ask?  oh it's just some fluids she says... and pitocin. Pitocin? I immediately get angry.  I never consented to this. I try to stay calm as this is a nurse who has been incredibly kind to me.  She explains that it is often given to mothers who can not breastfeed right away to help the uterus contract. I ask if we can please just give my body a shot, especially since I'll begin pumping within the hour.  She agrees to take it out. But, I feel like this is typical of hospitals, to just assume your body won't be able to do the job without medical intervention. I hate hospitals. Hate them.



MY FIRST EXPERIENCE WITH THE NICU
As with many medical experiences, the nurses around you can really make or break it. This was really the case during our nicu experience, we had many many desensitized, short-tempered, unsympathetic nurses.  The worst though was probably the woman on our first night.  Luckily it was the only time I saw her during our stay, but her poor attitude had lasting effects over the next month.
As my l&d nurse was wheeling me to the NICU, I could feel that the adrenaline from the labor wearing off and I was needing my baby.  It's as if the cord was still in place and I could feel it pulling myself to her, the knot at the bottom of my stomach made the two minute wheel over to the nicu almost unbearable. I needed my baby and I needed her now.
When I first spotted her laying on her tummy, under the bright light with cords wrapped in her, out of her, and all around her I could feel my insides crack.  Just crack. My poor baby. This is not the way to enter this world. She is supposed to be warm and snug in my arms nuzzling to my breast.  Definitely not in this hospital room under fluorescent lights, smelling of antibacterial soap with words like 'laughter' written on the walls.  (Really? 'Laughter' st. davids? what a mean joke to play on all us tearful parents!)
As I ask this nurse questions about why she is on an antibiotic, why I wasn't able to refuse the eyedrops and what fluids were being put into her body, the nurse not-too-kindly explains to me that 'in the NICU mother's are guilty until proven innocent', which is also why they'll examine my placenta.  Great thing to tell new mothers who are already confused and trying desperately to wrap their heads around the fact that their body was flawed, unable to hold the baby for a full nine months.


Before I know it the l&d nurse told me it's time to go, that she needs to take me to my hospital room.  I have to say goodbye to my daughter again.  And it hurts far greater than any pain I've ever experienced in my thirty years of life. Far, far greater.
She wheels me to my room, helps me into the bed and leaves.  I am by myself. I am alone for at least an hour. I just sob. sob and sob. I am sad and hurt and confused and could really use a hug. or a friend. or my mom. But no one is there.
Quite serendipitously at this moment, one of my best mama friends calls me up to chat.  It was the first, and maybe to this day, the only time we've ever talked in the evening. She was such a comfort to me.
Whenever I am asked about Bernadettes birth, this is the first thing that comes to mind. Sitting alone in that hospital room, knowing my baby was being poked and pushed and pulled every which way and not only couldn't do anything about it, but couldn't even be next to her. I was broken. Absolutely broken.

There is a little detail I'd like to include in the story, mostly because it haunted out entire 24 days in the hospital.  Something you should know about me first though, I live in a constant state of foot-in-the-mouth.  I have a problem with speaking first, thinking second and it is always getting me into trouble.  I also have a sarcastic sense of humor. Ok, that being said, when John and I returned to the NICU later that night I scooted up next to Bernadette and started talking to her.  Who knows what all I said, we talked about her brother, the weather and I don't know what else.  However, I did tell her something along these lines "Man girl, you and I deserve a drink! What a day! Don't you worry, we'll be out of here soon and able to get a beer."  I would assume anybody around could pick up on my sarcasm.  But sure enough, the next day a doctor asked me if it was safe to give her my breastmilk, that some think there was heavy drinking during my pregnancy (yeah. just, yeah).  I was flabbergasted and confused and hurt.  It wouldn't have mattered too much. I knew the truth and my baby would show the truth.  But, it was an accusation that was printed up on Bernadette's daily chart. Every single day.  'Nurse suspected drinking during pregnancy, mother denies any alcohol consumption and placenta came up negative' ... or something like that. BUT STILL, for the rest of our stay every single nurse and doctor probably had a preconceived notion about me.  ouch. Just ouch. Yet another kick when down.









