Thursday, November 24, 2011

One of the many pleasures of parenting is the music. This morning, I woke up humming. "This little light of mine, I'm gonna let it shine!"

It is a long weekend. No one is here. The hospital is mostly empty. The cafe is closed. My doctors are not here. My nurses are not here. So far, the only familiar faces are the resident (God bless the medical residents. They never go home!) and the front desk staff. This depleted staff will not send my baby home.

"Won't let Satan 'poof' it out, I'm gonna let it shine!"

It is easy to slip into self-pity. That is not from God. God has blessed me enormously, and I will not let Satan's whispers muffle God's voice.

It is harder to be patient, as homecoming feels more imminent. Sarah looks well and seems happy. I will spend a few hours with my family having a Thanksgiving feast today. Soon we will be going home. Not today, and not as soon as I had hoped, but soon.

It is a beautiful day. Lily is singing. Sarah slept all night again, so I slept all night again. The sun is shining. The Son is my light, and He fills my life with joy.

"Let it shine, let it shine, let it shine!"

Wednesday, November 23, 2011

Well, it is the eve of Thanksgiving. I am still typing on a fussy wireless keyboard in the NICU, hoping I don't make too many egregious mistakes.

Sarah's g-tube was placed on wednesday a week ago. Last week I was discouraged when Sarah threw up, just after surgery. It set back feeding by two days. Two days is forever when you are counting down days to go home. Yesterday I was discouraged when, at the end of the day, I got sick. I do not know whether it was the republican debate or the hospital cafeteria salad that did it, but it was awful. I left without even kissing my baby goodbye. Today, I am determined to stay encouraged. It is Thanksgiving, after all. Here is what I am thankful for this year:

I have two beautiful daugters. They delight and amaze me every day.

My husband. He has kept this family focused on Christ, even, maybe especially, when things seem hardest. Sometimes when it has been a few nights since we have seen each other, I miss him awfully. I have to remember what a blessing that ache is. I love and am loved by a wonderful man.

My parents have provided food, rides, support and love. Mom put up, and kept up to date, the caring bridge page. They kept Lily singing and praying. Importantly, they provided consistency through the chaos for Lily.

Which leads me to Aunt Kathie, who came into town expecting to help me at home with a baby but instead was a full time caregiver for a three year old. Sarah and Lily's (truly) Great Aunt made the impossible possible. Figuring out DC traffic so that Lily could come in and out of the city.

Martha, Ann, Denise, Michelle, Jackie-- above and beyond.

Sarah has the best possible care. She is doing better than anyone who met her in her first week imagined. This hospital is amazing, but even before she was born she was cared for by a whole slew of caring, intelligent, amazing doctors.

We have health insurance. Really good health insurance. The tests, the surgeries, the consults, the ICU- It is a blessing to be able to consider what Sarah needs without worrying about money.

Friends. We have made new friends here. Our old friends have been amazingly supportive. We are blessed to have the company of such wonderful people.

Community. St. Paul's community embraced us with prayer and support. St. Paul's Church has had us, at times, wondering why we left Maryland. St. John's, thankfully, reminds us that there is a vibrant and warm community in VA as well. They, who do not know us yet, have reached out as well. We have felt the warmth of being wrapped and raised up in prayer.

Our neighbors are awesome.

Our faith. It is easy to forget that Faith is a gift. Ours has sustained us this year. This year, God told us, very clearly, that going through the motions is not and never was enough. He used difficulty to direct us toward Him.

Music. Lily sings and our hearts are lifted. The radio plays a song with just the message I needed in that moment. I leave Church humming. Pandora makes the hospital room a little less hospital-like. I am thankful for music.

We have our own home.

We have food.

We even have coffee.

