the NICU

Dearest Lily,

Yesterday when I was attempting your first ponytail- you have a natural mowhawk at this point:) - I snapped a quick photo of you on my camera to send to Grammi and Aunt Hopie and Aunt Lori, Aunt Heather, Aunt Katy, Aunt Cindy...and a host of other friends and family members who are on the receiving end of a daily Lily photo.

And the picture I took of you was so adorable- you were grinning right at me as I took it, sitting up proudly and clasping your hands together and sporting your teeny pigtail atop your head...


And when I went to hit "send" it struck me- she looks like she has Down syndrome.

Seems like an obvious thought, doesn't it?

But what also struck me was- I didn't care.

This is going to sound very shallow of me to say, Lily. And probably when you're older I'll tuck some of these letters away.....because I don't want you to know that when you were very little I feared the look of Down syndrome.

When you were first born and staying in the NICU, Mama and Daddy were staying at the Ronald McDonald house right next to the hospital. And that first night we stayed there, I spent 4 hours on the phone with one of my dearest friends in life, your Auntie Denise. I was having a full blown panic attack. And Lily, I hope you never have one. They are hideous.

I couldn't breathe, my legs were numb, I was shaking all over from head to toe, the room was spinning, I was trying to get enough air in my lungs but I couldn't- I felt like I was losing my mind. I felt like I was about to die- no, I knew I was about to die- and nobody would know. Daddy was sound asleep, exhausted after being up for over 48 hours taking care of you while Mommy was recovering at our hospital. Grammi and Aunt Hopie had flown back home to Arizona that morning, my doctors had discharged me early from our hospital at home so that I could go to Portland to be with you...I know now that I was not abandoned, but in those moments, in the middle of the night, I felt completely and utterly abandoned.

And in the state of exhaustion and panic that I was in, due to lack of sleep and hormones and shock and giving birth and also- your diagnosis- I felt that even God had abandoned me.

I was a wreck, dear Lily, and looking back that was one of the scariest nights of my life.

In a sense this letter could be called "birth story part 3"...because that night is so intermingled in my mind with the memory of your birth.

I'm going to back up for a moment, to set the stage for that night...

I wrote about your siblings' reactions to your diagnosis here .After those painful moments, the EMT's arrived from Portland, to take you by ambulance to OHSU.


I don't know that I have ever felt so helpess, or cried so hard. Those EMTs were so very compassionate, so tender hearted and gentle. They explained to Mama that they were going to take very good care of you, and that they were going to make sure nothing happened to you on the way.

Daddy was riding with you, and he told me he would call me as soon as they reached the hospital. I held you in my arms, tears falling on your sweet little face, and I sobbed and sobbed, saying meaningless things like, "I can't handle this" and "This is too much".

Daddy stroked my hair and talked me through my tears, telling me he needed me to be strong, and that as soon as I woke up in the morning, Naomi would be there to pick me up and drive me to Portland.

They placed you in a huge portable isolette, and Daddy hugged me one more time...


And I was alone.

Mackenzie drove back to our house to get a suitcase packed for us for the week...we had no idea how long we would be up at Portland. A nurse got me situated in my recovery room, helped me into bed, gave me sleeping medication, showed me how to order food...I made some phone calls- I hadn't been able to talk to anyone all day, being in the little NICU our hospital. I had a list of people I wanted to call, but my sleeping aid was kicking in quickly.

The last thing I remember was talking to your Auntie Kris on the phone, telling her how beautiful you were, and how exhausted I was...

...and I fell asleep.

Kris told me later that she was in the middle of talking, and suddenly she heard snoring on the other end of the phone.

And at this point I want to thank God for His help and grace and also....thank God for modern medicine. Because I slept so hard that night, which is absolutely a miracle in itself. I always spend the first night after having a baby wide awake- I am staring at my babies, cuddling with them, nursing, happily high on adrenaline, and it is my favorite time in life.

Poor Mackenzie came back to the hospital and found me sound asleep. She says she lay in her hospital bed and cried and cried, and at some point in the night I woke up to her crying, and said "Come here, honey, tell me all your problems." Apparently she did just that, but I have absolutely no recollection of that. Mackenzie realized half way through that I was snoring, so she went back to her cot and cried herself to sleep:(

The next morning Naomi arrived first thing, as promised. I have never been so happy to leave my hospital behind- normally I'm enjoying all the special care from the nurses, soaking up my last minutes alone with my baby before we head back to reality, but not that morning. I couldn't get out of there fast enough!

When we arrived at the hospital and I saw you again for the first time since you had been whisked away in an ambulance- I almost didn't recognize you.

You had oxygen tubes, an iv, monitors looked a little swollen, and most of didn't look like my baby.

I spent the entire day holding you, trying to nurse you (unsuccessfully), kissing you, staring at you- trying to bond with my wire-covered baby. It was a foreign experience to me. I was used to spending the first 24 hours snuggled up in a hospital bed with my babies, nursing contentedly, and welcoming streams of happy visitors. Instead I was sitting in a little corner of the sterile cold NICU, partitioned off from other sick babies so that I could try skin-to-skin nursing with you.