Dear Nurses and Doctors of St. David's NICU,
I forgive you.  I forgive you for each time you were too quick and rough while moving my precious four pound baby.  I forgive you for each time you couldn't find a vein and had to poke her over and over again (I can't imagine how hard that must be).  I forgive you for telling me discouragingly that my milk probably wouldn't come in and to just plan on using donor milk.  I forgive you for telling me I needed to use a nipple shield.  I forgive you for telling me 'It's been thirty minutes, you have to put her down now." I forgive you for giving my daughter annoying pet names like 'princess' and 'angel'.  I forgive you for accusing me of heavily drinking during my pregnancy just because of a joke I made. I forgive you for not knowing your NICU rules and telling me I couldn't bring my water inside and that I couldn't pump next to her bed (and I forgive you for your responses after I told you I could). I forgive you for talking about me and my beliefs behind my back.  I forgive you for making fun and laughing at me when I said if formula had to be added to my breastmilk, it must be organic.  I forgive you for then alluding that I was foolish when I decided to not let you add any formula to my breast milk.  I forgive you for making me sign a document actually saying I 'was not giving her every advantage I could' because I'm refusing formula. I forgive you for not allowing me to use natural weight gaining methods like coconut oil massage.  I forgive you for each time you told me 'I should just go home.'  I forgive you for putting her bed next to the circumcision room and making us listen to screams all day.  I forgive you for things that were out of your control, like calling her by my last name instead of her own.
I understand that this is your job and most of you have been doing it for many years so although you might love it, perhaps you have become desensitized to the delicate situation.  I understand that if you are too quick or too rough it is probably just out of habit and that you have many babies to tend to on your shift.  I definitely understand that you have seen many babies in the NICU because of alcohol or drugs, so you don't take joking about 'going out for a drink' lightly.  I understand that when you thought I was foolish for not choosing formula you were coming from a place of just-wanting-to-help in the only way you knew how.  
I understand that I look like a young mom with tattoos, who's father of her children is just "a boyfriend."  I understand that with that criteria I would be easy to judge. 
But, if you couldn't tell from watching us at the NICU hour after hour, only missing two feeding shifts every 24 hours, we are dedicated and educated parents. Parents who didn't take having a premature baby lightly.  Parents who did all the research we could get our hands on.  Parents who would rather just sit next to our baby's incubator, then be home comfortable in bed healing from giving birth.
I forgive you for everything. I am truly sorry that my NICU experience was so rough.  I'm sure you are all good people, doing the best you can at your job and I just rubbed y'all the wrong way. 
I forgive you. 
sincerely, andrea



The morning after she was born, I rush to the NICU after eating and pumping.  I'm so ready to see my baby. And they told me that if she was doing well I'd be able to hold her!!!  What they didn't say was there was a limit. 15 minutes every twelve hours. FIFTEEN MINUTES! Can you imagine?  But, you learn quickly in the NICU to take what you can get, smile and be grateful.  There are babies everywhere that aren't doing as well as yours. 
She was beautiful, but so swollen and puffy.  Because of all the swelling, she looked nothing like the baby I saw after delivery.  Is this my baby? Did she get switched? (John had to assure me that he watched them put the bracelet on, stayed with her on the walk across the hospital and it's without a doubt our baby).

Oh that Cpap-thing cut into her face.  Just a few weeks ago I was stopped at a red light and started absent mindlessly reading the advertisement on the truck in front of me.  It was for a medical supply company and said something about c-pap machines.  My body began having a physiological response just reading it.  I started shaking, felt like I couldn't breathe and was afraid I'd throw up.  I'm like that with many things that remind me of the NICU, it feels like some mild case of ptsd.  
There was also the first time I had to take her to the special-care clinic in the same hospital.  I had her in, and completely covered by my sling. I held onto her so tight.  Upon walking into the clinic and getting asked questions by the coarse medical staff, I started crying uncontrollably. Even once alone in the room with the kind doctor, I did not want to take her out of the sling.  I was irrationally terrified they were going to take my baby away from me again.