With all of these blessings, I refuse to be discourged that the doctor cannot tell me when we can go home. We have to get the sign off from so many teams- it will not happen tomorrow. But, tomorrow is Thanksgiving, and on Thanksgiving, Sarah will be eating more than she ever has- just like the rest of us. She will be getting full amount of food the needs by tomorrow. That has been what we have been told was the final benchmark for her to go home. So, benchmarks accomplished, we go home soon. Just as soon as neurosurgery, plasic surgery, ENT, nefrology, pulmonary, general surgery and (of course) our own NICU team say she can go. Maybe cardiology too. But they will because, as Lily told me, "Sarah is fine now. So we should all go home to sleep."

Saturday, November 12, 2011


When Lily was learning to count, among the first things she counted were the silos on the farm.  There were three; three is easy.  She would count them every time we went for a walk, which was most days in good weather.  As she got better at counting, she still counted the three silos every time we walked by them.

Around that time, we took Lily to a city where she encountered towering buildings of many denominations.  "Silos!"

We tried to explain what a silo is, and that those buildings were not silos but we stumbled a bit because the silos on the farm are not in use.  They are not full of food for animals, or anything else.  They are just impressively tall buildings. 

Lily did learn, somehow, in spite of her parents' stumbling, what a silo is.

Shortly after Sarah was born, and immediately hospitalized, Lily did not want to go for walks on the farm anymore.  She had always loved her walks, so we pressed a little.  Lily was afraid of the silos.  Startled, and worried, we wondered why.  "They are going to fall down."

The world had been rocked and things seem to be falling apart.  What do we tell her?  Is it reading too much into her brilliant little mind to have heard a terrible fear of instability?

It was only a week ago when I admitted to myself that my daughter was living out of a suitcase- and so I bought a suitcase.  That may well have been the most emotional purchase I have ever made. I found a leaflet in the NICU which discussed what to expect out of siblings of NICU babies.  Potty training regression. (check.)  Temper tantrums. (check.)  More clingy and sensitive than normal. (check.)  On and on the list went with predictable familiarity.  Then I read the list of feelings which the sibling might be experiencing: they do not understand; they blame themselves; they are afraid they will get sick and get stuck in the NICU; they are jealous. 

What could I say to alleviate her fear?  I wanted to gather her up and tell her that everything would be fine.  Soon, life would go back to normal. 

Sometimes silos fall. 

On Halloween Lily wanted to be a butterfly fairy.   Or a princess.  Or a butterfly princess.  Or a fairy princess.  let there be pink!  Let it sparkle!  Let there be magic and flying! Let it be beautiful, light and happy! 

I was not going to be around to go trick-or-treating, so I took Lily for a walk in her costume.  Skipping down the road, she used her magic wand to turn the cows into frogs.  She turned a puddle into a mirror.  She turned me into a pirate.  Uncle Chuck and his dog, Jethro, were threatened. 

Then we arrived at the silos. 

A meltdown?  Would I have to carry her home? 

Lily lifted her wand and waving it around proclaimed that the silos were beautiful towers!  One purple, one pink and one blue! 

We had a family meeting on Thursday to talk about Sarah.  We have not had these meetings as often as one might like or expect; this in only the second.  At the first, two month ago, our doctors looked at serious problems with five major organs and told us to say goodbye to our precious child.  Now, the kidneys are fine; they cannot find evidence of the earlier finding.  The liver is fine; despite all evidence, she never had biliary atresia.  Her heart is fine.  Her lungs are fine.  Her brain is fine.  Our baby is going home!  One serious concern after another melted away. 

Next week, Sarah will have a surgery to place a tube in her belly.  She cannot coordinate sucking and swallowing yet, and this tube is a better option than the tube she currently has which goes through her mouth. (no danger of aspiration, and no gagging.) When she heals, we go home.  It could be a few days, it could be as long as a few weeks.  But we are going home soon.  Miracles abound!

Through everything, we have depended on our family, our friends and our faith.  Our relationships are stronger.  Our faith is deeper.  Our marriage is better.

We will have to create a new "normal."  But I think Lily is right.  Our silos are beautiful towers.