But with what I'm told is most likely PTSD. From giving birth. I didn't even know that existed!! But it makes sense.
This first day in the NICU, a care manager told us that NICU parents are the absolute most at risk for PTSD and PPD. Makes sense now. I spent most of her first week, sitting bedside, crying. The second week, I spent crying every drive there and back and found myself unable to talk about anything but the positives.
I feel robbed.
I feel robbed of the beautiful last weeks of pregnancy. I love being pregnant, even the miserable, uncomftsble parts..I love. I love the big round belly (that I didn't get this time), I love the movements, I love the anticipation and wonder. I just love being pregnant. And I was robbed of it.
I feel robbed of the first weeks of my daughter's life.
Do you know how incredibly hard it is to sit by your baby's isolette and not even feel like she's yours? Like you aren't her mom even.
I'll go ahead and say it..I'm thankful. I'm so very very thankful that she's mine. I'm so thankful for her health. I know how lucky we are. I know how easy her stay was compared to most 32-36 weekers..I know how lucky we are that we made it to 32 weeks. I know how lucky we are that she weighed 3 lbs 13oz.
I know after seeing incredibly sick babies, 1 pound babies, babies struggling to breath even with help from machines, babies that were detoxing from drug use, babies with birth defects, babies that would never live to go home, babies that were alone....I KNOW how lucky we are. And I'm so so thankful for that.
At first, I felt intense guilt (and still feel guilt at times), that we got off so easy with Shiloh's health. I felt guilt that I had such strong feelings of being robbed, of the sadness, such strong feelings about the traumatic circumstances surrounding her premature birth, our experience with the staff. I felt/feel guilt that I feel this way, when I know how lucky we are. After the initial shock and evaluation, we knew our baby would survive. We knew after birth that she would survive and how healthy she was. I had no right to feel anything but happy...and I felt guilty that I was anything but happy.
I was happy! I was thrilled that our baby was/is so strong, so healthy, so beautiful. But I felt/feel robbed.
I'm told my feelings are 100% normal and valid. And that one day, I won't feel this way when I think back to our time at Mission.
From the second we stepped foot into Mission, our experience was less than good. To be one of the best in the state, they failed us. Yes, part of it was simply the circumstances being far less than ideal compared to our first two children. But the bigger part, was the treatment we (me and then Shiloh) received. Shuffled room to room to room, unable to move a muscle while strapped to monitors on my back in a bed for 8 hours on, 20 minutes off, not allowed bathroom privileges or food for hours and hours on end. Millions of tests ran, results not told to us, questions unanswered, residents unable to answer even the simplest of questions, doctors that didn't even check in, ultrasounds done wrong that led to bad things... Our experience was far from positive.
Most of the NICU sucked just because of the circumstances. No mom wants to beg to hold, or even touch their baby. No mom wants to be told how long she can hold or exactly how she can touch her baby. No mom wants to miss all the firsts. But that's the NICU. I felt like I missed Shiloh's first weeks of life and all her firsts. Her first feed was given by a nurse. Her first bath, I was there for and able to help, but not allowed to hold her for. Her first bottle, I was there for, but wasn't allowed to hold her and was told I was doing it wrong a thousand times. I pumped like crazy because it was the only way I felt like I was actually doing anything for her. I missed her first diaper, clothes, swaddle. I missed her moving rooms, missed her moving to a crib, missed everything it felt like.
Yet, I was there and watched her being stuck over and over for blood draws. Watched them try to get an IV started...and fail, repeatedly. I watched this happen multiple times. Watched her limbs swell when her tiny veins blew, daily..sometimes multiple times daily. Watched her NG tube being placed. I cheered when a nurse got an IV started, successfully, on the first time. And I bawled when I watched them twist and turn her limbs, hands and feet into unnatural positions, to repeatedly fail at starting another IV.
I knew from previous ultrasounds, from a tech I trusted and my original doctor, that her heart and intenstines and bowels were perfect. Roni, our tech, and Dr. Towle double and triple checked everything. I knew she was perfect. Yet I experienced fear and uncertainty when we were told somehi g was wrong. Because of one bad tech at Mission, I watched as our baby had to undergo testing and pass other, extra, physical testing because of a shotty tech's mistakes. I had to wait, repeatedly for results, and then beg for them, before we were told all tests and physicals were perfect. My baby had to undergo multiple tests because of her mistake. Ultrasounds, x-rays, EKGs, invasive and dangerous procedures, all unnecessary. And all on MY 3 pound baby.
I was there when she had Brady's. Watched when her heartrate suddenly plummeted into the 50s and watched nurses rush to stimulate her to bring her out of it. Yet, even during that, I felt lucky in a way because other babies nearby had them every few minutes, or stopped breathing, or once, literally coded right in front of us. I felt guilt that my baby was so healthy when other babies....
I was there when her monitors would come off and the screen would go crazy thinking she had stopped breathing or that her heart had stopped. I was there when nurses and doctors would come running and relieved when we realized it was only the leads coming off. I was there when she choked on a bottle and went blue.
But I wasn't there for so many other terrifying things. No matter how many times or who I requested to call me, not one single time did they ever call me with an update. Sometimes, I would call for an update and her nurse would be excellent and give me a detailed update. Sometimes, I'd call repeatedly and never get an answer for 12+ hours. Sometimes, I'd call and get a horrible nurse that wouldn't update me or would only say "she's fine".
When she graduated to cue-based feeds and her max was 3-4 hours, I was thrilled when she took all her feeds by mouth and woke up for them. Yet, I was livid when a nurse updated that they had gavaged a feeding due to laziness. Or when, this one nurse in particular, let her repeatedly go 5-6 hours between feeds because she was "too busy" and "forgot" about her until she screamed so much she passed out. Shiloh doesn't cry...there's no excuse for her to have cried until passing out because of someone else's error. And for that same nurse to be shocked that she lost weight that night and to imply it was because I wasn't able to be there 24/7? I can't even begin to describe what a horrible feeling that was.
I felt guilt every time I walked out of that hospital without my baby. I felt guilt every second I wasn't with her. And every second I was with her, I felt guilt that my two older ones were missing me at home.
It's a horrible, horrible feeling to leave the hospital without your baby. It's even worse to do it over and over.
I haven't been able to look back at pictures of her first days. I'm thankful I took and have so many, but I can't make myself look at them yet. I can't look at pictures of other baby's in the NICU yet. CNN posted a video, that I knew ended very positive, of twins from NICU to 17 years old. I never expected to get sick to my stomach, feel shaky and have an anxiety attack over some of the scenes in the video, over hearing the sounds of the NICU again. I can't watch videos or look at pictures yet.
I've only touched on tiny bits of our experience. But really..it's no wonder that I might have PTSD or that any NICU parent is at risk for it.
I hate Mission. I never want to return there.
But I am oh so very, very thankful for Shiloh. She amazes me every single day. She was/is worth every second of the pain.
I'm struggling with the entire experience. But I'm so happy to have my baby.