LEAVING THE HOSPITAL
Did you know that the nurses in the maternity ward are legally required to wheel you out of the hospital?  Well they are, even if you don't have a baby with you.  I sat on the curb in my wheel chair; empty arms, where a baby was supposed to be.  I waited for John to pull around the car.  To the right and left of me there were glowing new moms holding their sweet babies, husbands jumping out of cars to help put the new baby, balloons and flowers in the car.  I saw John, stood up, walked to our car, let myself in and we drove away.  I was utterly and completely empty as we drove away from our baby.  (yes, I have started crying while remembering and writing about this).

That evening our routine we would live in for the next month began.  We are so incredibly lucky to have John's parents who came into town the first week.  They did everything for Redding.  They fed him, dressed him, took him to parks, bathed him and put him to bed.  I didn't have to worry about a thing when it came to him.  Except for the fact that he didn't want to hug me anymore (super super sad face). I remember asking for a hug one day after getting home from the hospital, he said 'no! mimi!' and ran the other way to his grandmother.  Dammit kid! I know you're only twenty months, but can't you see your mother needs a hug!!!!  Having a baby in the NICU will put a strain on everyone in the family, no matter how small.

Communication with your partner is so SO important during this time.  You are both extremely tired, broken and angry (with no rational place to put that anger).  
During a fight the first week John and I both became clear that we were dealing with our overwhelming feelings differently.  He needed to unwind at the end of the day, by sitting on the couch, zoning out and being alone.  I needed to be held as I fell asleep, my body needed more physical comfort than I was getting (which makes sense as every thing in my body wanted to have a baby laying on it). After discovering this, we were both able to give the other what they needed.
Being understanding and not misplacing your anger on your spouse is huge. Man, i remember one night he left the hospital after his night shift at 1am. He stopped by a bar to get a drink and some food on the way home.  Not wanting to be at the hospital, but not ready to be home (so understandable right?!) Anyways, when he got home and told me, I just unleashed on him.  Oh I said such such mean things to him. Why? I feel so awful about it now! He is such a strong man! He was back at work. He was taking care of things with Redding and His parents.  He was taking care of me and he was still making it to the hospital for a multiple hours every day. 
So communicate! Because juggling all the responsibilities around the house, childcare, and overwhelming emotions is too much for any person.  As soon as john knew I needed more comfort, he held me all night every night while we slept. But I had to tell him what I needed first.




Pictured above is one of the few times we were able to go to the hospital together.  It was Johns first time to hold Bernadette (because when your baby is only able to be held a few minutes everyday, the mother needs to be the one holding her, for the sake of milk production).  It was also the night we started reading PeterPan to her, which she got to hear twice, because we both read it to her while there separately.  Can you imagine sitting in an uncomfortable chair with your feet up like that for hours every day right after giving birth?  
I really believe in the philosophy of 'mothering the mother,'  however there is no time for that if you have had a baby prematurely.  Within days you are hiking from the parking lot into the hospital.   I personally, am a ridiculous person and deal with my emotions by cleaning.  So three days after giving birth I was scrubbing the bathroom, bathing the dog and cleaning out the refrigerator.  Knowing how to ask for help would've come in handy during this time.





