Love for Lily

Lily loves cuddles!

PCH

The night before when I left the Hospital, Lily was acting lethargic and her skin was graying. The gate to Heaven was open, and her foot on it's doorstep. I poured out my soul to the Lord and told him I needed desperately for Sarah to hold her sister at least once, alive. The following day, when I arrived with Andrew he gave Lily a priesthood blessing and requested that angels attend her.

 The change was immediate. The presence of angels and a guardian stood near my daughter, guarding the path to Heaven, until the time is right.

Lily looked far less sickly, and I actually slept knowing that she was protected. (Jan 12).

I drove to the hospital each day, cuddling Lily, singing to her and telling her about her sister. how Sarah has begged for a sister and how excited she is to hold Lily.

On January 15th, when I arrived at the hospital, I had barely made it to Lily's crib when the geneticists arrived. (PCH has a very effective communication system that has nurses immediately inform doctors when parents arrive. They are efficient.) Dr. Dugan, genetics, came to Lily's crib.

I greeted them warmly, "You have Lily's results?" I asked.

"Yes." Dr. Dugan had a worried look, "Do you want to go to a private room?"

I shook my head, "Does she have trisomy 18?"

"Yes."

My heart sank. The Lord sent me a Celestial babe, whom I will have to give back to Heaven, too soon. "That's what I expected to hear." I whispered reverently. "Is it partial or mosaic?" (Partial or Mosaic T18 babies have a higher chance of survival, some have even made it to adulthood, it was my final grasp--would Lily maybe be here for awhile?)

"It's full trisomy 18."

1% chance of seeing her first birthday. Probably less, since I had seen Lily's heart scans, with heart surgery she might last awhile, but I had seen the condition of her heart, the cardiologists said too many things were wrong for them to operate on it. Plus, she likes dying when intubated.

"Do you have a plan?" Dr. Dugan asked.

"My husband and I have already discussed it." I told her, (Andrew and I had discussed it for awhile) "We are not going to pursue heart surgery(plus, right now she wouldn't survive it if we tried), our goal is to take her home, to spend time with her siblings."

"Did you hear that sweetheart, you don't have to have surgery." Dr. Dugan bent over Lily talking to her sweetly.

I thanked Dr. Dugan. Picked up my tiny daughter and silently sobbed in the corner next to her defibrillator (it was right next to her crib).

The following morning, Andrew would go to the hospital with me. We had our team meeting. Filled out discharge paperwork,  Watched videos on carseats, seizures, CPR, were trained on NG tube feeding, oxygen equipment, food pump. We left PCH with a car stuffed with medical equipment, and since our infant carseat was apparently too big for Lily, a 'free' new carseat from PCH. I sat in the back of the car right next to Lily, watching her labored breathing, her chest thumping hard from a heart working too much, and just hoping that we would make it home....

For this:

Sarah was the first at home to hold Lily. 

Lily Days

I had three missed calls from my Bishop on my phone, awesome how the Spirit informs others of what is happening.

I left the hospital early, I needed to talk to Andrew in person.

The other kids were already in bed, or getting to bed. I don't even recall eating dinner the night of Jan 9th.

I sat with Andrew on our bed and told him everything the doctors had found out about Lily.

Her heart has a large hole between the two ventricles(CVD), valvular disease affects all the valves of her heart, with the left side being tight, and the right side loose, She has pulmonary hypertension because the valve that's supposed to close at birth hadn't, and won't ever on it's own. Her aortic value is loose. All of which is leaking fluid into her chest cavity--- and is inoperable.

That was only the start.

I cannot adequately describe the howls of a father who has just learned that his child will pass away, we held each other close and eventually I was able to describe the rest.

She had only had a brain ultrasound, the MRI was scheduled for the next day. But the ultrasound showed significant damage. Her kidneys surrounded by fluid were causing her blood acidity to rise. The only good part was that her intestines seemed to be working. Her lungs thick and lethargic caused the doctors to wonder if she had cystic fibrosis. Also, after her EKG (heart test) she had coded (stopped breathing).

I called my brother, who is a doctor. Told him that I thought my daughter's condition was fatal, He agreed.

We called our parents.

I texted our Bishop, asking if we could give Lily a name and a blessing in the Hospital. (Being of LDS Theology, babies are typically given a priesthood blessing in church. This is not considered a saving ordinance like a baby baptism would be for other religions.)

I pondered over my pregnancy. How even early on, I felt that something was wrong. Also, I was overwhelmed by the strong spirit of my tiny daughter. In particular, my husband and I traveled to Oregon last May to attend my niece's wedding at the Portland Oregon Temple. For a few days prior and following the wedding we took our kids sightseeing. I was 9 weeks along, we hadn't even been to that first OBGYN appointment. Yet, watching my kids play in the sand, I felt a tiny spirit join us. She danced in the waves. Her toes curling over the sand, she giggled (in my mind). She was there, playing on the beach in Oregon with her siblings.

