There are no strings on me!

 I just finished bathing Lily, her oxygen and NG tube were gone just for a moment, and of course I had to take pictures!

 She has been surprisingly stable. Still constantly tired, and her hands have been extra cold lately. But, I suppose this is our new normal.

 I was able to hold a friend's baby who is just about the same age as my sweetheart Lily. The contrast was so blatantly obvious. But I was quite happy to get to hold a normal healthy baby for a few minutes.

I love you my sweetheart. 

Lieben de Nacht

One of the more fascinating discoveries is that Lily is nocturnal.

She sleeps a lot. She can go all day long without waking. You can hold her, irritate her, play music, feed her through her NG tube, change her diaper--through all this she sleeps. Her small body finds it hard to awake when her heart is working so hard.

Speaking of hearts, her heart beat is more of a massive thump. The pulse ox tells me that her heartrate is around 150, this is average for her and is a constant reminder to me that her heart is working harder than it should. Listening to her chest you would notice the same thing. I tease that her heart sounds more like the drumming in the deep from Lord of the Rings.

Unlike my other babies that I could wake during the day and actually sleep at night, Lily can't jive to this schedule. Night time, she awakes. About Midnight she awakes, her still blue eyes looking around, she grimaces and curls forward as if in pain. Yet, the part of her brain that registers pain is damaged, so I'm not sure if she's really feeling pain or not. She has an aversion to toys, doesn't like looking at them, but does like looking at my face...at least I think so. Some T18 babies are blind. Lily isn't blind, but doesn't have much control over her eyes, and is light sensitive. We use targets to help her, and contrasting dark/light colors. But those are hard to use when she's only awake at night.

I've been keeping all my blinds shut during the day because it makes her more comfortable for the small spurts of time that she wakes during the day.

Obviously, this trend is putting a strain on my husband and I with our ability to sleep.

After three days of not sleeping, I switched my sleeping habits.

Andrew comes home from work at 6pm. We eat dinner, clean up, say family prayer, get into PJ's I put up a quiet movie for the kids, then I go to sleep. I love my husband, he is an excellent father and helps with everything around the house--except feeding the cats--haha! He puts the kids to bed at 8pm (yes, I go to bed around 6:30pm). He feeds Lily at 9pm and Midnight. Around 12:30-1am Andrew goes to sleep and I wake up. Lily typically is awake from 12:30am until 3-4am. Depending on the night, I might be able to go back to sleep at this time. Sometimes Lily wakes again from 5 to 7am. Anyway, at least we all get sleep and Lily gets some fun awake time with Mom.

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)