My dearest Bernadette,
I just want you to know, we never left you at the hospital for too long without us.  We had a rigid routine we were able to stick to for that month.  Your feeding schedule was 8:30/11:30/2:30/5:30 am&pm.  Each day we woke up early and after only one week leave, your father went back to work.  I,  after pumping and eating (and taking a plethora of vitamins) would drop your brother off at a playdate and race to the hospital to be there for your 8:30am feeding. I'd then stay and also do your 11:30a feeding (towards the end of your stay I'd nurse you, but at the beginning it was just holding you while you were tube-fed).  At about 1pm I'd go pick up your brother and take him home so we could both get naps.  Your papa would then leave work and head to the hospital at 2pm in order to bottle feed you for your next two feedings.  In between them, he would set up his laptop in the hospital cafeteria and work from there.  Quickly after your 5:30, he would have to leave the NICU as it was shift change from 6-7:30 and no parents were allowed inside.   It was during these couple hours that we would be able to spend some time together, your father, brother and I (It's also during this time I was able to take him trick-or-treating, guilt-free, only days after your birth).  We would eat dinner that some wonderful friend had made us and brought to our home.  I'd try to help put your brother to bed, but normally missed it as I raced back to the hospital for your 8:30 feeding.  I'd stay and read to you an hour or so afterwords, but try to be home by 10:30pm to go to bed.  Your Papa and I would have a quick conversation about how both you kids were doing as he left to go back up to the hospital for your 11:30pm feeding.  He'd stay up there holding you until after 1am.  We had to trust the sweet nurses to feed you at your 2:30am and 5:30am feedings. 
It sounds hectic and it was, but we didn't mind!  All we wanted was to be with you.  My life was rushing to be with you and that's ok.  I was never at peace unless I was at your side, my sweet sweet girl.   I wanted nothing more than to be there for you and I want you to know that I will be there for you for the rest of your life.  love, mama





MILK (bfing, pumping, formula etc)


Let's talk about milk for a second, shall we?
First off, I have to admit how lucky I am that it was my second child who was a preemie. I was already very comfortable with manipulating my breasts and nipples, hand expression and using a pump.  I was familiar with engorged breasts and how to deal with them and what to do if your supply starts dropping.  None of this was new territory to me ... I mean, I only had a three month break from breastfeeding.
I can't imagine having your first experience with breastmilk, be with a pump! How hard! Any mamas who couldn't nurse right away for whatever reason, I am so sorry and have the utmost respect for you!
It is such a weird and lonely thing, having to set your alarm clock for every 2-3 hours to wake up and pump during the night. Or to sit behind a curtain in the nursing room in the NICU with other new moms sitting behind other curtains. It is so heartbreaking to be told you need to use a nipple shield because your nipple is too big for their little mouth and you believe them, because you would do just about anything to just get your baby home.
Like I mentioned above in my letter to the NICU staff, the decision to not add formula to my milk was a pretty all-consuming issue.  One that I read and read  about and was very confident in.  But, it doesn't matter how confident you are, if you have a doctor laugh at you, you will feel ridiculous.  I wouldn't engage with this doctor after I had made my decision though.  I knew my decision and I didn't want to get into a debate about it, so I just kept on saying over and over "Her father and I have decided to only give her breastmilk" she would come back with "but if she could have a few extra IQ points, wouldn't you want her to?" In which I would again just respond calmly, with angry, hot tears streaming down my face "her father and I have decided to only give her breastmilk."  I felt so helpless and alone.   But I stuck to my guns, even when she stomped (yes the doctor stomped) out of my curtain and back in holding a waiver.  The waiver said I was going against the hospitals best judgment and I knowingly chose not to give my daughter the best chance.  I signed it and felt utterly defeated. But, knew I couldn't have lived with myself if not.