The constant beeping of your "leads"- the lines of wires that connected you to a giant monitor- created a surreal feeling like something out of a science fiction novel. Nobody talks in a NICU. They whisper or motion, or if they do talk, it is in hushed somber tones. There is no laughter, no warmth, and although we had some very kind nurses, I wouldn't help but feel that all around me life was hanging in the balance.

So all day I sat in a rocking chair, holding you and loving you, and trying to feel normal again..trying to find that feeling I love so much after giving birth. That proud, "I made this baby, she came from me, just a few hours ago she was still in my tummy, and look at her now, she's alive and healthy and real, and we made it through!!" kind of feeling. But it wasn't there.


Don't get me wrong, Lily- I was so in love with you. But right along side of that love was a feeling I had never had after giving birth- fear.

And over the course of the day that fear kept building and building.

You weren't nursing like all 9 of my other babies had, you fought it, turned away. Your eyes weren't open, you were sleeping heavily and you didn't hold yourself in a tight curled up little ball like my other babies were a limp little puddle, my first experience with "low muscle tone" that is common to ds.

The doctors weren't there to ask questions of- they only made their rounds in the mornings. The nurses were busy with paperwork and other babies, and seemed to know what they were doing so well, that they forgot ordinary mommies like me were drowning in a sea of worry and the unknown.

And as I sat, my after-birth pains got stronger and stronger- I hadn't been able to nurse for 24 hours, and as a result my uterus wasn't contracting like it should. Normally I would have already been done with this part of the post-labor pain, but my fresh attempts at nursing had only now begun to trigger a response in my uterus.

Daddy and I realized we had never gotten my pain medicine- all we had been consumed with was you. This revelation hit at almost 5 o'clock, when any pharmacies would close.. and the nurses in the NICU said they weren't even allowed to give me tylenol, as I was not a patient.

So Daddy left to try to find a pharmacy, and Mackenzie went to the cafeteria to find something to eat. And while I sat and held you I suddenly felt blood pouring out of me, through my clothes...I looked down and saw a pool of blood on the floor, called frantically for a nurse...

But your kind nurse, Bethany, had ended her shift for the day, and her replacement seemed nonplussed by my crying and request for help. (I guess they see so much real trauma, that a little pool of blood on the floor isn't cause for tears.)

I handed you to the nurse and said I needed to try to find a pad the chaos that resulted after your birth I hadn't packed any pads. The nurse unsympathetically wished me luck, and I headed to a bathroom in search of ...something.

My jeans were soaked, I was in so much pain, and suddenly- my legs would not function. Sitting all day in a chair had caused my legs and ankles to swell, and I'm sure standing so quickly and rushing down a hallway didn't help either.

There was nothing in the bathroom that would help, so I went back to your corner of the NICU...where another nurse informed me visiting hours were over for an hour, while the staff held a meeting., and that I needed to leave.

Visiting hours over? But couldn't mommies stay?

The nurse firmly insisted that I leave, and come back in an hour.

In my haste to exit I left my jacket behind...and I found that the rest of the hospital was not as warm as the NICU had been. Add shivering to my bloody, pain-filled, wobbly-legged body, and you get the preliminary to an anxiety attack.

I found Mackenzie coming back from the cafeteria, and asked her if she could go back to the NICU to ask for my jacket. She returned a few minutes later, so upset because the nurse at the door told her they would not allow anyone in the NICU, and "her mother could wait an hour."

Daddy finally made it back to hospital- saw me curled up in a tear-filled heap on a chair in the waiting room, with Mackenzie trying unsuccessfully to console me- and promptly called Uncle Chris.

"Your sister could use some cheering up," Daddy said.

Do you remember Uncle Chris, Lily? Way back when the doctors were first suspicious of ds, Uncle Chris kept me laughing with his predictions of a normal Rice baby- "as normal as that could be," I believe were his words.

Uncle Chris is not the living epitome of compassion. He doesn't offer profound words of condolence, or ooze with sympathy.

But Daddy knew Uncle would deliver just what I needed- a good laugh.

He handed the phone to me and said, "your brother wants to talk to you."

"Hello," I sobbed.

"What's wrong?" Uncle Chris said, and something in his tone just lifted a hundred pounds of grief off my shoulders. I poured out my whole pity-party, and in true Uncle style, he had me laughing in about two minutes flat. I could be on my death bed, and Uncle would be cracking jokes all the way into eternity.

So after a 45 minute pep talk, Daddy and Mackenzie and I headed back to the NICU. We held you for a few more hours, my pain medicine started to kick in, my bleeding slowed, and soon it was time for us to go back to the Ronald McDonald House. Mackenzie said she would stay through the night with you in the NICU. No visitors are allowed to sleep while holding babies, and Daddy knew I would not be able to keep my eyes open through the night.

And this letter had gotten so long, sweet Lily, that I have decided to write it in two parts...

Because I don't want to shorten my narrative of what happened through that night, just for the sake of time.