All during my pregnancy, I had vivid moments when I felt my daughter's spirit, healed and glorious, playing with her siblings.

I spoke with our Bishop the following morning, Jan 10th, and shared this experience. My parents came to watch the kids; Andrew and I went to the Hospital.

Lily was in her medical crib, on the 2nd floor(reserved for surgery recovery/non-critical patients), her skin was a bit dark. We held her until the nurses came to take her to her MRI, Andrew gave verbal permission for her to be intubated (anesthesia). We were told it would be about 30 minutes.

We left to eat lunch at the Rainbow Cafe in the Hospital. Then waited in the MRI waiting room. We were told that Lily had about 5 minutes left, then the doctors would come for us. But the doctors never did. We waited an hour, then another.

Finally, Andrew asked about our daughter, this time, they sent us to the 4th floor--- Critical Care Ward, NICU. We arrived at her bedside, The cardiology team standing by with a defibrillator, the respiratory team monitoring a breathing machine, and the pediatric team monitoring everything else. Tiny Lily lay in a NICU bed, in sheer frozen panic.

We sat down. At least, I couldn't stand. The pediatric doctor spoke to respiratory, "Take out the intubation."

"I can't, she's not breathing." - Respiratory.

"Take it out or she'll have a heart attack." - Cardiology/Pediatric

Nervously one of the respiratory doctors removed the intubation, Lily shuddered. Respiratory immediately placed her on high flow oxygen. Everyone waited silent, and Lily started to breathe.

Relief flooded the doctors faces and after several minutes they took their things away and left. Lily's bed had a new addition, a chart of medication amounts in case of seizure, cardiac arrest, lung failure.

The Neonatologist showed us Lily's MRI. Her corpus collusum (middle section of the brain that allows the two sides to 'talk' to each other) didn't develop. Her cerebellum, in charge of muscle movement, including breathing, was only 10% of normal. She is either missing, or has too small of pons(in charge of sleep, dreams, all brain messaging to the body), and pituitary glands(controls growth).  Her brainstem (controls cardiac, respiratory, and most autonomic functions) is short, small and crooked. 100% mental retardation.

She stopped breathing after intubation because her brain forgot how to make her body breathe.

We called for a team planning meeting (required to leave the hospital). A doctor from all of the teams attends, it's a room of 6-10 doctors, nurses, specialist, therapists and parents. It was scheduled for Jan 16th.

As we left the hospital, Andrew lovingly placed a pair of fuzzy white socks on her feet. He called them her Angel socks.

We could only dress her for short periods of time, because of all the leads on her chest/body.

 My dad came to visit.

 Jan 11th.

 Lily's little lamb was given to her by another lady who has MS.

I crocheted this blanket for Lily.

Lily Alive

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.

Meeting siblings.

Life Flight

So many machines, keeping alive a tiny miracle.

At Primary Children's Hospital

Day 5 and 6

Jan 3, was more of the same. Pumping, cuddling, sleeping, eating. Lily was being treated for bilirubin (lights), pneumonia in her lungs, wasn't eating, wasn't holding her oxygen. Andrew's parents helped bring the kids to see Lily. Andrew's mom was able to hold her and his dad looked through the glass with the kids. My mom came too, and I took a picture, but can't find it. (Probably on my other disk)

Day 4

Lily was placed under bili lights. Her bilirubin count was high. They placed her on a bili blanket and gave her funny glasses that looked like sunglasses. All day long the nurses teased that she was at the beach. I couldn't dress her because of the lights.



It was time for me to check out of the hospital. But, since the rooms weren't filled they allowed me to stay in my regular room. I requested to speak to a pediatric doctor. I expressed a few concerns about Lily, and was instead told, "No, everything is fine. She's just little and early."

Day 3

The most hilarious thing I found out about Dec 31/Jan 1 are the number of women that come into the hospital claiming to be in labor. The admitting room was packed with ladies receiving stress tests and begging to be admitted. Many of them were sent home, multiple requested pitocin, induction, or even c-sections. I spent the day cuddling my tiny. Also, I was eventually kicked out of my room and was given a spare room next to the c-section room. It was dark and instead of the large window I had in the delivery room, my new window was tiny and against a wall, so you couldn't really see anything. But I was close to my tiny and had a place to rest and sleep when I could no longer hold her.

I would pump milk, walk to the nursery, cuddle, sit by Lily while she was under the lights until I was too tired to stay or needed to eat. I would shuffle back to that little dark room, nap, eat, pump and return to my sweetheart Lily.

I didn't sleep at the hospital at night. I learned quickly that each time a baby was delivered a chime would sound outside my room. "Lullaby and Goodnight." It was enjoyable at first, but slowly started to haunt me as I realized, Lily had that same chime, but in her case, the goodnight part--could be interpreted as her never waking again.