For anyone else struggling with this decision, or wondering why they would try to add similac to my daughters milk, I will explain.  Many times they add formula to women's breastmilk for a few reasons. First to help plump them up faster but more importantly to give them the extra protein and calcium for optimal brain and bone growth (because weeks 34-40 are so crucial for brain growth in utero, and there is no way they are going to get the nutrients on the outside that they would be on the inside).  However, research has shown that when a woman has a baby prematurely, her milk will become tailored to that situation (having a composition similar to colostrum for longer).  I understood all of this, and of course I wanted to give my daughter optimal growth. But no matter how hard I tried, I just could not get on board with formula.  Similac and even most organic formulas are not GMO free, which I had a huge problem with.  They are also linking NEC, a sometimes fatal, gastrointestinal disease to the use of formulas with preemies (although it is uncommon).  I begged the hospital to let us try natural weight gaining methods, such as a mixture of different oils (olive, coconut etc).  Even coconut oil massages have been shown to have phenomenal results for preemies.  But because of hospital rules I wasn't allowed to give her anything else.  I wasn't even allowed to bring coconut oil into the NICU to rub onto her body!  
Mostly what I did though, was listen to my instincts.  I had the strongest gut response that just said 'No' to the formula.  I actually let them give it to her for about 24 hours (with an organic formula I went out and bought myself), but it was tearing me up, which is why I finally refused.  I am not saying that this is the right decision for you and your baby! (by any ANY means!!!)  But, what I am saying is that hospitals have a way in which they do things. And they do them that way because it works ... for the majority.  But I believe it is your job as a parent to be open-minded, do your own research and listen to your own instincts.  Hopefully if you have a good medical team they will work with you.


Since what they were looking at was her growth chart (which I should mention was perfect, we are talking about a 5 pound baby gaining at least 1/2 an ounce a day), I figured I'd help her gain weight faster.  You see that picture above, right? I was pumping about four bottles to every one that she needed (this is because on the day my milk came in I started pumping every three hours and I never slowed down.  It was important to me to keep up my supply).  SO, I would scrape the cream off the other four bottles and add it to the one I was taking in.  If the goal was to get her gaining more faster, this would surely help.  I kept this a secret from all but one nurse at the hospital.  Because of our similar views on nutrition, I found an ally in this nurse.  She really enabled me to trust my gut when it came to my daughter.  
Beena, I will never forget you for the empowerment you gave me as a mother.  I can't thank you enough, just seeing you in the NICU was a comfort to me.

Whenever I am on the road now and someone passes me speeding and swerving, I think twice before judging.  This person could be racing to the hospital terrified they are going to miss the chance to breastfeed their baby. 
I remember one day towards the end of our hospital stay, I left the hospital, told the nurse I was running to the store and would be back to nurse her for her next feeding.  However when I returned, only five minutes late, I walked in to her being bottle fed.  Actually not only was she being bottle fed, but the nurse wasn't holding her correctly AND using a regular nipple (not slow-flow).  I was livid.  LIVID.  This was the only day I lost my temper with a nurse.  Through my tears and clinched teeth, I reminded her that I said I'd be back, and didn't she notice the HUGE green note in her charts saying to only use a 'slow-flow' nipple?  The poor nurse apologized profusely.  As soon as I had Bernadette in my arms, my whole being relaxed and I realized I owed this poor nurse an apology too.  Upon doing it, she sat with me and we talked for a long time, her reassuring me that I had not been rude to her, and reminding me of how much stress I was under.  
You see, every interaction I had at the hospital wasn't bad, I just had to give the nurses time and a little understanding (as I am SURE they did with me also).
I remember disliking one young nurse, I can't remember why anymore.  However after one night shift she started telling me what a cuddle-bug my baby was and how when she was finished bottle-feeding her, she was able to just hold and rock her for twenty minutes.  Man, did that change my opinion of her!  She quickly became one of my favorites and I'd hope with all my being that she would be working in the evenings when I came in.  That's all it is really, you want nurses that will treat your baby like what they are ... the most important thing in the entire world. 





HOW SWEET IT IS

Our NICU experience, like most, is filled with sadness, frustration, anger, fear and loneliness.  Through all that though, you must remember (I must remember), that there was a new baby.  My perfect and beautiful daughter.  So although I was an emotional roller coaster dodging my fear, I was also filled with immense joy.  I had this gorgeous gorgeous girl.  Holding her made my heart content.  Even though it often felt like she belonged to the hospital, she didn't.  She belonged to me.  She was mine and I could hold her and kiss her and love her as much as I was allowed. And when I wasn't, I could sit next to her, stare at her and read to her.  Because she needed me and I needed her.  My voice and my smell were the only things she knew in the whole world.
The amount my voice comforted her, comforted me.  The first few weeks she was alive, I noticed anytime I talked soothingly to her or sang, she would calm down.  I had a nurse mention how remarkable it was watching my singing calm her down while they were searching for a new vein one day (quite the traumatic experience for a mama).  
I always sang the same song.  It is quite a strange song to sing to a baby, but for some reason it was what was stuck in my head. 'Oh Yoko' by John Lennon, it's a simple and lovely song.  Because the lyrics are about how his love will turn her on I changed the words and sang it to her.