You see, that night was such a turning point for me, Lily. In a sense it was the night I accepted who you were, and made a decision that I was going to put my trust in God for our journey together.

And I'm not going to pretend that I got all my grieving done in that one night. But there was a definite transformation in those pre-dawn hours, and looking back I know that although I felt completely and hopelessly abandoned, I was in fact being held in the loving arms of my Savior.

Part two tomorrow...

And loving you as always,

Mama oxox

(part 2)

Dearest Lily,

Yesterday I wrote about your birth story part 3...and today I'm going to conclude it. Sort of.

I left off with our decision to leave your sister Mackenzie with you in the NICU through the night. The nurses had told us that I wouldn't be able to hold you if I was falling asleep, and Daddy convinced me that I really needed to get a good night's sleep because we had a long day- maybe few days ahead of us. At this point the doctors were still just giving you liquids through your IV, and the nurses were attempting to feed you my milk in a bottle- though you weren't doing a very good job of taking it.


We kissed you goodbye and told Mackenzie to call us if she needed us for any reason...the Ronald McDonald house where we were staying was right next to the hospital.

At this point my legs were really not functioning at all. It was so embarrassing, but it was like walking on sticks of jello. They literally would not hold me up. Daddy went to find me a wheelchair, and I started crying in the of the nurses asked what was wrong and I told her I was scared- why weren't my legs working? Normally I don't have medication during my labors, but I had had an epidural with your delivery...I was worried that something had happened during that epidural that was now effecting my legs.

The nurse was very sympathetic and kindly explained that a)I was exhausted b)I had just given birth the day before c) I had been sitting all day and not drinking enough water, so my legs were retaining water and swelling and d) my pain medicine had started to kick in, which can make it difficult to walk normally.

By this time Daddy was back- thankfully, because I could not even keep my eyes open. He helped me into the wheelchair and piled our bags on top of me...and away we went.

Lily, it's going to sound dramatic as I tell you what that little journey felt like. And writing this really makes me laugh...because it was only half an hour!! But at the time it felt like eternity. Daddy was still navigating the hospital- which was really a campus- and got a little lost trying to find the exit. I had my eyes closed the whole time, and I kept dosing off and waking up only to find us in a different hallway. Poor Daddy was exhausted as well- he had been up since 6 the previous morning!

When we finally reached the entrance of the hospital, Daddy realized we had to leave the wheelchair behind. The Ronald McDonald House is a ten minute walk around the corner of the hospital...and by this time it was 11 at night, in January in Oregon..raining...cold...and my legs wouldn't work.

So your genius Daddy went looking for a cab driver. What he found was a middle eastern security guard who was making his rounds in Not for the purpose of transporting semi-comatose, post-baby mommies from one building to another...but Daddy can be very persuasive when he is desperate.

Daddy wheeled me out to the cab and helped me out of the wheelchair- I could not stand, so he picked me up and put me into the cab, and went back to the entry way of the hospital for our luggage. By this time I was shaking all over from the cold and what I know now was panic...and in my delirious state...don't laugh, Lily, and I know this was terribly politically incorrect of me but...I thought the cab driver was a terrorist who was going to kidnap me.

Have you realized your mommy can be subject to paranoia at times? I assure you it is only under extreme duress. This usually doesn't happen to me on an average day.

But at that moment- in the middle of the cold rainy night, in my drug-induced delirium...Osama Bin Laden was my cab driver. And I was stuck in the cab with him, cuz my legs wouldn't move. And it took FOREVER for Daddy to get our luggage back to the car. At least it seemed like it!

Osama was stoic and silent as he drove us around the corner to our little home away from home. He screeched to an abrupt stop- waited half a second while Daddy got the luggage out and helped me out- and peeled off into the night. Maybe he was worried we would ask for a ride back to Corvallis as well? I dunno, but I was glad he was gone.

Until we realized.... there was a loooong sidewalk leading to the door of the Ronald McDonald house- the name of which at this point sounded to me like some sick asylum- and Mommy couldn't walk. And our luggage was sitting next to us in the pouring rain.

And right now I have to say that your Daddy is MY HERO, because that man was more exhausted than I was, I'm sure. But he heroically stacked our luggage and my purse and bags filled with breast pump supplies on top of each other, grabbed the stack with one hand, put his other arm under my arm and around my shoulder and DRAGGED us all the way down the walkway and up the stairs into that house. We were a sorry sight I'm sure- my legs wouldn't even attempt to move forward, try as I might, and Daddy and I actually started laughing...sort of maniacally laughing...saying things like "some day we're really gonna look back at this and laugh."

And I'm so glad I am now able to look back and really laugh at that moment.

And now we have to go to church, so I will have to have a part 3 to my part 3...and I know this was a rather funny little letter. But isn't it nice to know that little part of our night served a purpose in the big scheme of things? Cuz my story really needed a little comic relief in the middle, and our terrorist-cab-driver-jello-legged-mama incident certainly fit the bill.

I'm just sorry we didn't take pictures!!

Love always,
Mama oxox