An update on the babies’ first day: They were transferred to a bigger hospital with a top level NICU and were both on vents with low oxygen settings, which is a good thing. They seem to be stable. Lauren apparently sounds exhausted.
As for me, I am feeling better today thank you, yesterday was a very bad day. Very bad.
A friend of mine wrote such an eloquent post on our private board about how she felt when her little one was NICU. I could have written these words myself, I asked if she would mind if I shared it with you.
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I have been battling horrifying flashbacks all night and all day. I tell my self a thousand times an hour that this is not about me, it is about Lauren. This is not happening to me, it is happening to her.
More than anything, I want to be in that hospital room with her. I want to be the person who understands what it feels like to have critically ill children in the NICU. I want her to be able to say and do anything she needs to because she knows that I understand.
Life in the hospital with a baby or babies in the NICU is hard. Beyond that really, it requires super human strength not to give into the pain and fear.
Surrounded by healthy babies and nursing moms, the feeling of despair threatens to overwhelm. You want desperately to escape, to do nothing but sit by your child's side, watching him breathe in and out. You wonder how often is too often to call the NICU for an update. How long before they block your number because they are sick of hearing from you? You try not to show your despair for the sake of your guests who care very much, but don't know how to act or what to do. They come to see you but there are none of the cute little baby gifts that a new mommy should have lavished on her. They are afraid to offer these gifts, afraid that they will make the pain worse or jinx the situation in some way. There are those who do not visit at all, who do not call. Convinced that they should "give you space." Their true feelings or an action as a result of their own discomfort? Who knows. Flowers come, but they are flowers of sympathy rather than congratulations, this is how they feel to you anyway.
A nurse comes every few hours to remind you to pump. The whole time you are listening to announcements on the intercom, telling all the new moms to come to breastfeeding class or discharge class. Babies are welcome to attend these classes with mom. A callous nurse suggests that you attend these classes as well as you, "Might eventually need this information." You resist the urge to cuss her out. You wish desperately that your soft, warm baby were tugging at your breasts, rather than this cold, hard plastic. Pumping hurts a little at first too. And the knowledge that it may be months, if ever, before your baby can actually nurse threatens your sanity.
Occasionally a hospital employee will come in and unintentionally rub salt into your wounds. The photographer, unaware of your child's status, comes and offers to get your baby from the nursery for picture time, asks if you have a special outfit. Choking back tears, you explain and the person beats a hasty retreat in embarrassment. Not really their fault but you hate them anyway for their insensitivity.
Sometimes you venture out of your room for a different view. Bad idea. Babies and happy new moms and proud dads and adoring visitors everywhere. Not your world. Why don't they have a special wing for NICU moms?
Your room is boring, your only view for 4 or 5 days. If your baby were with you, the time would fly by as you practiced changing diapers, showed them off, watched them sleep, comforted them when they cried, lots of stuff to keep you busy. Now you only have daytime tv and the drone of your breastpump to help pass the time.
And then...you go home. And the pain intensifies. You are still waking up every few hours to pump. But instead of the beautiful euphoria that a new mom should feel when she first realizes why she has woken up, you feel only sad and tired, worn out by your desperate need to have your baby sleeping by your side.
You try to pump, hoping that you will have a nice big milk supply to nourish your premature miracle. You have heard about how moms let down their milk with just a glance at their child or the sound of their cry. All you have is a Polaroid picture of your angel hooked up to a bunch of machines. You close your eyes and try to concentrate on your baby without all that, but you cannot see her. You do not know her smell, you do not know how she feels because touching her can cause too much stimulation and make her oxygen saturation drop. You cannot even really picture her face as it is swollen from excess fluid and hidden by tubes and monitor leads.
Visitors dwindle once you go home. There is no new baby to visit and you are simply a wasted milk factory. Not really that interesting, you can acknowledge that. But you are desperate for conversation, a shoulder to cry on, someone to understand that you are still in a tremendous amount of pain.
You cannot even look at the baby things, cannot bring yourself to work on a nursery. You try unsuccessfully to resist the urge to take fistfuls of the narcotic painkiller they sent you home with. But sleep is your only ally. There you can escape the pain and the fear. When you awake you crawl pathetically to the phone to call for your 30th update of the day, only to have a grouchy nurse tell you that there has been no change. Or worse, you hear that they have had to up the setting on the oxygen, add a new med or take another x-ray.
That is my not so eloquent description of the NICU experience. It is the sort of hell that I would not wish on my worst enemy, should I be so misfortunate as to have an enemy some day. It is the kind of pain that I want to shield everyone in the world from, that I would rather take on myself than have to watch a beloved friend endure, because I already know what it feels like.
I must now say that as I write all of this stuff, with every letter I type, my hope and prayer is that Lauren is viewing all of this from a different perspective. That she is seeing the positive in all of this. And what is that positive? The fact that she is facing all of this with the knowledge that her babies ARE ALIVE! They are on vents! They are on meds! Their little hearts are beating and they are being watched closely by tons and tons of doctors and nurses. There are monitors keeping track of all of their bodily functions and their little bodies ARE functioning. Given where Lauren has been in the past, what I have just described as heart wrenching sadness may be her joy. I am clinging to that thought on her behalf and sending all the positive energy that I have in her direction.
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Cherith has written words that I could have written myself, word for word.
No one, ever, should have to go through the experience that is NICU. I remember being in hospital and having every one treat me as if my baby was already dead. There was no congratulatory flowers, no celebration. Just fear. I had to ask a nurse for a breast pump and she said “oh, I thought you wouldn’t be needing this”. No you bitch, my baby is still alive and I would like to think he will remain that way. Seeing all the happy moms and their babies, their visitors cooing over the fat healthy new borns, it broke my heart. Cherith is right, there should be separate ward for moms with babies in the NICU. It is cruel being among the other mothers.
That sick feeling when you wake up, after eventually falling asleep, your heart sinks as you dial the number for the NICU. What will the news be? What if they tell me he has died in the night? The enormous relief you feel when he has had a good night, the crushing despair and sense of helplessness when they say he had a rough night. And when you are there, you feel so helpless, you just get in the way. The alarms keep going off as his oxygen levels drop, or his blood pressure increases, or worse, he stops breathing.
It’s a nightmare that place, it keeps your baby alive (hopefully) but it’s a living nightmare.
My heart goes out to Lauren, such a long road ahead. Thank you for your support for her, please continue to keep her and her babies in your thoughts.