In the middle of a bath, in the middle of your bath I call your name
Oh Birdie
Oh Birdie
My love will bring you home
In the middle of a change, in the middle of your change I call your name
Oh Birdie
Oh Birdie
My love will bring you home







IT JUST SUCKS
Here is the bottom line of having a baby in the NICU, it just sucks. And only other NICU parents will ever understand the frustrating things about it:
Having to go through ten minutes of hand washing, scrubbing, trimming and picking every time you go back into the NICU.
Having a jumble of cords and tubes to arrange each time you move your baby, pick up your baby, or switch breasts while nursing your baby.
Being anxious every moment you're not with your baby.
Holding your baby staring at the machines she is hooked to for hour upon hour absolutely terrified of any little dip in heart rate.
Having to set an alarm over night to wake up and pump milk.
Having to look at a picture you took of your baby on your phone in order to get your milk to let down.
Walking into the hospital each morning and having a nurse tell you how your baby did overnight.
Having the tiniest little changes, for better or for worst become monumental.
Being completely powerless.  Not having any control on how long your baby will be in the hospital.  All you can do is wait.
Going through the most painful experience of your life and having none of your closest friends or family there with you.
Feeling unjustified in your anger, because there are so many babies that aren't doing as well as yours.
It. just. sucks.
and you know what?  that's ok.  Let it suck. Let your heart hurt. Cry when you need to cry. Scream when you need to scream Because you've got to find some way to get the anger out! When there is a baby that needs you to be strong, sturdy and loving, there is no room for anger!

I remember one of the best days during our NICU stay was a day I listened to 'Sweet Jane' on the drive up to the hospital.  I listened to it on repeat, with the windows down and literally screamed every single lyric.  I don't know why this song was so comforting but it was. I just yelled it and yelled  it.  By the time I got to the hospital my voice was horse, but it was like a million pounds were lifted off my shoulders.

Sweet Jane by The Velvet Underground on Grooveshark





LEAVING THE NICU
The closer we got to the end of our nicu stay, the less I was irrationally angry and the more I was able to accept our time there.  I was able to smile at the women who worked at the front desk (even when I wasn't smiled back at).  I wast was able to connect with other parents, which was helpful beyond words.  I was able to be at peace with whatever the nurses thought of me and I think in turn, they realized I was one of those moms who just wasn't going away.  A rocking chair lived by my baby's incubator.
In order for a baby to leave the NICU they need to be able to do 3 things.  Maintain their temperature,   take all feedings by mouth and go at least 5 days with a healthy heart rate and breathing pattern (this is often referred to as the A's & B's for Apnea and Bradycardia).  With Bernadette, her whole stay felt like a game of 'wack the mole.'  As soon as we had one of them in the bag, another would start acting up.  
I'm sure every other NICU parent knows the near panic attack of walking into the NICU each morning and going to check their baby's chart to see if they made it through the night without an Apnea.  Especially if that's the last thing you're waiting for.  If your baby can maintain their temperature and are taking all feedings by mouth, it's just so hard.  But, breathing normally (as well as maintaining temperature) just comes with age and there is nothing you can do but patiently wait for your baby. 
One of my positive memories from the NICU was saying goodbye to my baby each night.  As difficult as it was to leave her, we really had a nice routine.  I would swaddle her up warmly making sure she was asleep.  I would give her a pep-talk-type-thing... maybe it was more like praying over her? I don't know.  But, I'd put one hand on her head and the other on her chest then remind her what a great job she was doing. I'd tell her she could take her time, that we are patiently waiting for her. I'd remind her how she is loved unconditionally.  I think I would even tell her that she would breathe steadily all night.  Doing this would really put my mind and body at ease, so I could go home and take care of myself over night.

