Lily Anna 5 lbs, 17.5 inches, born at 10am.Lily had a large hematoma (bruise) on her head from the vacuum assist, as the body heals from this it can turn to jaundice. Lily was placed under bilirubin lights and left in the NICU to 'cook'. She had aspirated amniotic fluid too, and had a chest x-ray.
The kiddos came in to see their sister a few times prior, but since she was 'cooking' they didn't get to see you up close. On Jan 4, she had healed enough from the lights that our nurse, Beate, allowed Andrew to show her to the kids through the hospital window.
I spent my regular nights at the hospital, then because Lily was still in the NICU they allowed me to stay in a room to be near her. I attended every feeding, pumped milk and cuddled her as often as I was able. My body was healing from recovery and I was feeling better than all the other times I've delivered.When my delivery room was needed by another patient (the room you deliver in is the same room you stay in), they moved me to a smaller surgical recovery room. Mountain Point Medical is such a new hospital that they allowed me to stay in the room extra days for free. It was wonderful. Members of my church gave me rides to and from the hospital so I could sleep at home; I used the hospital room to rest and heal during the day. I was approved for driving on Jan 6. (I've had passing out episodes with post-partum recovery, so we were taking it safe.)
During this time Lily was in the hospital, she couldn't eat as was receiving everything bolus feed (ng tube straight to the stomach.), also she required oxygen and de-stated every time they removed the O2.
On Jan 6, I spoke with Lily's nurse Jennie. I told her that the entire time I was pregnant with Lily, I felt that something was wrong. I even made a bucket list of things to do with my baby, even as early as week 5 pregnant. We 'took' Lily to the beach in Oregon, to my brother's house in Washington. I drove on long mountain tours and 'showed' her the scenery. I told Jennie.
"I cannot imagine my baby Lily as an adult. It's just not there."
Jennie immediately called the pediatrician, and two other specialists. She had them look over Lily's chest x-ray. The two other specialists immediately noticed that her heart was enlarged, and her ribs thinned than expected. Previously, these issues had been ignored, because the doctors were only focusing on her lungs and the fluid she aspirated. Jennie coming closer to me, informed me:
"We are life flighting your baby to Primary Children's Hospital."
Rewind to week 20 of my pregnancy, during the routine ultrasound, Andrew and I were excitedly waiting to hear boy/girl (though we both already knew it was a girl.). When the tech came to her brain. Immediately, on the screen was a large gap of fluid on the left ventricle of her brain. I asked the tech what is was, she told me "lots of babies have that." and "it can mean Trisomy 18, but you're probably fine." and "You can have a genetic test run, or we can just wait to see if it clears itself."
Then, came the growth, my baby was behind. The first ultrasound, at 12 weeks, showed a baby behind by 3 weeks. But at the 20 week ultrasound, she was behind by 5. "It's fine." the tech assured me.
Four weeks later at the 24 week ultrasound, the chorid plexus cyst on her brain would be healed, but her growth would be behind 7 weeks. Still, I held onto the hope that things were okay. Also, I opted to not have the genetic tests preformed, because the cyst was gone.
Hearing my daughter was being life-flighted made me cry, but I was reassured by my faith in the doctors at Primary's--I knew Lily would be in good hands.
But I didn't want it to be Trisomy 18. I had researched after that 20 week ultrasound, and I knew it wasn't good.
I picked up Andrew and he drove with me to Primary's. We checked in our tiny daughter, and lovingly said goodnight before coming home.
I ignored my questions. During pregnancy, I mentioned to my OBGYN my concerns of her size, but I didn't push it. I tried to make her decreased motion normal. I tried to convince myself that everything was okay, even though I knew it wasn't. I wanted hope. I wanted faith that all was okay.
I knew it wasn't okay.
I went to the hospital alone the following day. Andrew took off a week while we were still at Mountain Point, and a few other days and stayed with the kids. But, he had to work on Jan 7th.
Lily was at her EKG test.(Heart)
She returned with her chest all sticky, and exhausted. Doctors came in and out, nurses checked her. Primary's is extremely efficient with testing. You don't really have any down time.
The geneticists came in, introduced themselves, "Hey, we're called when we see a few other abnormalities."
I already had them memorized. "Yep, microcephaly(small head), micrognathia(small chin), wide set nipples, generous clitoris, low set ears, tags, and a unique hand hold. Plus, the 20 week ultrasound showed a chorid plexus cyst. But she doesn't have rocker bottom feet, or a cleft palate."
Dr Dugan asked me if I had a medical degree.
"No. I have a masters in Biology, and otherwise, I like to research."
The double checked everything I said, and left quietly. That's when Dr. Ellsworth entered.
His conversation was a blur, though I know at the time that I listened and responded, and told him that everything he was saying was expected. He reported on her heart, lungs, kidneys, liver, intestines, stomach, brain... he exited quietly.
I sobbed.
Life Flight
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