I was on my way home from the hospital for lunch when I got the call.  She passed her sleep test and was ready to leave the hospital.  Waiting the 40 minutes for John to get home from work was probably the longest 40 minutes of my life!  Everything was wonderful.  Well, that's a lie.  But honestly I didn't care about anything, in moments that girl was all mine.  I didn't even cry when the nurse told me I couldn't even hold her out of the hospital (which I find absolutely ridiculous).  I had to  walk next to a nurse who was cradling MY baby.  But, I wouldn't let it bother me, because in just moments I would be cuddled up next to her in my own bed.  I would be able to breastfeed her on demand.  She would be able to meet her big brother.  I would have my whole family under one roof! This was the best day of my life.






If you've gotten this far, thank you.  I had to take my girlfriend's advice (above ^) and get it out, by sharing my experience.  I could't let any frustration or anger fester inside of me any longer.  I have two beautiful kids, a phenomenal partner and myself that deserve that space in my heart.

There is one thing that Bernadette's hospital stay helped me to realize. I am one Strong ass woman!
The NICU taught me what kind of mother I want to be to my children.  It taught me that I am an advocate for my children so to speak out, loudly and clearly.  To trust my heart and my instincts.  To trust my children and their process and let it mold me into the woman I'm supposed to be.
I am thankful for this as trying as it was.
Although Birdie and I didn't get the traditional mother & newborn bonding rituals, our NICU experience bonded us together more deeply then I could ever imagine.  And for that I am grateful.

instagram photos taken a few days apart





OUR NICU JOURNEY THROUGH PICTURES



Thank you St. Davids for keeping my daughter alive and taking such good care of her, even when it clashed with my beliefs and personality.
Thank you nurse Emily for taking the time to go to that premature-baby conference you told me about. Thank you for being so gentle with her and with me. And thank you for requesting to be with Bernadette anytime you were on shift. Your sweet soul and soft voice was just what I needed.
Thank you to the nurse who wore the crocs and would cuddle Bernadette after you fed her.
Thank you nurse Beena for supporting me and empowering me as a mother.
Thank you nurse Melissa for being filled with so much understanding and love.
Thank you to my girls for having a craft night the day after Bernadette was born and making us all those beautiful gifts, then bringing them up to the hospital.  You'll never know how many times I read those notes you wrote her, that I kept taped to her Isolette, during her hospital stay.
Thank you to my mama-friends for watching Redding when I needed and everything else y'all do for me on a daily bases.
Thank you to all our lovely friends who took the time to make us dinner.
Thank you to my in-laws for dropping everything and getting in the car the moment you found out I was in labor.  Thank you for loving me and my children unconditionally.  Thank you for not being offending when I angrily cleaned the house banging and crying.  Thank you for all the things you did for us that I don't even know about.



Thank you Bernadette for being such a fighter. I look forward to spending the rest of my life fighting along beside you.
love, andrea
my preemie on her 6 month birthday


RESOURCES FOR PARENTS OF PREEMIES:
Breastmilk for Preemies Group
Premature baby book
Kellymom - preemies resources
LLL - preemies resources



20 comments:

  1. There are so many things I want to say. Thank you for sharing your experience. As I read your story, I had moments where I was filled with rage (um, when you were told "mothers are guilty until proven innocent"...OMG, I just about flipped!). Then moments of tears (the pictures--she's just beautiful in every single one. your words, talking about being a fighter.) I'm a new mother and my baby was in NICU (very short period of time) but I had all the feelings you described. Ha, I remember setting alarms to go feed Laina, too. And then we co-slept for about 4 months (still kinda do) and I love the ease of rolling over and she can just go to town till her little heart is content! And yes, we ARE our children's advocate. It's the most awesome responsibility ever. Ever! You have did an amazing job and I know your journey here on out will continue to be beautiful and authentic in its own way. Bernadette came early, but what you gave her while she was inside you was amazing and helped her get through NICU. Your body did exactly what it was supposed to! I could write more, but I just wanted to say thank you for sharing and I look forward to reading more!
    PS: TOTALLY impressed with your freezer stash of breastmilk! And if you have tips for when supply dips, please let me know! My baby has been EBF since birth (4.5 months so far) and my supply is dipping and I'm kinda freaking out. much love, xoxo Dianna

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    1. dianna! yes! ... girl I still cosleep with her! (and did my son for 11 months). It's so comforting knowing there are other mamas out there that know the pain of having your child stay in the hospital.
      thank you so much for your comment, having this support is so important to me! love love love!

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  2. Awww, thanks for sharing your story. Made me tear up.

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    1. thank you sweetie for reading it!

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  3. i can relate to almost everything you said, as another mama to a 33weeker.
    it can take a long time to be able to put in to words the things you went through, or even be ready to talk about it. & it never really leaves you. you accept it all, and make somewhat of peace, but it is something that stays with you & reminds you how strong your little one is. nobody will ever understand what you've been through, i've found, other than a nicu mama - we are all united by the same things. thanks for writing so honestly; not easy, i am sure! but good for your healing.

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    1. yes. just yes. so much love to you and your little one.

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  4. I am a long time lurker but had to break out of the shadows to say that this story was beautiful and heartwrenching and powerful and empowering and you are an AMAZING Momma!!! Thank you so much for sharing such an intimate time in your life!!!

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    1. THANK YOU! ... and I don't think it's lurking when it's a blog ;) ... or I hope not, or else I am a HUGE lurker as well.
      I really appreciate your kind words!

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  5. I loved reading this! which was so powerful it brought me to tears and me feel a rollercoaster of emotions which really broke through from reading your story. Sending love and positive hugs your way and I think has really taught me a lesson today.
    thank you.
    Mum of 19 month old Eva, and 26 weeks pregnant with baby Isla right now.

    www.cr8v-design.blogspot.co.uk

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    1. than you so much for your comment! I hope your pregnancy is going well! I really do appreciate the support. (and look forward to checking out your blog!)
      a

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    2. you are welcome, i've been reading your blog since the beginning and love how its ever evolving. Pregnancy going really well, easier second time round! ;) xx

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  6. i felt a lot of awe and heart-wrenching while reading this. i can't imagine going through the experience of having a preemie in the NICU, for a month no less, and i just wanted you to know that my heart hurt with you and now rejoices with you for the beautiful, amazing, completely wonderful baby girl you have. i love her (and you). :)

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    1. thanks becca! It was awful, but something writing about has strangely made me shed-off. I am so thankful for her. AND friends (even those far away) :)

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  7. ♥ Thanks for the full story ♥

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  8. Oh Andrea, your family's story hits so close to home. I admire your strength and ability to write so eloquently about your experience. I am still reeling from our horrible hospital stay and your words of forgiveness (especially to a terrible hospital staff/doctors) are so inspiring. Thank you for sharing.

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    1. oh goodness, thank you. although I definitely don't feel like it was eloquent! Thank you for your comment, they were helpful each time I thought 'take that post down it doesn't belong here'. I appreciate you!!! <3

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  9. Reading your story brought tears to my eyes. You are an amazingly strong woman and such an inspiration for always standing up for your beliefs and your daughter. <3

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    1. oh thank you! My hope is that I will always be able to stand up for her!

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  10. Yes, I relate to every feeling here. My seventh child (after 6 perfect, natural home births) was a preemie. My water started leaking at around 18 weeks, broke totally at 21, and I managed to stay pregnant another 6 weeks. He was born at 27 weeks at 2 pounds, 5 ounces. He's 8 months adjusted (11 actual) now and yes, it's been the scariest time of my life.

    Thanks for sharing your story mama!

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